Dana's health nightmare

Erythema Nodosum: The Journey Continues

2012-02-01T20:43:00.000-05:00

Here's the latest pictures of my feet. Check out the swelling! The picture on the left is from 3-4 days ago. The one on the right is from this morning.I called the rheumy and they seemed mad at me because I wasn't taking the NSAID. /sigh so I took it last night and today just to prove to them that the swelling is far beyond just some swelling on the nodules. I actually have full leg edema. I have gained 6 pounds in the past few days from this!

I got all of the labs back and it is quite interesting! I am definitely a weird one and I actually find it hilarious. Labs don't add up to a connective tissue disorder at all. The one thing that I keep coming back to Rheumatic fever and the PCP and her assistant agreed. They are sending me off to a cardiologist tomorrow. She would have had me seen today but I couldn't get in. I guess they will be checking my heart to see if anything shows up. At this point, even if not, I think I want to try some antibiotics and see what happens. I'll be sure to load up on the probiotics of course.

I also have no idea how the hell my CRP and Sed Rate is normal. I am soo inflamed it is not even funny.

ANA Positive 1:320 Speckled
SED Rate 10 (0-20)
CRP 0.1 (0.0-0.7)
ASO 182 (0-168) HIGH This is the strep infection titers, so I definitely had strep in December.
RA <15.0 (0-30) Negative
DNA AB Double 1 (<4) Negative
SM Antibody <1.0 (<1.0) Negative
RNP Antibody <1.0 (<1.0) Negative

C3 Complement 122 (90-180) Normal
C4 Complement 33 (16-47) Normal
CH50 Complement >60 (11-60) HIGH This is low in SLE, Sjogren's etc, so I think I've ruled those out with this result. Can be high in rheumatic fever! Not many conditions make this one high.

Sjogren's Antibodies:
SS-A/Ro AB <1.00 (<1.0) Negative
SS-B/La AB <1.00 (<1.0) Negative
Histone antibodies 1.3 (1.0-1.5=Weak Positive)

Chlamydia Antibodies:
C Pneumon IGM, IGG, IGA All Negative
C Trachomat IGM, IGG, IGA All Negative
C Psittaci IGM, IGG, IGA All Negative

Mycoplasma Antibodies:
Mycoplasma IGG <0.90 Negative
Mycoplasma IGM 176 (<770) Negative

EBV antibodies: These are always high for me because I had EBV when I was 16.
EBV Capsid IGG 3.76 Positive
EBV Nuclear IGG 2.80 Positive
EBV Capsid IGM <0.91 Negative

Acute rheumatic fever can account for both the high ANA and the high CH50. Also I posted on Jan 22, that was getting terrible chest pains and PVC's. I told the PCP this and she said I just have so much going on, that I absolutely need to see the specialists. Wow I couldn't agree with her more. Wish me luck tomorrow at the cardiologists.

Erythema Nodosum More Pics

2012-01-22T18:18:00.000-05:00

As this progresses, the red hot, painful nodules are now becoming large, bruised nodules. Unfortunately right when I thought I was getting better, new ones formed the other day. Tonight I am feeling better again, but who is to say that a new crop of them won't form tonight.

The main symptoms associated with Erythema Nodosum is pain, swelling, joint pain, an overall sick feeling, pain, pain, pain and more pain. I have not been able to wear shoes for at least a week and have been sporting my lovely slippers everywhere I go. Sleeping is not easy either. If the sheets touch the spots, it hurts like hell.

I have been researching and these painful lumps may very well give me the answers I have been looking for for the past 11 years of my life. I almost feel like crying in a way. Lately my husband and I have been praying a lot for healing, guidance, hope and strength to get through these times. I asked God to show me anything that may help me to find out what is really going on. I kid you not, but just a few days later these bumps showed up. When I realized what they were, it was like a brick of information struck me upside the head (haha). Maybe I won't get all of the answers I am looking for, but it very well is leading me down a new path. For a very long time I have not had any new leads and have been just chugging along doing mostly nothing new.

Tomorrow I may find out what is going on, or not. Two diseases that can cause these bumps are two diseases that can also cause POTS. Coincidence? Maybe, maybe not. For once in the past 3 years I am actually feeling a bit of hope of finding some answers. Then in another 5-6 weeks I will have the genetic test results back as well. It is exciting times for me.

Just to note. My heart is skipping beats left and right and I'm getting a lot of shortness of breath today as well. Not fun.

Erythema Nodosum: Confirmed

2012-01-21T00:43:00.000-05:00

I managed to get in to see a dermatologist really fast. If you tell them you have a very painful nodule on your skin, they think it's shingles and will see you right away! Well I did not have shingles, but he was glad to see me any way. He said this is definitely erythema nodosum (yay for google!) and that he had only seen it a few times in his years as a dermatologist. Online it states he has been practicing for over 30 years...

He really didn't know what to do with me, so he sent me off to a rheumatologist that is literally next door. After some pressure and calls into the rheumatologist, he was able to see me this morning in a brand new location. I swear it was divine intervention because the earliest appointment outside of this one was February 23!

I went there expecting the worst, but it turned out to be the best mainstream doctor I have ever seen!

I was getting ready for the insults to start flying as he walked into the room. "You are fine. This isn't even that bad. You look great. Oh get a job and see ya!" But it went so much better than expected that I almost cried in the office with him. He knew what adrenal insufficiency was and he understood the difference between physiological and pharmacological doses of HC. He even knew what POTS was! I nearly fell out of my chair at that point. haha The funny thing is, is that this doctor does not have very good reviews online. People have said some bad things about him, but most of the responses were specifically on how treatments aren't working. Who do you blame in those situations? The doctor, the medicine, our shitty pharmaceutical based health care? POTS doctors have this same problem. The solutions aren't solutions at all. Ugh.

Well this doc may not have solutions that work for RA, but dammit he knows exactly what needs tested for EN... He was personable and a nice guy. I can't say that for a lot of the docs I've seen over the last 5 years. haha! I think it helped erythema nodosum is a real condition that I can not make up. I am not faking in anyway and it generally means something is going on in my body. This doctor may not have been so nice if I had just come in with generalized pain, but who knows.

I went to this guy because I wanted to rule out some of the bad things EN can be caused by such as cancer, sarcoidosis, connective tissue disorders, infections and a few other bad things. Oh boy did he satisfy that need. He has ordered a ton of bloodwork mostly checking for autoimmune issues like Sjogren's Syndrome, Lupus, RA, but also infections like Streptococcus, EBV, Chlamydia, Mycoplasma and more. I got all of that done today. He also ordered a chest xray to rule out sarcoidosis, which could be a real possibility. In the very least I could have Lofgren's Syndrome.

He took one look at my leg and went, so I imagine your legs feel numb and tingle a lot? How often does that happen? I was sort of caught off guard by his questions because I have had tons of doctors look at my legs and not say a damned thing. haha I told him quite often and that I take B12 which helps some, but I have been slacking big time lately. The doc said he believes I have neuropathy just by looking at them. I assume it must be the discoloration in them, which could just be the blood pooling us POTSies get. We will see!

I went to the hospital and got all the blood work and the chest xray done. I was trying to read the woman helping me with the xray to see if they saw something, but I couldn't really do it. I will probably find out Monday if they found any enlarged lymph nodes in my chest. If so, then I think it's pretty much guaranteed I have sarcoidosis (at least the acute form of it) and then we can go from there.

Erythema Nodosum: Yet another "skin" ailment

2012-01-15T21:38:00.001-05:00

Well this is my first health update in a long time, but I feel I need to come out of my break and document this here.

I have developed what I believe is erythema nodosum. Here's the most sensible description I have found on it.

Erythema nodosum is a type of panniculitis that affects subcutaneous fat in the skin, usually first evident as an outcropping of erythematous nodules that are highly sensitive to touch.1 Most nodules are located symmetrically on the ventral aspect of the lower extremities. (Source)

I will be calling the docs tomorrow or Tuesday.. I want to get an official diagnosis and then get the followup labs/xrays done to make sure there aren't any more serious underlying issues.

How did all of this come about?

It came out of no where. I am not chelating or do anything special for my health at the moment.

Yesterday morning I woke up with a terrible pain in my ankles and in my wrist. It's been really cold, so I thought that maybe I was shivering in the middle of the night and I had strained a muscle. All day I was thinking, "wow my ankles are killing me", but I didn't even take a good look at them...

Right before bed, they were hurting so bad, I finally had enough of it and took my socks off and saw what looked like bruises. I pushed on them a bit because I'm apparently sadistic and I nearly jump through the ceiling. I ran into the other room to turn the light on to take a closer look. The areas on my feet/ankles that were sore, were bright red, swollen and hot to the touch. My husband immediately thought of gout and I went to bed thinking maybe that was it. I was too tired to do any research.

I woke up and started my journey. I ruled out gout pretty much right away because what I had was symmetrical on both sides of my feet. I had 2 red, swollen, hot, lumps just under the skin on the tops of my feet and on the side near my ankle bone. I also have one on my shin. Gout just does not present itself like that at all.

Eventually after some more reading I found Erythema Nodosum and I believe with great certainty that is exactly what I have now. Why? Who the hell knows? lol This is what happens when your body is falling apart and no one knows what is wrong. You start to manifest more problems as your body desparate tries to communicate to you that something is seriously wrong.

I know something is wrong, but I need help here!

The prognosis for this isn't bad. It's just a lot of pain, swelling and uncomfortable days ahead. Once it is out of the pain stage, these spots will turn dark like a bruise and stay like that for months. It is a slow healing condition and I hope I don't get them again. This is awful!

Some serious conditions can be an underlying result of the EN, so it's important to have everything ruled out and that's why I need to go to the docs for this one.

Causes

Common
Idiopathic (up to 55 percent)
Infections: streptococcal pharyngitis (28 to 48 percent), Yersinia spp. (in Europe), mycoplasma, chlamydia, histoplasmosis, coccidioidomycosis, mycobacteria
Sarcoidosis (11 to 25 percent) with bilateral hilar adenopathy
Drugs (3 to 10 percent): antibiotics (e.g., sulfonamides, amoxicillin), oral contraceptives
Pregnancy (2 to 5 percent)
Enteropathies (1 to 4 percent): regional enteritis, ulcerative colitis
Rare (less than 1 percent)
Infections
	Viral: herpes simplex virus, Epstein-Barr virus, hepatitis B and C viruses, human immunodeficiency virus
	Bacterial: Campylobacter spp., rickettsiae, Salmonella spp., psittacosis, Bartonella spp., syphilis
	Parasitic: amoebiasis, giardiasis
Miscellaneous: lymphoma, other malignancies

Mine will likely turn out to be Epstein Barr virus (because I had a flareup with that nasty bronchitis I had around Christmas) or nothing at all. But I just have to make sure and rule out some of the others like strep, sarcoidosis, lupus or anything else like that. It's never dull!

23andMe Genetic Testing

2012-01-10T09:53:00.000-05:00

For Christmas I asked for 23andMe's genetic testing available for $99 plus a 12 year subscription to their service. I was so happy to see my mom handed me the money to get it done and today I collected my saliva sample and have shipped it out.

The results will take 6-8 weeks, but I hope it gets here sooner. I am soo damn excited it is not even funny. This test will let me know A TON of things. It will take me weeks, if not months to sort through all of the raw data included, but that's ok. I have a lot of time on my hands. One really good test now available in the latest (V3) chip of 23andMe is APO E. They now test to see if you have APO e3/e4. This shows your body's ability to detox and those with APO E4 have an increased risk of Alzheimer's and it has also been found in children with Autism.

Looking around online, it also tests a lot of Amy Yasko's methylation pathway SNP's as well as DBH SNP for genetic POTS.

Finding out my APO E is well worth the $99 and I'll get so much more out of it.

Could I get your help? UJAM Singing Contest!

2011-12-15T00:41:00.000-05:00

It's been a long time since my last post and it's because I have been busy singing. I am constantly learning new things and trying to challenge myself to sing better and better. POTS certainly sets me back at times because breath control assumes you have a normal functioning autonomic system. hehe!

After a lot of soulsearching, crying and days of feeling lost and hopeless, I have decided that singing is what I need to do with my life. Even if I am not successful and make no money at it, it does not matter. I need to sing because it makes me feel whole and happy.

I have entered a contest and I desparately need your help in order to keep my entry in the Top 10 until February 5th. For this entry I remixed the instrumental, wrote and sang the lyrics.

You can listen to and vote for my song at this link.
http://www.ujam.com/songs/cTzD7kg6ptWk

To vote for it, just click on the Facebook like button on that page. If for some reason you do not have a facebook page, then please consider sharing it on other forums, blogs, on your facebook wall and on twitter. I cannot do this without you guys!

I have almost a full 2 months to keep the competition from taking over my spot. This will not be easy at all, but I have to try to do this. Hans Zimmer and Lorne Balfe, who are both award winning composers, will be judging the entries!

And with all of this singing stuff, I am finally showing my face too. Please check out my video and it's nice to be able to show you a more personable side of me. Text can only do much.

Goodbye:Taking a break

2011-08-10T05:41:00.001-04:00

I'm taking a break and focusing on other things like singing. I need to just get away from all of this and do something of real value. I will continue to do what I do with my health, but as far as this blog and stuff I'm sick of it all.

Good luck to everyone.

Round 7: DMPS Ends! Also Another Rant

2011-08-07T12:05:00.000-04:00

This round was a little more interesting than the others. I added in 1000mg of EDTA once in the morning. I did feel a little blah at times, but no hives so I am happy right now. I went a full 6 days and quit half way through today to give my body some rest. My minerals were definitely low a few days ago so I upped my normal doses of minerals. This made the cramping in my feet go away, but I will continue on this higher dose for a while.

We will see what happens in the next few days. Will the hives make an appearance this time around? That is the million dollar question...

I know I haven't been posting much lately. I haven't even been returning emails for the most part. I have blogging and forum burnout. I am sick of the insanity that occurs on health forums. I am sick of talking about being sick and just want to let some of this go. I'm ready to just completely stop going to all forums as I realize they make me angry at times. Other times I am saddened because I see the same names, still sick. Yet I get mad because I see these very same people giving advice on the very things that are NOT helping them. Are you %&#^@ kidding me?

On this blog, I do not lie to you and tell you what you want to hear. In fact I probably tell you a lot of things that disappointment you. Well the truth is the truth and I do not sugar coat things. If you want that, then I'm sure I could dig up a few forums and blogs you could read instead of mine. I am here to actually get better and to hopefully get people to start looking into their own health problems.

What I always tell people is to research yourself. I am not responsible for you. You are. Google has made researching so easy these days. You simply click on the more tab at the very top and choose Scholar. That will specifically bring up medical journals, studies and cases.

The one thing I am absolutely sick of doing is having to defend myself and my actions, thoughts etc. If you don't want to hear other people's opinions, then don't ask for them. If you think what I'm doing is stupid, then great, I hope you can figure out what is wrong with you and recover fully. It seems like some people have gotten the wrong impression from me. They think I am out for revenge, when that is far from the truth.

I wrote this in an email to someone I know...This is how I feel when I try to talk to people about their health issues:

When a mother grabs a child's arm as they start to walk out in the middle of the street with traffic, is she being mean and abusive? Absolutely not! The mother was in fact protecting their child from getting hit by a car. The means at that moment were necessary or her child could have been seriously injured. That's sort of how I feel on a daily basis. I'm watching people walk out in front of traffic and I'm telling them to stop and look both ways, but they just yell at me for warning them. "There's no traffic on this road you stupid Birdlady". "Oh your husband got hit here last week? Well you must have crossed at a strange time because I've never seen cars here before". Meanwhile cars are beeping their horns at them and are nearly hitting them...

I hope that in a few years, this blog will be shut down and my recovery story will be on the front page. When I'm cured, I will be done with all of this and will likely never visit another health forum or website ever again. Birdlady has been my sick name for years and I will lay it to rest when I am healthy.

Stopping Beta 1,3D Glucan

2011-08-02T16:08:00.001-04:00

I have never had a supplement effect me so much before. Beta 1,3D Glucan is supposed to boost the immune system. I am always a little leery of things that do this, but wanted to give it a try.

Beta 1,3D Glucan is supposed to do the following:

Beta-1,3D Glucan works by activating immune cells known as macrophages, neutrophils and natural killer (NK) cells. These are your immune system’s first line of innate defense. They are responsible for finding, identifying, and consuming foreign substances in the body. Macrophages also control the activities of other important cells in the immune system.

To maximize the benefits of Beta Glucan, you should always take it on an empty stomach. Wait at least 30 minutes before eating or drinking anything. A small amount of pure water should be used to swallow the capsule. (No coffee, tea, juice, etc.).

The amount of anxiety and revving of my system was horrific. I actually had to take a beta blocker yesterday and I'm done with this supplement now. I think I took it for about a 8 or 9 days. Whatever arm of my immune system it boosted, directly impacts my POTS and anxiety, hyper feelings. It really makes me think my POTS is autoimmune in origin.

All of the websites about this stuff, say it cannot overstimulate the immune system or cause issues. WRONG. Why is it that my husband and I always somehow experience "what can never happen" when we take drugs, supplements and vitamins?

This website states: "Our Beta 1, 3-D Glucan is clinically proven to increase the key part of the immune system that affects anxiety and the ability to go into a deep restful sleep."

Yeah it made me a raving lunatic and could not sleep the whole night through at all. I had so much nervous energy, I wanted to scream and jump off of a bridge just for shits and giggles. I made up tasks for myself so I wouldn't freak out. I think this is what a manic episode must feel like.

I took the "best" stuff out there so it wasn't about a bad batch or contaminates or anything like that. Whatever part of the immune system that crap turns on, is exactly the immune arm that is attacking my body on a daily basis to give me POTS.

Round 7: DMPS Begins

2011-08-01T18:46:00.000-04:00

Today I started round 7 of DMPS. I am taking 10mg of DMPS, 3 times a day. I don't get too focused on taking it every 8 hours because I like to be able to sleep at night. Last round I also took EDTA in the morning and I am doing this again since I didn't get hives last time.

Forgetting HC Doses

2011-07-28T14:32:00.000-04:00

Ever since this last round of DMPS, I have been completely forgetting HC doses. I woke up today and I have no idea if I took it or not. I don't think I did, but then I don't feel like I did not. Hmmm Is this is a good sign or am I just getting more forgetful? haha

I think I could probably go down to 12.5mg without any consequences. Something has changed for sure. One day I only took 5mg and did not realize it until 11pm. I am cautiously optimistic. I'm not sure what this means for me right now and I'm just playing it by hear.

Also I should start up on DMPS again here real soon. I never got any hives! I had some skin dermatographia, but I can handle that without any issues.

I should also note that I have been trying a few other things lately. Right now I am taking Body Biotics probiotics. It has definitely slowed my bowels. Maybe a little too much. I am also taking something called Beta-1,3D Glucan. This is supposed to help the immune system. It's all things my husband researched and told me to take. haha!! I am so thankful my spouse cares this much.

Singing Is Not POTS Friendly, But I Don't Care Anymore

2011-07-14T06:43:00.001-04:00

Those with POTS know that controlling your breath for what is needed to sing properly, can be really bad for the heart. Well I do not care anymore and I am once again getting more serious into my singing and vocals. If you haven't been following me for long, then back in 2008 while I was chelating for the first time I started taking some local vocal lessons. They were really pretty awful. In some ways I think I was better than the teacher and all she talked about was breathing. /sigh That's really the only thing these teachers talk about and I can get that type of advice on Youtube. There are hundreds of vocal coaches on Youtube making videos...

Most local vocal teachers are really meant for kids who have no idea what they are doing and it's mostly for chorus or practice. There is only 1 teacher in the area that sounds promising, but it is just too far away and with my health issues, I'd never make it to lesson. What I want is a teacher who will sit down with me and help me increase my range, strengthen my head voice and other more tehcnical things. The one good thing that came about the lessons was it boosted my confidence. Just this alone makes my singing about 1000 times better. When I'm insecure about it, I tense up, can't breathe and it just sounds horrific. Singing in front of her and a few others, really helped me there. However it's been so long, that I need to get back into practice with it. Karaoke night anyone? lol

I have to give credit to someone I know from an online game. Hi Ray! He pushed me to make my first cover song and to post it on Youtube. Listening to that cover now (which is about a year old), I can tell I have made a lot of progress in my singing since then. I've gotten nothing but positive feedback on Youtube, so I guess I must be doing something right. Singing runs in the family for sure. Every single Aunt and Uncle on my mother's side sings, plays guitar or at least has done it at some point in their lives. My mom sings very well too and I guess growing up around all of this singing made an impression on me. During high school, I decided to go into band instead of chorus. I always wonder if I made the wrong choice, but at least now I can pick up where I left off and start singing again.

When I'm singing a song, sometimes I can just feel the norepinephrine begin to course through my veins. I think this is normal for any singer to an extent, but with POTS it is like I have downed 10 espressos. Sometimes my heart rate does affect my singing. It can cause shortness of breath and make passages sound as if I am out of breath due to bad technique, but it is simply because my heart rate is 170 at the moment. haha Guess what though, I do not care anymore. I am learning to control my POTS while singing and to push through it any way.

Above I embedded my latest cover song, which was requested from someone on Youtube. It is from the band Epica, a Dutch symphonic metal/death metal band. I don't like the screams and grunts in it (don't worry I don't do those), but the other vocals are beautiful and I give it my best shot. I recommend listening to the original to get an idea of how it is supposed to sound.

I may start putting some of my covers up here. Let me know if you think that's a good or bad idea. I want constructive feedback. Thanks!

NO HIVES!

2011-07-13T10:55:00.000-04:00

I have been waiting and waiting and waiting to make this post because I did not want to jinx myself. Well I think I can now officially say I did not get hives with this latest round. This is really good news to me! I will continue at 10mg DMPS from here on out until I am brave enough to raise it again. :)

Round 6: DMPS Ends

2011-07-07T06:54:00.000-04:00

I went a full 5 days and decided it as time to call it quits for now. No reason in pushing this too far. So far, I have no hives but that means nothing. They can literally pop up out of no where, so I am just getting ready. I have been taking my hives regimen throughout this entire chelation round to see if that makes a difference.

My vision is definitely changing. The glasses I wear are pretty old. I've had my contacts prescription changed several times since I got the glasses. Glasses just get so expensive to replace, so I've kept these as my lounging eye wear. Well now I am not seeing the same out of them. I think in my right eye I am seeing better. My left eye still seems quite blurry. When I put my contacts in, I am also not seeing the same out of both eyes. This one is significantly harder to figure out, so I'm going to be heading to the eye docs soon enough. I am due for more contacts and my eye exam is over a year old so I have to get a new exam to get new contacts. I am curious to see what has happened with my eyes. They have been getting worse every year. In the past 3-5 years, my eyes have gotten quite bad. My right eye is -5.75, left eye is -5.25. If anything, I think my right eye is about the same and my left eye is catching up to the right. haha The left eye has the "we think it's a torn vitreous but we aren't sure" and something called "white without pressure". However most places say both are benign. Still makes me wonder about it all at times with my other health issues.

The heat has just been terrible. This is a bad summer for all POTS sufferers out there. I definitely had heat exhaustion the other day and my temps have been well over 99. Earlier today I was pushing 99.2 and that was after getting a cold bath.

I just keep chugging along here. Lately I've been putting almost all of my energy into singing. I want to get really good and possibly make some music. That's been my life's dream for many years now. Now that I am feeling a little better, I am motivated. I think my voice sounds a lot like Sharon Den Adel from the band Within Temptation. She's more comfortable with her head tone, but I'm working on it. My singing has come a long ways over the years, which is mostly self-trained. Those few lessons I took years back were nothing.

Heat Intolerance Is My Top POTS Symptom

2011-07-03T19:01:00.002-04:00

There was an interesting post on dinet.org the other day. A poster asked us to list our top 5 POTS symptoms that cause problems for us on a daily basis. I was certain everyone would have tachycardia on their list, but that was not the case. How can you have POTS (postural orthostatic tachycardia syndrome) and NOT have tachycardia or heart symptoms on your top 5 list... Am I missing something here?

If you were to list your top 5 symptoms, what would they be? Fatigue? Pain? Gastrointestinal issues? Let me know what all of you are going through. I am very curious to see how different yet how similar we are too.

My top 5 symptoms are as followed:

Heat intolerance
tachycardia with shortness of breath (when standing of course)
anxiety, "crazy" wired feelings
shakiness/tremors
exercise intolerance

I do not know why the heat is such a problem for me, but cooler weather or air conditioning makes all the difference. In the winter I feel pretty normal and most of the other symptoms listed go away. I still have tachycardia but the heart rates are not nearly as high and the anxiety is never as bad either. Unfortunately exercising is bad because that makes your body temperature increase, so it goes back to the heat intolerance.

Now many people would insist that I have adrenal fatigue and need to go on "adrenal support". No you are wrong. I will continue to repeat this as many times as I need to until I am blue in the face.

POTS is not adrenal fatigue. POTS is not adrenal fatigue. POTS is not adrenal fatigue. POTS is not adrenal fatigue. POTS is not adrenal fatigue.

Do some POTS patients have symptoms that mimic those with adrenal issues? Absolutely, but it does not mean we all have adrenal problems and need hydrocortisone, florinef or "adrenal support". It is simply a THEORY that has been repeated so many times, that people have started to believe it as truth. Those who perpetuate the THEORY usually have never ever had POTS, yet they speak about it as if they are an authoritative source of information. Trust those who have had it for years. Believe me when I say it does not go away with some salt, florinef, and hydrocortisone. If it did I would not be here anymore writing on my blog.

Heat Intolerance is a major problem for me in the summer.

Now that it is summer, I really have to be careful outside or even in the house. I get heat exhaustion so very easily compared to most normal people. Today I believe I woke up with the beginning stages of heat exhaustion simply because we did not have the A/C turned on in our bedroom last night. I woke up with a mild fever, headache and nausea. This is one of the reasons why I do not pay any attention to basal temperatures or even daytime temperatures. For me it varies according to the room temperature. Have any of you ever noticed an increase in temps during the summer? If so you likely have body temperature regulation issues too.

When I wake up in this crisis state, it is very difficult to pull myself out of it without intervening with ways to cool my body down as quickly as possible. Cold baths, ice cold water and air conditioning is the only thing that helps. Once my body finally cools down I am good. I feel completely normal and can go about my day. I know that sounds really weird and perhaps I am an usual case, but I always tell people I really do just have POTS. I do not have chronic fatigue syndrome or hypothyroid. If I fixed my POTS, I'd be nearly 100% better.

This summer has been better than previous years, so I am thankful for that. However I still have a long way to go until I will consider myself recovered or cured.

Update 8AM July 4: Things did not go as well as I had originally thought when I made this post. I continued down the heat exhaustion path for most of the night. At one point I was shaking, had goosebumps, throbbing headache and felt terrible. My temperature was running 99.6. I got an ice cold bath, drank lots of ice water and I still was having trouble getting my temperature down. Finally now after many hours after becoming increasingly worried, I got my temperature down to the low 99's, then high 98's and now it is about 98.4. I still have an awful throbbing headache and that likely will not go away until I sleep for the day. I hope I staved off an ER trip. That would be 2 holidays where I made an appearance. Let's hope all of this corrects itself today. Yes we are running the AC tonight too!

Here's another post I made about heat intolerance a few months ago if you are interested in reading more!
Getting Through the Heat Intolerance

Round 6: DMPS Begins

2011-07-02T16:25:00.000-04:00

I started ~9mg of DMPS yesterday afternoon. So far no hives at all and I am doing great. I have no idea how long I'm going on this round and will just play it by ear. I have enough pills made up for 7 days, but I don't believe I will do that. There were some warning signs of hives beginning to form at the end of day 6 last time, so I think maybe 5-6 days is where I'm aiming.

One thing I've noticed while taking any type of chelator is that it tends to make my bladder hurt. It feels like a UTI or bladder infection, but there is nothing there. At least nothing that my strips can catch. I used to have this many many moons ago. I think before I even started my blog and to this day I don't even know what stopped it from happening. It may have been Vitalzym? The one time I did have an infection, so I will have to keep an eye on that and go get tested if it gets bad.

I am trying to drink enough water to make myself pee at least every 2-3 hours to flush everything out. In the summer there are times where I don't pee much, but I'm going to make myself keep drinking until I do.

Oh I am also taking 1 pill of EDTA (calcium form) in the AM this round to see if that helps or makes anything worse. Our bathtub is testing for lead AGAIN, so that's fun.

Hope: Keeping up with my Nephew!

2011-06-23T17:30:00.000-04:00

For the last 2 days my sister needed me to watch her son for a few hours. I used to cringe when she'd ask me because I was always concerned if I could get through the day. My nephew is really behaved quite well for a 5 year old and he is very laid back and easygoing. Any time I watched him and did not feel good he was very understanding. I know adults who are less understanding than my nephew! HA!

It has been very warm lately and of course I was concerned about my heat intolerance. Can I even stand up outside let alone play with him? Yikes. On bad days just walking to the car would make me feel as if I were going to die.

Well it turned out that I not only could stand up outside, but we were playing tag! We sprinted, yes SPRINTED around the yard playing tag for about 30 minutes or so. I'm happy to report he got tired before me and wanted to go in for a drink of water. :) You can not even believe how excited and happy I am about all of this. It was 83 degrees with very high humidity outside so something is going on with me. Am I cured? Nope, but there is a big enough difference that I have noticed. I have a long ways to go, but this is giving me so much hope and optimism. It is actually a little scary! I was afraid to hit POST on this one. Will I jinx it?!

Last night (after watching my nephew for two days and going on walks at the park afterward, cleaning, making dinner, any other normal duties that need done in my house etc) I did have a headache, but it was gone when I woke up this morning. YAY! I have no post exertional malaise today, although that has never been a big issue for me in the past. It is not quite as warm today, but the humidity is very high. That's usually all I need to feel sick and I am doing well.

Like I said, I am NOT cured by any means, but this is very interesting. I just hope I keep getting better and it doesn't stop here.

Making Progress with DMPS

2011-06-23T13:46:00.000-04:00

I am convinced now that DMPS is what people need to use to feel better. I have talked about it before, but the few people who were "following" Dr. Cutler's FDC who got significantly better ALL used DMPS at some point or another.

Only a few members of FDC even use DMPS because so many of them are fearful of the drug even though Dr. Cutler says it is safe and recommended here, here and here. They refuse to find a doctor to prescribe it, which makes me believe you can't really be that sick! They are afraid it is not FDA approved, which is once again just another excuse to stay sick. (Alert: Amalgams were FDA approved!) Those who use DMPS have less side effects and symptoms and actually seem to legitimately feel better much faster.

Others using DMPS not strictly following FDC who got better as well:
MercuryLife Blog. Read the entire story!
MS - Ten years bedridden - cured by Amalgam removal
Woman was bedridden with CFS
Another person with CFS Cured
Another woman with CFS finally getting better with chelation

DMPS is the common link in all of these stories. Some of them have done other things alongside it too. However these people should not be considered "lucky" or less toxic. When you start looking at stories of those who got truly better, they all used DMPS in some form or another (oral or IV) at some point in time during their journey.

I'm not really following FDC and taking DMPS every 8 hours. I take it when I get up in the AM, mid-day and then at bedtime, so I don't have to interrupt my sleep at all. With an odd circadian rhythm, even at every 8 hours sometimes the doses would fall while I was sleeping. I had enough of that and just decided to take it at bedtime regardless of what time it was. Sometimes it was at 10 or 11 hours out from my previous dose. I don't think it really matters at all and you could probably take it on any schedule and still see some improvements (my opinion only not based on any scientific evidence).

If you are following Dr. Cutler's protocol and have completed double digit rounds of DMSA or ALA and not feeling or seeing improvements, then consider finding a doctor who will prescribe DMPS. It may be the difference of getting your life back. Isn't that the most important?!

The doctor who prescribed me DMPS NEVER PRESCRIBED IT BEFORE TO ANYONE. I am his FIRST patient and my husband is his SECOND, so please do not try to use "well I don't know if my doctor would do that" as an excuse to keep staying sick. If you really want to use DMPS, then you will find a doctor or beg a doctor who is open-minded enough to use it. I actually had to fax my doctor some information that talked about using oral DMPS and after reading it all he had no issues with me trying it out.

In 5 rounds of DMPS I am feeling the best I've felt in 11 years. I am not over exaggerating or making this up at all. Some people may say that it is placebo, but how could a POTS patient make their heart rates not climb as high while standing? ... How could I have less heat intolerance? ...

Is it all good? NO! The hives are still problematic as evident from my last post and I am concerned about it and SJS. The latest set of hives were focused more around my joints (knees, elbows, wrists and ankles) and thankfully I did not have any hives on my neck at all. This made me very happy because I knew I was not going to have any issues with my throat swelling up.

Outside of the hives I have zero symptoms on and off round. Not many can say that about ALA or DMSA and I really don't understand why someone would continue to take something that is terrible at chelating metals... Dr. Buttar says that it is dangerous to use DMSA. Dr. Cutler's followers had a discussion about this in 2009 and rather than scientifically disproving it is dangerous, they just called the doctor an idiot, he doesn't know what he's talking about and he is promoting his own chelation protocol. Um..And how is Dr. Cutler any different? Dr. Cutler sells consultations too...

And to put it into further perspective at least 2 people in this thread are still sick on FDC. I guess your own irrational fear and advice is not working out for you. Stop drinking the Cutler kool aid!

Many people have become fearful of DMPS due to the fearmongering website, DMPSbackfire. For years I thought it was the devil and was harmful because "Dr. Cutler says so". However since DMSA did not do anything for me at all and may even be dangerous itself, I started to question all of that. Now that I'm taking DMPS and feeling better I realize how stupid it was to have an irrational fear of it. The stories on that website really should just be called "when stupid doctors strike" because they were doing terribly stupid things with DMPS like chelating people WITH amalgams STILL in their mouths! How could any doctor even think that would be a good idea?

If DMPS IV's are too scary for you, then you can use it orally too just like DMSA. That's what I am doing for the time being.

I gave my doctor a PDF from this website. I have no idea what this doctor recommends with chelation, but I found the clinical trial of interest and that is what I showed my doctor.

If you are following FDC, let me know what you think about this theory that DMPS is the key!

Disclaimer: As always these are my opinions on things. I am not a doctor and are simply telling you of my experiences and relaying data/materials I have found online over the years. Everyone with a chronic illness should be following up with a doctor and if you are not, then start today.

Mercury Hives: What Can I Do?

2011-06-19T23:54:00.000-04:00

When I started chelating in 2008 with DMSA, I got hives and did not understand at that time what was going on. I thought I had just developed food allergies or something because they lasted for so long. I stopped chelating for about 2 years because I felt really sick and eventually the hives went away on their own. I had changed my diet and part of me thought that was why the hives went away.

Then I decided I needed to start back up on chelation and the hives came back full force.

I knew this was no a coincidence and the hives are indeed directly caused by chelation. In a desperate attempt, I decided to try DMPS to see if it was caused specifically by the DMSA. Much to my dismay, after 3 rounds of DMPS the hives started to show up once I went off-round. This time even more severe than before if you can even imagine that looking at some of the old pictures. In yet another desperate attempt to stop them, I went on Diflucan and took probiotics, but neither of those did anything to stop the hives. In my case they are NOT caused by a yeast flare up or anything like that.

What does this mean? What am I to do?

Hives caused by chelation

I sit here tonight with hives galore. They are so very itchy it is hard to concentrate on anything. Taking benedryl barely touches them and the only thing I feel is deliriousness and completely drugged out of my mind. The last time I had to get a dexamethasone injection and take prednisone for them to stop. Even still, the hives continued on for days while on 60mg of prednisone. This is a serious allergic reaction and I do not know where to go from here. I cannot keep doing this.

With DMPS there is a risk of developing a potentially fatal condition called, Stevens Johnson Syndrome.

"Signs and symptoms of Stevens-Johnson syndrome include:

Facial swelling
Tongue swelling
Hives
Skin pain
A red or purple skin rash that spreads within hours to days
Blisters on your skin and mucous membranes, especially in your mouth, nose and eyes
Shedding (sloughing) of your skin"

Now to be fair, any medication can cause this it seems if the body reacts in such a way, but there have been a handful of cases people have come down with it specifically with DMPS. I guess I am concerned that I may be setting myself up for this because it is an autoimmune disorder and clearly my immune system is confused. I have no other symptoms of SJS, so please do not freak out in the comments!

My next step is to take EDTA and see what happens. The Cutler folk will have you believe that I'm going to kill myself with EDTA, but at this point I need to see if the hives happen on EDTA as well. If they do, then I seriously have no idea what I'm going to do. With the amalgam tattoo gone, I thought this would stop. No such luck in my case.

I may start the EDTA tonight and see how I do.

Update On Tooth

2011-06-17T20:57:00.000-04:00

Well the weird pain I am getting is not from the tooth with the metal post. It seems that either 1)I have brushed my gums so hard in the past 2 months that I have caused gum recession or 2) getting the amalgam tattoo removed did indeed cause some gum recession or 3) chelation is doing something to the gums.

I guess it could be a combination of all of those things. I just find it SOO strange that my dentist used to say how GREAT my gums looked and now I have severe recession in the exact same area where the gray tooth and amalgam tattoo was removed.

I still have a metal post in that tooth that needs taken care of and that can only be resolved with a crown. That's $1200 I don't have.

I just keep on going I guess. I have hives tonight and it is NOT looking good. I feel no need to put more pictures of the hives on here because there's more than enough already. haha

Heavy Metal Chelation Round 5: DMPS Ends

2011-06-17T10:54:00.000-04:00

I went a little longer this time, (~6.5 days) but as soon as I noticed a hive, I stopped. I immediately started my "here comes the hives" supplement/medicine regime. I took a benedryl, zyrtec, 3 grams of Vitamin C and 2 grams of Quercetin before bed. I woke up and I was good. No hives and so far I haven't had any more develop. Last night I took more zyrtec, vitamin C, quercetin and half a benedryl. So far so good. I think I have a few mosquito bites though and it is hard to tell the difference between them and hives. haha

The good:
I think I am already seeing improvements on the DMPS. I hate even say this or type this because I don't think I've said these words on my blog, ever?

My heat intolerance seems a tad better. 5% better
My heart seems less aggravated at times. 3% better
My vision is getting clearer again.

The bad:

Obviously the hives are bad. Hopefully they stay away.
I think the DMPS is reacting with a metal post in one of my teeth.

I just keep chugging along here and see what happens. I am off to the dentist to see what they can do about this metal post in my tooth I forgot about it. Of course they are supposed to be "inert", but I'm not so sure about that...

People Are No Longer Open-Minded

2011-06-10T12:43:00.001-04:00

Over the past 4 years I have realized that people in the alternative health community are no longer open minded. Each forum has their "go-to" way of doing things and if you question or stray from it, you get yelled at, screamed at, banned or told to go away because you are being disruptive. Well excuse me for asking questions about the treatment or protocol that you sit and defend for hours a day. I thought maybe you had something to back up your claims or perhaps you yourself are feeling better? Oh no you aren't feeling better?....Hmm Well then why would you defend something that has not made YOU feel better? I truly cannot understand it and would like an explanation.

I don't care what it takes for me to get better. I don't care who I offend or who I piss off to get better. With this attitude and determination, one day I will be better and YOU WON'T BE because you are stuck listening to some stupid theory that has been dis-proven time and time again. Yes I am looking at you Dr. Cutler frequent dose chelation followers; I am looking at you Natural Hormone Adrenal yahoo group followers; I am looking at you Stop the thyroid madness followers; I am looking at you Rich methylation protocol followers. All of you are keeping people sick by only allowing others to discuss your protocols and if anyone questions something, you immediately shut them down. If someone doesn't respond to a treatment in the way you think they should well they did it wrong. They didn't follow it right. They didn't take enough supplements or the right supplements. They didn't raise their HC fast enough. They didn't raise their thyroid meds fast enough. They didn't jump through enough hoops. Clearly they didn't stand on their right foot, with their hand in the air, then count to 47, then do a perfect backflip and catch a dove flying through the air. I'm only partly joking here...This is how bad it has become with all of the excuses that are continuously made up to keep "their' treatment from looking bad.

Well I challenge any of you who defend all of this crud (I see it all over the place, so don't try to say you don't defend this crap) to really think for a second... Are you really better being on all of these hormones or after years of doing FDC? Are you able to live a normal life now without daily complaints? Some of the most active people on the forums GIVING ADVICE are the most sick. Hmmm I guess your own advice isn't really working out for you, so please don't try to tell me I need to do x,y,z for the 10th time. When I explain that I've already done it and it did not work, they never want to hear it and continue to say I didn't do it right. /sigh Ok, sure whatever you want to think to feel better about yourself.

At this point, I think that's what all of these forums are really about. They are not to get better, they are there to bitch, complain, moan and feel good while swimming in a sea of other sick, dying fish. Well we are all sick, so really what prize have we won?

After all of these years, I am so sick of these forums, yahoo groups and other people who think they know everything. We don't! Humans do not know everything there is to know about the body. It is much more complicated than any of these forums made it out to be. Adrenals cause all fatigue, hypothyroid causes all weight gain and if your ferritin isn't some magical number, that's why you can't take thyroid meds! Yes clearly you are right because you just made it up out of thin air without any scientific evidence to even back up the THOUGHT of this being true. If we really knew everything, then these forums would be dead. Everyone would be cured, feel good and leave. Yet there are the same names for years on there, with the same health problems, complaining about the same symptoms and still ask for and give advice. These are usually the ones who defend the forums/protocols the most.

Stop pretending we know everything and start letting people ask questions or question protocol. That is after all the only way we will get better. New information is a good thing because science is always learning new things. If you are sourcing Dr. Jefferies, did you actually read his book? My next rant will be on what I've learned from, Safe Uses of Cortisol. It absolutely DOES NOT SAY what these adrenal folk say it does and I need to call them out on it.

Yes this rant was spurred by something that occurred on a forum. If you peruse these forums, you know who I am on them. It's not hard to find birdlady. :) I'm the one always questioning everything including things I used to believe as truth. I hold myself to this as well. If I theorize something and it doesn't work, then I let you all know and move on. As you can see, I've taken down most references to Dr. Cutler's protocol. If you have followed me long enough, you will know that I used to think FDC was the only way to chelate. Now I'm not so sure and I don't think it helps people especially in the tiny doses that are now recommended. 1mg of DMSA, ALA and DMPS is laughable.

Round 5: DMPS Begins

2011-06-08T18:51:00.000-04:00

Well here we go again. I started Round 5 of my DMPS chelation around 11:45AM and will be going for at least 3 days. I may try to do longer rounds, but we will see. I have drastically lowered my dose to 10mg capsules every 8 hours to see if I still break out in hives. So far so good, but on round is never my problem...

No Longer Trying to Come Off HC

2011-05-29T19:50:00.000-04:00

This was likely my last experiment. I guess I have adrenal insufficiency of unknown origin and I need to be done with it. Lowering my dose caused major high DHEA symptoms and my emotional well-being started to deteriorate. I finally just went back up to 15mg and am just done with it all. I really wish my doctor had done the appropriate testing to see if I really had a problem because now I cannot come off of it to test. Thanks doc! There is really only 1 thing I can test for while on HC and that is 17OH progesterone. You have to test it first thing in the morning, BEFORE taking your HC for the day. You want to see if this is elevated in the AM because if so, then that's pretty telling the pathway is getting backed up.

Once I went back on the 15mg of HC, not taking DHEA gave me major depression. It took about 3 days for it to appear (probably the amount of time it took for all of that extra DHEA to go down) and I felt like dying.

Now I'm back on 12.5mg DHEA and my normal 15mg of HC. Glad the latest experiment is over with.

Stopping the DHEA For Now

2011-05-19T03:00:00.001-04:00

Ever since coming off the Pred, I decided to just keep going with the HC too. If I can get off of this then in a few weeks I can get the appropriate testing done for late onset congenital adrenal hyperplasia (LOCAH) as well as looking into getting a stim test done.

For those who do not know what LOCAH is, basically your body has enzymes which are needed to convert your hormones into cortisol and aldosterone. You can look at this hormone pathway chart on this page to see every step takes an enzyme.

If you are deficient or missing one of those enzymes, then the step before it gets "backed up" and you are unable to create enough cortisol or aldosterone in the body. Your body starts dumping this extra hormone into DHEA and you grow extra hair on your body. Some have it so severe, the hair growth is very thick, their periods stop and some women (if they have it at a young age) have weird changes to their genitals due to the androgens. If I have this, mine is not severe as I did not have the really thick hair growth, but I am definitely more hairier than most women.

This testing I should have had done in the beginning. My natural doctor conveniently had no idea what he was doing when he said my 17 OH progesterone was normal even though it was slightly elevated during my follicular stage of my cycle.This should NEVER be elevated and I should have immediately been referred to an endo. A slight elevation means serious issues needs ruled out. There is no way around this and this doctor failed.
http://www.nejm.org/doi/full/10.1056/NEJM199009273231301

"A substantial proportion of women with hirsutism have mild defects in adrenal steroidogenesis, revealed by an ACTH stimulation test, that are indicative of late-onset (nonclassic) congenital adrenal hyperplasia. Measurements of basal steroid levels are not helpful in differentiating among the causes of increased androgen production in such patients and may be misleading. (N Engl J Med 1990; 323:849–54.)"

"Four patients (two in group 2 and two in group 4) as well as three normal women had elevated basal plasma 17-hydroxyprogesterone levels. Thus, three of five patients considered to have 21-hydroxylase deficiency would not have been identified if only basal plasma 17-hydroxyprogesterone levels had been measured."

If you read that whole study, you find out even women with normal basal levels of DHEA and 17-OH progesterone were found to have mild forms of LOCAH and that a stim test is absolutely critical. My natural doctor is completely out of his mind when he said my levels needed to be in the 300's to be suspect. I would have been considered elevated even though it was only a few points above.

In those with elevated 17 OH Progesterone, it means the problem lies with the P450c21 enzyme. This is the most common form of LOCAH. LOCAH is sometimes misdiagnosed as PCOS too. If you have PCOS you should immediately get tested.

Why Have I Come Back To This?

Since lowering my HC, I am getting hairier. This could be happening because ACTH is starting to rise again which is then stimulating all of those pathways. If I am deficient in one of those enzymes, the "backing up" process is starting to occur and thus hair growth. The other day I was looking in the mirror and I was shocked at how dark my side burns are getting. It is actually noticeable now! Even my husband said something to me and he did not know how to approach the conversation without hurting my feelings. He says my upper lips is growing fast too and I have been complaining about how oily my hair has been (it gets dirty in 10 hours) and I have been breaking out like crazy too. I have another weird symptom but would rather not go into that right now. :)

So no more DHEA for me. I do not think DHEA alone is causing this in me. I think it is from me lowering my HC dose to 10mg/daily. I am doing ok for now on that dose, but the mornings are getting harder for me. I no longer wake up feeling rested and I could go right back to bed if I wanted. I will try to fight through this for as long as I can. This time I am really determined. I have no nausea so that is excellent.

I'll let you know how all of this goes. I hope I am overreacting! haha

I haven't chelated since the last hive incident. We are out of pills, so just waiting to get some more. The good news is that we are both (my husband is also chelating with DMPS) seeing improvements already. It is very slight, but it is more than I can DMSA ever did for me.

Off the Prednisone

2011-05-14T02:20:00.000-04:00

Well I am off the prednisone and back on my regular dose of hydrocortisone. I am soo glad. I think I am finally back at my baseline as far as symptoms go. It took a couple days to make sure I was getting enough HC in me from the transition. I tapered much quicker than originally intended because I knew I would just go back to my normal HC dose. It wasn't like I wasn't on steroids in the first place. My adrenals are already suppressed, so the risk of further suppression is not there.

I took 60mg for 3 days, then 40mg for 2 days, then 20 for 1 day, 10mg for 1 day, 5mg pred + HC for 1 day, then my HC as normal without any pred. On the day where I took 5mg of pred, I felt a little off for sure.

Honestly that is really it for now. My hives are better and I'm just waiting to get some more $ to get a refill on the DMPS.

What It's Like to Be On 60mg of Pred... High Cortisol Hell

2011-04-27T09:59:00.001-04:00

I think everyone (even some of those crazy hormone replacement doctors) would agree that 60mg of Prednisone is over replacement and is a pharmacological dose. 60mg of Prednisone is the equivalent of about 240mg of HC. I have never been on this much steroid before in my entire life. Add in that 10mg Decadron injection (about 600mg HC equivalent) and I am swimming in cortisol right now. This post is meant for those who are having trouble figuring out their current HC dose. However do not take anything I say as medical advice and before making any changes to your current medicines, be sure to bring it up with your doctor. Dosage changes in those with adrenal insufficiency is serious business and you should not be making changes based upon what someone says on a blog or forum.

Over the past few days I have had the chance to experience high cortisol symptoms. Interestingly they are a lot different than I was expecting which is why I wanted to write up this blog post. It may help some of you who continuously feel the need to increase your HC dose because you "just aren't feeling quite right." More may not be the answer.

First off, emotionally I am actually not too too bad. I was expecting a lot worse! I keep finding myself just staring off into space which is better than being angry or raging all the time. I have been a little agitated, but overall the fatigue has been so unrelenting that I am in fact too tired to be agitated. The fatigue is incredible yet at night time it is very difficult to actually go to sleep. I am exhausted and I am normally not like this at all. Any one who thinks fatigue is simply a low cortisol symptom should reconsider this position. For me high cortisol has taken fatigue to a new level I never knew existed and I used to sleep 16 hours a day before going on HC. On the pred, I feel like a blob and very lazy too. If someone were close to their optimal dose and overshot it by a little, it may be very hard to distinguish between low cortisol fatigue and high cortisol fatigue.

As far as hunger goes, I really have not seen an increase in appetite, yet... Perhaps that takes a little bit longer to really show up? I was supposed to stay on 60mg for another 2 days, but I'm lowered down to 40mg today due to the side effects. Hopefully I will not have to see this side effect because I have enough as is...

Another interestingly thing is that my blood pressure has not moved at all. One of my hormone doctors always told me, that you cannot be over replaced on cortisol until your blood pressure goes up. Well I can say with 100% certainty that he is flat out wrong. There is no way I am NOT over-replaced on this dosage. You do not need to have high blood pressure to be over-replaced with cortisol. In the ER, my blood pressure while lying down was ~99/76. Standing up it did seem to be higher than usual (122/85), but I was a little nervous in the ER. My heart rates have been much worse as well. For ME, low cortisol or weak adrenals (whatever words you like to use) plays no role in my POTS. In fact, I think higher levels of cortisol actually make it MUCH worse. I've been reaching 160 heart rates like they are nothing. The shortness of breath has been very bad as well. At night my heart has been POUNDING like crazy. These are things I do not normally experience, so I have to contribute it to the steroids or complications of the steroids in some way.

My blood sugars are completely out of control at the moment. I have not had them checked since the ER visit, but a fasting BS of 287 is really bad. Normally I am fasting around 75, so this is directly from the steroids. If you are on say 40mg of HC and are experiencing higher than normal fasting or postprandial blood sugars, this may be YOUR clue to being on too much steroid. High cortisol symptoms can be quite subtle especially when you are only a tiny bit over-replaced.

The reason I ended up in the ER was likely from the steroid injection. I still have not quite figured out what happened, but I looked very dehydrated on my labs and the ER doctor thought my potassium levels were too low. Thankfully after getting the saline and taking more potassium pills, my muscles are no longer seizing up or cramping. This could be another clue for those who are constantly chasing arbitrary electrolyte numbers on labs. Maybe you are just taking too much steroid to begin with and are trying to compensate with ingesting large amounts of salt or potassium?

What I thought was "bronchitis" is actually acid reflux caused from the prednisone. Who would have believed after only 3 days, I am getting stomach irritation! I went to my PCP today and she said that I am experiencing heart burn from the pred and that I should consider lowering my dose down quicker. (Of course she said I had to run this by my endo). Honestly I can say I never experienced heart burn before and it is awful. When I take in a deep breath, I feel like my lungs are on fire, but my lungs are completely clear and I have no sinus issues either. This is just another one of those..."oh wow I had no idea that could even happen" symptoms. haha

Another interestingly thing I have noticed is my increased need to use the bathroom. I have been peeing so much throughout the day and also at night. Now the first day it was probably from the saline IV's, but I am still noticing an increased need to urinate and it is mostly clear as well. I used to have this symptom before the HC, so that tells me there is a fine balance between too little cortisol and too much cortisol.

After this entire experience on an immunosuppressive dose of cortisol, I think many people in the adrenal fatigue movement could be over-replaced on hydrocortisone. They feel symptoms they believe mean low cortisol and continue to raise their dose when in fact, their initial symptoms were actually high cortisol. This is why it is SO important to get good diagnostic testing done before ever taking HC. Remember that saliva cortisol results, ACTH, and random serum cortisol readings while on HC are meaningless. You cannot dose according to what those labs will say as they are directly affected by the last pill you took. Only timed daycurves can be used and those are normally done while in a hospital.

I am concerned that I may not be able to go back to my baseline and that scares me. How long will it take for the effects from this to go away? It's going to be at least another few days before I can get my dose down to 20mg of Prednisone. That's still 80mg equivalent of HC and my taper was not done appropriately by the urgent care physician. I will be talking to my hormone doctor to see what he thinks I should do. I cannot go from 20mg of Prednisone to 15mg of HC overnight. I will most likely go into crisis.

Hives Got REAL Bad, REAL Quick

2011-04-24T16:28:00.002-04:00

Hives from heavy metal chelation

Yesterday the hives got really bad. Like I thought my life was in jeopardy because I started to have trouble swallowing and speaking. I went to the urgent care and was given a mega dose of Decadron (Dexamethasone) and told to take high doses of Prednisone for the next 15 days. Part of me was really worried about all of this and the injection, but I had little to no choice. My throat was starting to swell up on me and I was scared to go to sleep like that. Benedryl, zyrtec and some other type of antihistamine had no affect on the hives and I was freaking out.

Hives from heavy metal chelation

I was given the equivalent of 600mg of HC in the Decadron IM injection! Needless to say my blood glucose levels are off-the-charts today.

So I woke up in the middle of the night, basically feel out of my mind drugged up from the Benedryl the doctor gave me, and realized my left arm was numb. Thinking that I had just slept on it weird, I turned over and went back to bed. Much to my dismay I woke up to a even more numb arm and it was spreading to my other arm and my left leg. Uh oh! Once the urgent care opened up (thank God they were open today), they told me to go to the ER. There was no reason for my limbs to be going numb.

For Easter I went to the ER and now I'm home with the same numb limbs. My muscles are seizing up and it is really uncomfortable. I was given 2 saline bags and a 20meq potassium pill, which I have hundreds of at my house. Oh well I wasn't about to reject it though. I was hoping all of that would help, but it has not.

More hives from heavy metal chelation

I really do not know what to do now. I cannot go to the ER or go on high doses of pred every time I come off chelation round. Clearly heavy metal poisoning is what is wrong with me. Heavy metals are causing a serious reaction in my body, but I need to be safe and figure out how to do this right. Do I lower my dose and take it for 10 day rounds? Do I stay on the same dose and just chelate longer? It does not matter if I take DMSA or DMPS, these unbearable hives happen so it is not specific to one type of chelator. And it is important to note it only happens after I stop taking the chelators. It is just so strange.

One thing I do know for sure is that the high doses of steroids are messing up my glucose and immune system. I cannot be taking this much every few weeks/months. Interestingly my liver enzymes are fine even though I was on the Diflucan.

Here are some of my labs from the ER. I asked for them and the doc handed me copies! <3 :)
Glucose 287 (70-99) Like ridiculously high
CO2 Content 19 (22-34) L
Anion Gap 15 (2-12) H
Lymphocytes # 0.5 (0.9-3.1) L
Monocyte # 0.08 (0.11-1.0) L
Neutrophil % 89.5 (43.6-74.5) H
Lymphocyte % 9.0 (15.5-44.5) L
Sed Rate 4 (<20) Normal

Hives Are Not Fungal or Yeast

2011-04-22T17:39:00.000-04:00

Now that I have been on the Diflucan and the hives have returned again (after stopping DMPS round), I think I can assume it is not from a fungal or yeast overgrowth. Right now they are not too bad, but we will see how the next few days go. I'm thinking longer rounds are the way to go for me since I have no symptoms while on round and the hives only start 2-3 days after I stop. Could it be metals resettling? I will never really know.

One weird thing I have noticed is in some areas of my body, my skin looks shiny. I have no idea what that is about. Maybe I'll try to take a picture, but I have a feeling it won't show up on my old camera.

Round 4: DMPS Complete

2011-04-21T12:18:00.000-04:00

Yesterday I finished up round 4 of DMPS and I feel good. No hives! haha Once I get some more money, I'll get another month's worth filled and just keep going.

My vision is definitely different right now. I think one of my contacts may now be too strong for me. It is odd as I am not seeing the same out of both eyes and at times I think it may be giving me a slight dull headache. I've been wearing my glasses more because I don't tend to notice it as much. My left eye is -5.25 and my right eye is -5.75. I'm thinking the left eye may be too strong and I'll have to dig around to see if I have an old contact somewhere that is -5.00. If I had extra money lying around, I'd go to the eye doctor. I am actually due for a new exam (just got the reminder card in the mail!), but since I don't have the extra money I will just keep wearing these contacts for now.

On my off days I make sure to replenish my nutrients and minerals. The one multi-vitamin that was not giving me heart palpitations has gluten in it. AHH! I cannot win, so I am trying to take individual minerals. Taking all of these pills can get quite annoying at times.

Rant About Hydrocortisone Use in Adrenal Fatigue Patients

2011-04-20T18:24:00.005-04:00

Hydrocortisone Use in Adrenal Fatigue: Is it really as good as "they" say?

Today I have decided to rant about using hydrocortisone in those with adrenal fatigue, CFS and any of those non-descriptive syndromes or illnesses.

I have finally had enough of the nonsense and need to speak my mind.

When I started this blog, I was very naive and had no idea what I was getting myself into. When I did research about adrenal fatigue, all of the websites made it seem so easy. Just take some "adrenal support" and you'll be bouncing back like new in no time. Yippee! I can tell you first hand, they were quite WRONG. Over the years I have realized that these websites paint a very happy, cheerful journey, but in reality it is a long painful journey. They may not willingly know, but they have started a very scary movement of people, telling most to skip going to endos and simply seek a natural doctor who is willing to prescribe HC. Some of them even suggest self-treatment, which is a whole other topic.

The testing recommended usually includes a 4x daily saliva cortisol and maybe a serum AM cortisol. Not many are testing ACTH and nearly NO ONE in the adrenal fatigue community are getting ACTH stimulation tests. Some argue since endos are bad, that it's ok to skip getting the ACTH stimulation tests. Yes some endos are idiots, but that does not mean you should avoid their testing. Especially when you are talking about going on a steroid, which could be for the rest of entire life. Once you have STIM test results those can be interpreted differently by a more open-minded doctor if the endo you see is a jerk.

If you have found my blog, it is important to understand that going on hydrocortisone is a big step. This is not something to take lightly and those who claim adrenal suppression does not occur on low doses are flat out wrong. They are simply repeating nonsense that has been made up out of thin air. One individual in particular seems to be "credited" with a lot of the adrenal fatigue information. He came up with theories that sounded pretty good and those ideas were repeated over and over again on forums, message boards and on yahoo groups. I used to believe him too, so I am guilty of being suckered in as well. Years ago he was asked where his information originated from, he would refuse to say or insisted it was in endo books that are no longer in print and do not exist. I find that hard to believe today especially because Google books has just about every book listed on there. If this information existed at one time, why was it not repeated in later editions of these so-called endo books? Endocrinology books do not simply disappear.

I tell everyone to question everything they read (even what I say), so all of this adrenal fatigue information is no different. Regardless of how much it "makes sense", you really need to find a legitimate source if you plan on following advice. Remember that a lot of the information on these sites is only from personal experience and if you follow it, you are doing it at your own risk. I'm kicking myself every day for not getting that stim test done.

Very very few people with adrenal fatigue just take some "adrenal support" and feel better. Usually on the forums people are messing with dosing for months, if not years. They have been made to believe if they aren't feeling 100% on hydrocortisone, then they must need thyroid meds, then sex hormones and some even go on growth hormone. So what used to be "adrenal fatigue" has now become hypothyroidism and hypogonadism. Great! If for some reason you ever need to see a mainstream doctor, they will question every thing you are taking and quite honestly for GOOD REASON. Did you have any tests that even show an adrenal problem?, a thyroid problem? or a sex hormone problem?

If none of those treatments above seem to work out for you, then you are in big big trouble. These are the only 3 body systems that the adrenal fatigue community believe in. They completely block out everything else unless of course it's ferritin, B12 or Vitamin D. Because you know those are the only 3 vitamins your body needs. (tongue in cheek here) This is why I have become quite frightened and pissed off at the entire natural adrenal movement. They get you on all of these medicines and then have no advice for you when it does not work...Remember YOU are on your own, no matter what a forum moderator or forum goer tells you. It is your body.

You are made to believe going on "adrenal support" is going to be your fix and then years later you are looking back, asking yourself what the hell happened?

All of the websites or groups based upon this particular person's information, use each other to verify the other is accurate. Some good meaning people (who are just repeating what has been said for years) will say that what everyone is doing is safe because of Jeffries' book. I have that book, but admit I have yet to read it from cover to cover, but most do not realize, Jeffries performed Stim tests on every single one of his patients. He was not using hydrocortisone like some people have assumed.

What Really Is Adrenal Fatigue?

The idea that adrenals get tired is complete and under bullcrap. If adrenals got fatigued then Cushing's Disease would not exist because the person's adrenals would simply stop putting out cortisol. There has to be another underlying issue here for your adrenals to become "fatigued". Those in the adrenal fatigue community most likely have HPA (hypothalamus-pituitary-adrenal) dysfunction. I'm beginning to believe there is an underlying cause for this and HPA dysfunction is merely another symptom of a larger problem.

Even though Hydrocortisone (HC) is considered the "treatment" for adrenal fatigue, are most ready for the responsibility?

Most people in the adrenal fatigue community have absolutely no idea the consequences of taking HC. You hear them say stuff like, "you take HC to support the adrenals", but that is not accurate at all. HC does not support the adrenals at all and no matter what dose you are on, eventually you are suppressing the adrenals. The question is not IF you are suppressing them, instead you have to wonder HOW MUCH you are suppressing them. Most people with adrenal fatigue have been given the impression (from these forums and websites), that taking HC is easy and there is nothing to worry about. Once again WRONG.

You must wear a medic alert bracelet for the entire time you are on hydrocortisone. In some cases this could be the rest of your life. You must have ICE (in case of emergency) papers in your purse and vehicle at all times. You must have an injection kit prescribed to you in times of emergency. By going on and staying on HC, you essentially make yourself adrenal insufficient, so you must stress dose for illnesses, travel and surgeries. Adrenal suppression does not happen right away, but eventually even after a relatively short course it has been seen. This study showed only after 12 weeks of HC, there is adrenal suppression. It was reversible at this stage, but how many of those visiting the adrenal fatigue forums are being warned about this? I can tell you from what I have seen over the past 3 years, NONE OF THEM. Most of the websites will say up to 40mg of HC does not suppress the adrenals and there is nothing to worry about doses below that amount. Clearly that study linked, proves otherwise. This is another study done on those with Rheumatoid Arthritis that showed pretty much the same thing.

Please do not confuse my rant against the use of HC in Adrenal Fatigue with those who have Addison's Disease, Congenital Adrenal Hyperplasia or LOCAH. These are completely different conditions that warrant HC treatment. NO questions about this at all! If you have a STIM test that show poor functioning adrenals (typically <20 response to a stim test), then you have no choice but to go on hydrocortisone for life. Hydrocortisone by itself is not a bad thing and it has helped many people become active and lead extraordinary lives (Dusty Hardman comes to mind here. I have her Addison's blog linked on the side bar).

I am just upset with the adrenal fatigue community that pushes HC like candy. There are many sick, desperate unsuspecting people on these forums and they do not know what they are getting themselves into. One woman on the adrenal yahoo group was mislead by a doctor and found herself on nearly 60mg of HC daily. She is now suffering from high blood sugars and is trying to wean down as fast as possible. I just hope she hasn't done permanent damage on those doses!

Even I am stuck on hydrocortisone now. Why? Because I was under the impression that it was NO BIG DEAL. You can wean off of it any time you want! etc etc. Well they were flat out wrong. It is a big deal and without a stim test I question my hydrocortisone use on a daily basis. The attempts of weaning down have been pathetic and I will likely try again in a few weeks to see what happens. If I had had a STIM test done, then I wouldn't be torturing myself. If I have true Addison's (which I think is possible), then I would not even think twice about it and just go on. But since I did not have that STIM test done, I will forever wonder what was truly going on.

Please if you have adrenal fatigue with low saliva cortisol results, do some further digging. Do not just sign up for HC because you want a quick fix. There is a very good chance it will only give slight improvements which may not be worth the risks of long term adrenal suppression. Many of the posters on these forums are still sick and a small group cannot lead normal functioning lives. I have found over the years, many of my "adrenal-like" symptoms have nothing to do with low cortisol at all. I suspect lots of people are trying to treatment symptoms like this with HC.

Here are some excellent links that everyone should read if you are considering going on HC for adrenal fatigue. Are you willing to take the risk?

http://www.medscape.org/viewarticle/734542_4
http://jcem.endojournals.org/cgi/content/full/jcem;91/3/793
http://www.bioscilibrary.com/resource/summerschool/2004/ss04/ss04_arl.htm

Round 4: DMPS Begins

2011-04-17T08:11:00.000-04:00

The hives are gone and I decided to start up on the DMPS again. This will be another 3 day round and then after this, I may take a slight break. I will be out of pills and will need to get the money together to order more.

I have had no improvements with the POTS, but my vision is definitely more clear. It is actually freaking me out a bit. In all of my years of life, my vision has never gotten better. Every 6 months I usually have to go back to the eye doctor and get a stronger prescription. About 2 months ago I started to notice my vision was losing its crispness and figured it was only a matter time until I would be heading in again.

Then one day out of no where I realized how amazing the trees and stones looked. I figured I was just going crazy or imaging things, but now it's been a few weeks and it has stayed. The glasses I use around the house are an old prescription. Before I could NOT drive with these on as road signs are blurry and I would not trust myself at all. Yesterday I tagged along to the post office was commenting over and over again how well I was seeing out of the glasses.

We will see if this continues. If my prescription has gone down, I will be speechless--as would my eye doctor.

Hives Have Calmed Down

2011-04-07T18:54:00.001-04:00

The hives are better. The skin is still discolored where they were, but I'm not feeling itchy. Thank goodness.

I'll probably start chelating again tomorrow. I just want to give it another day. I am still taking the Diflucan and will continue to do so. It will be interesting to see if the hives come back. Did the Benedryl or the Diflucan help? I won't really know unless the hives show up again.

Update: Later in the day I had some more hives show up around my neck. Still keeping an eye on this.

Diflucan: Will It Stop This?

2011-04-05T20:35:00.000-04:00

I woke up and immediately called my doctor and the message on his machine scared the hell out of me. It said he was going to be out of the office for a whole week. I nearly vomited when I heard this, but decided to leave a message any way. Thankfully I got a call from one of the receptionists/secretaries and she said she would contact the doctor and get back to me. I told her she was a lifesaver and was extremely thankful for this because the hives are getting to the point where I might have to see an urgent care soon for high dose predisone.

Hives on neck-Monday night

I got a call back a few hours later and my doctor agreed to have me try Diflucan. Since the hives are not responding to zyrtec, he thought it was a very good idea. I told her (the secretary) that this is my last attempt before I give in and go on prednisone. The hives are really getting that bad. This picture above is quite tame compared to the hives on my torso and lower abdomen, which you can see below.

So itchy!

As soon as I got word it was available at the pharmacy, we ran over there. I got the prescription and took my first one in the car. haha Now I wait and see what happens. I don't expect miracles because I may have already reached the point of no return. I don't want to go on high dose prednisone. I'm going to be out of my mind if I have to though and that scares me. I might need to buy a cage for my husband to lock me in...lol J/K!!! I really do not do well at all on large steroid doses...

Fingers crossed this works. I am not starting my round today obviously. I was due to start back up again, but I need to get these hives under control first.

And It Begins...Hives

2011-04-04T04:21:00.002-04:00

Tonight out of the blue, with no other symptoms or issues I started to get hives everywhere. I do not know what to do now. DMSA and DMPS now both are causing hives? Here's the weird thing though...I am not on round. I quit late Thursday night, so it has been 3 days.

Terrible Itchy Hives on Neck and Scalp

Very large, hard hives near elbow

The hives were out of hand, so I took a zyrtec. I got some nice picture of the hives, so all of you can see what I go through now. I've got no idea what to do. The only things you can use to chelate cause me severe distress. I still find it odd that it took 3 rounds for it to show up.

Well I have to let this all soak in and see what I want to do from here. To say I am frustrated is a huge understatement.

Update: I woke up Monday morning and the hives are still here. Wow! I'm thinking this must be a candida/fungus flare up or some type. I also have tinea versicolor on my neck now and it is starting on my chest. You can see a spot of it (if you know what you are looking for) in the picture of my neck. I'm not sure what to do, but studies I've read suggest taking Diflucan to control the fungus. We will see what I want to do because I did not really want to do that right now. Blah...never dull when chelating!

Update 2: It is now Monday night I see no end with these hives. Zyrtec surprisingly isn't working. I don't know whether it is because my Zyrtec is 1 year past expiration (haha) or if these hives are just not responding. Ugh I really did not want to go on an anti-fungal, but I might have to give it a shot to see if it clears up.

Round 3: DMPS Complete

2011-04-01T21:18:00.000-04:00

I am happy to say round 3 of DMPS is complete and I don't feel any symptoms still. As a reminder, I am taking 50mg of DMPS every 8 hours for 3 days. I don't know if I should be happy, worried or content. haha Is it doing anything? I should I be feeling something to know it is working?

I am not the type of person who has placebo effects...Today I felt like my vision was more clear like I got a new contact prescription. It was not particularly bright or sunny, so I don't think it had anything to do with lighting. We'll see in the next few days if this sticks around of if I am just imagining things. :) As we were driving around, I could see every twig and stick on trees. The rocks on the ground were more defined and it was just amazing overall. The floaters are still there, but the actual vision felt like it was better than 20/20. It was incredible.

That is all for now. I'm still working on getting my thoughts together for Part 2 of the Lyme discussion.

Lyme Disease Part 1: Another Scapegoat?

2011-03-31T01:19:00.001-04:00

Today there are a number of doctors who feel the testing available for Lyme disease is flawed. These doctors are called LLMD's, which stands for Lyme Literate Medical Doctors. Many believe that even when standard Lyme lab tests come back negative, that does not rule out the possibility of having Lyme Disease. There are websites that go into the science and exact reasons why this is the case, but honestly it is over my head. I'm not even going to try to explain all of that. If you want to read a more in depth discussion I recommend visiting this page.

Credit: SteveFE

My problem-because of the inaccuracy of Lyme testing-is these doctors begin to assume everyone has Lyme disease whether or not they have any testing that shows it. These doctors function on clinical diagnosis especially in cases of Chronic Lyme disease. My opinion is chronic lyme disease and acute lyme disease are two separate things entirely... I understand why these doctors feel the need to diagnose someone with Lyme because it gives a patient a label to tell their family and friends. "Oh I have Lyme Disease". It's much easier to say instead of a long list of symptoms. However have we now gone to the other end of the spectrum, with many diagnosed with Lyme Disease who do not have it? Those who I come into contact with online that have been diagnosed with Lyme Disease seem to have a long list of symptoms or medical issues. They seem to do very poorly on hormone replacement and often times just never get better no matter what they do.

How does one know Lyme disease is the cause of all these symptoms and in the long term is it safe to simply blame Lyme disease?

There does seem to be a connection between Chronic Lyme Disease and heavy metal poisoning, but that does not make sense if you think about it for a second. How does a tick bite give you metal poisoning? Well the short answer is, it doesn't. My theory is perhaps Lyme disease is a symptom of the overall dysfunction of the immune system. Perhaps mercury first disrupts the immune system and the body cannot get rid of the Lyme infection. Once the immune dysfunction starts to worsen, co-infections begin to rear its head and you see people with babesiosis, erlichiosis, bartonella and a long list of other hidden infections like CMV and EBV which are much more common.

Chronic Lyme Disease is becoming the new Chronic Fatigue Syndrome, candida or fungal infections, Postural orthostatic tachycardia syndrome (POTS), Epstein Barr Virus, Fibromyalgia or any other viruses or syndromes, in the natural health community. It is important to keep in mind that all of these are simply a symptom of a larger issue and not the CAUSE of the health problems in most cases. Treating the symptoms of these will not cure you of the underlying issue at hand and even though you may feel a little better at first, the dysregulation will find a way to show up in new areas. I believe this is why when we fix our bodies in one way, it seems like we turn around and more symptoms begin to appear in other aspects.

I am afraid that Chronic Lyme Disease is becoming the new scapegoat for health issues. While Acute Lyme Disease is real, I am more concerned about those who go to a doctor and are diagnosed based solely on symptoms. The treatment is usually long-term, hardcore antibiotics which could have side effects of their own! We have a real problem today because more and more people are becoming chronically ill with no hope of recovery. No one knows what is happening and doctors simply do not want to take the time to figure it out. How can these LLMD be certain that the symptoms suggested on Lyme websites are truly Lyme disease symptoms?

Anyone could walk into a LLMD office and get diagnosed with Lyme Disease. I think it's practically guaranteed... I had an appointment with a well-known LLMD and I decided against it because I knew I would be placed on antibiotics. I decided it's better to first deal with the mercury and then go back if this does not work out for me. That's what I intend to do unless something extraordinary occurs.

Update April 3 2011: Here's an example of someone (who I've actually followed on another forum), who was told he had Lyme all these years and guess what? Now all of the testing shows he does not. He's wasted years of treatments and time to get better. The reason why I've followed this person is because he has POTS too. Unfortunately he is on the FDC yahoo group and will likely get suckered into that nonsensical bull. Do I reach out? I find most people don't want to be helped...

Part 2 in this series will talk about why I think I could have Lyme Disease and it did not come from a tick bite...

Getting Through the Heat Intolerance

2011-03-28T18:01:00.002-04:00

Heat intolerance can make summer miserable.

As it starts to warm up I have been becoming increasingly concerned with how I will make it through yet another spring and summer. We do not have central air conditioning in our house, so it can be quite unbearable at times. Where I live it is not uncommon to see 90 degree days with very high humidity, so fans just do not cut it. We put in window air conditioners, but they only do so much. It is not quite like having an entire house with air conditioning.

With severe heat intolerance, I am constantly in the beginning stages of heat exhaustion. With POTS this is just something you have to deal with I guess. Not many people have been successful in treating their heat intolerance. I am hoping chelation will help me, but I do not expect to see any results for at least 6 months to a year. If I were doing IV's then I would likely see improvements much quicker, but for now I am sticking with oral DMPS. I am still a little nervous about IVs and I don't know of any doctor who does them in this area.

The beginning symptoms of heat intolerance are all too common for the POTS patient. Here's a list of symptoms from the website medicinenet.com. It is linked above if you want to read more:

* heavy sweating (not the case for a lot of POTsy-we do not sweat enough)
* paleness
* muscle cramps
* tiredness
* weakness
* dizziness
* headache
* nausea or vomiting
* fainting

The skin may be cool and moist. The victim's pulse rate will be fast and weak, and breathing will be fast and shallow.

At some time or another I've had all of these symptoms while bathing or simply sitting in my house doing nothing. I do not sweat enough when I am hot. I think that might be part of the issue. However I do sweat profusely if I am having a norepinephrine response to stress of some type or become extremely tachycardic upon standing. Apparently these are controlled by two different parts of the CNS, so that actually make sense.

I guess walking around in my bikini, keeping cold wash clothes on my head and getting cold baths is really all I can do. The summer time is hell for me and I can not looking forward to it at all.

For those of you who got to the end of this article and think all of my symptoms sound "adrenal", think again. I am so sick and tired of hearing about how I need adrenal support. I am on adrenal "support" and it does nothing for POTS, nor heat intolerance, nor exercise intolerance, not the lightheadedness etc. Sorry but I am just sick and tired of hearing this. STTM and the adrenal yahoo group have both polluted all health forums, so everyone considers themselves experts on adrenals. No you are not! Wake up, there are other body systems out there other than adrenals and hydrocortisone is not something you should be messing with unless you have real adrenal failure. Period.

I made the mistake and listened to all of these armchair forum doctors for years. No more! /Rant off

Finished Round 2 DMPS

2011-03-25T23:10:00.000-04:00

I finished round two of DMPS and I feel nothing. I'm not getting any symptoms at all while chelating with this and it's great. It's so good that I'm wondering if it is doing anything! haha That's pretty much it for now. We have a cold spell right now, but last week it was warmer and I could tell the shortness of breath is making a return. Ugh...I hate POTS!

Round 2: DMPS and Humaworm

2011-03-22T12:49:00.000-04:00

I started my second round of DMPS today, so I hope everything goes well. A few days ago I also started taking Humaworm. This is a parasite cleanse and over the past few years I heard a lot of good things about it, so my husband decided we would both give it a try. I don't feel anything from it yet, so who knows?! You take 2 pills in the morning and 2 pills at night.

That's really about it for now.

Keratosis Pilaris

2011-03-19T14:56:00.002-04:00

I have suffered from keratosis pilaris (KP) for as long as I can remember. For those who do not know what KP is, helpforkp.com states:

While KP resembles goosebumps, it is characterized by the appearance of small, rough bumps on the skin. Primarily, it appears on the back and outer sides of the upper arms, but can also occur on thighs and buttocks or any body part except palms or soles. (Often confused with acne.)

Pubmed says that KP does not worsen over time, but for me that is not true at all. ~~No one in my family has this as far as I am aware of~~ I found out my sister has it too... and most sites suggest it is genetic follicular disorder.

When I was a young kid (5), I used to get so upset because my knees were covered in bumps. I would find a needle in my house (without my mom's permission of course LOL) and pick at them. Inside I found a hard white substance and a small hair all wound up. Even though it bothered me, no one could really see the bumps unless they got really close. At age 5 no one was getting that close to me! haha Looking back, I did not know how good I had it.

Around 6th grade when I started to shave my legs, my legs went from being pretty smooth looking, to atrocious in a few weeks. As soon as I started to shave, all of those hair follicles began to plug up, turn red and eventually get infected if I didn't dig out the hair. I had a huge problem with ingrown hairs on my legs and could not figure out what was wrong. Some of my friends thought it was razor burn, but I knew that was not it at all. KP is not razor burn.

For years I avoided wearing shorts because of how awful my legs looked. I hated wearing a bathing suit because they were all bumpy and nasty. Shaving the bikini area is not fun for someone with KP... As I got older and began dating people, I was soooooooo self-conscious of my legs. It was downright embarrassing because it looked like I had chicken pox or some other type of rash. To this day, I don't know how anyone could find my legs attractive...

Eventually I started to look into it more and thankfully my husband found the answer. (He is so much better using Google than me). Sure enough he sent me a website that talks about keratosis pilaris and that was when I finally had the answer to my troubles. All those years it was KP causing the nasty ingrown hairs, bumps and reddness on my legs. If you do not have KP, be very thankful. I told my husband, I'd spend a million dollars to get rid of this...lol That might seem completely insane to those of you who do not have it, but for those of us who do, it seems quite logical.

KP effects your self-esteem on so many levels. You buy a nice sexy black dress and if you dare wear it without stockings of some sort, your bumpy legs will be the talk of the evening rather than your outfit. Wearing shorts is only for extreme weather conditions, otherwise it is too embarrassing to be seen in public with the bumps. Over the years, it has gotten much much worse. I gawk over ladies who have nice, smooth legs. I will never have that, ever.

Now it is not only on my legs, but the back of my arms, buttocks and anywhere else where I attempt to wax or shave hair. As soon as I do this, the KP bumps, ingrown hairs and reddness begins. Once a patch starts to do this, it will NEVER again be normal.

I have included in this post a few pictures of the back of my arm. I want to figure out how to get rid of this crap. Not many people have been successful within the KP community. All of the things I have tried never worked very well...

Exfoliating and every day shaving seems to be the most helpful. I have to scrap out the outer layers of my skin. It is like my body is unable to shed skin properly so it begins to build up on the outside. It is truly odd.

Let me know if any of you have KP too. We can moan and bitch and complain about it together. haha!

Almost Completed First DMPS Round

2011-03-17T20:45:00.002-04:00

I am 2 pills away from finishing my first DMPS chelation round and I feel nothing at all. No headaches, no tiredness, no hives...nothing. This is very exciting to me because I was concerned it would be really terrible. With all of the negativity surrounding DMPS, I really thought it was going to be "tough" with a lot of symptoms and weird side effects. Perhaps it is too soon? I guess only time will tell!

I am following my doctor's advice on this one and will take a 4 day break. There is no reason to overdo it and if I continue to do well, I will look into increasing my dosage or increasing the length of rounds.

The fact I had no hives is pretty amazing. I just hope I'm not jinxing myself. haha

Recap: This was a 3 day round taking 50mg DMPS orally every 8 hours. I started half-way through Tuesday, so I will be ending on Friday morning after taking my 9th dose.

Took My First DMPS Dose!

2011-03-15T14:55:00.000-04:00

After some confusion on Fedex's part, I finally have my DMPS and I took my first dose of 50mg orally. I'm not sure what to expect and hope that I do not feel terrible or get severe rashes from it. Many people will tell you how terrible DMPS is, how it is toxic and going to kill me because it is not FDA approved. They link the DMPS backfire website and say not to take it. (You need to do your own research on this and need to know I've only come to this decision after long term use of DMSA with no help).

A few of the reports I read on that website were mostly just doctors doing the stupidest things or it seems like a lot of these people had underlying conditions that were not being taken care of in the first place. One story the woman started vomiting (which is pretty bad) yet she admits in her report that she has had these 'attacks' at other times in her life before the DMPS, yet she says it was all caused by the DMPS injection. This makes no sense to me at all. If it was DMPS, then why did you have episodes of this during other periods of your life? This should make this woman want to figure out WHY she is vomiting rather than blame it on the chelator.

Some of the reports show they were doing DMPS IV's with amalgams still in! Stupid. Or they were doing multiple IV's a week and/or not supplementing with vitamins at all. All of this is stupid stupid stupid. Those who favor DMSA are typically websites who are selling it too. Since DMSA can be purchased over the counter, these websites will of course tell you how bad DMPS is when they cannot prescribe it to you. They want you to buy it from their website and will say whatever you want to hear.

Also comparing DMSA to DMPS is very different especially since DMSA is not given by IV, ever. If DMSA was given by IV, then I suspect all of the same symptoms and side effects would be associated with it too. Especially with people doing stupid things with it.

If you are a returning visitor to my blog, you know how little I care about "FDA approval". I'm in this situation because of the FDA and their approval for using amalgams in humans.

Why am I trying DMPS? Because DMSA is not working. I haven't been able to find any frequent doser who has RECOVERED with DMSA. One person on the frequent dose chelation yahoo group has been chelating for 6 1/2 years with little to no improvement. Uh it's not working and this is my cue to start looking elsewhere. I don't want to be here 6 years later no better than when I started. I've already wasted 3 years of my life.

DMPS is much better at pulling mercury out of the body and that's exactly what I want to do. Dr. Cutler himself says it is better for most people because it does not disturb digestion or yeast issues and will not lower your neutrophils. I don't have issues with my digestion, but my neutrophils are always lowered when taking DMSA. DMSA gives me unbearable hives/rashes and I am curious to see if DMPS does the same. If it does NOT then I know the hives are from DMSA itself rather than it moving metals around.

After ~17 rounds of DMSA I am not feeling ANY improvements. All of the improvements I have had since starting chelation can be attributed to other things I have done with my health such as taking hydrocortisone, florinef and drastically cleaning up my diet. The frequent dose chelation folks would just tell me to "keep at it" and all of this nonsensical bullshit. No, I should have been feeling SOMETHING at this point.

I am following the "frequent dose" schedule for this, but with DMPS you take it every 8 hours which will be very nice at night! I'm doing 3 day rounds and I have enough pills with this bottle for 4 rounds worth. If things continue to go well, then I'll get the refills. The doctor gave me 5 refills!

Japan Nuclear Issues : Taking Iodine?

2011-03-14T16:42:00.001-04:00

I am worried about this nuclear plant issue in Japan. There are at least 3 reactors that are facing meltdown. This is very scary not only for those in Japan, but for the entire world. This could have catastrophic implications for the entire world depending upon how bad this gets. If I were in Japan, I'd get the hell out of there and get as far away from these nuclear plants as possible. Much further away than the 12 miles.... US Navy ships have detected high levels of radiation and have moved the ships further away. The catch is these ships were over 100 miles northeast of the plants! There are reports that the radiation from Japan will be reaching the US.

As you can probably tell I have been studying this pretty much non-stop since the earthquake hit. Ever since my bad bad reaction to taking iodine in 2008, I have been completely against any form of supplemental iodine. I warn people to do it as their own risk. You do not know how your body will react to it!

You have alternative news medias telling people to take iodine to protect the thyroid against the radioactive iodine. In a perfect body this makes sense and may be very helpful. Most of those people on these sites or alternative news media consider taking iodine completely harmless. I can attest that it is not completely harmless. It will cause your thyroid to create more thyroid hormone. In my case, A LOT more hormone. Those people already with an autoimmune thyroid condition but undiagnosed could send themselves into a thyroid storm...If that happens, you better get yourself to the hospital immediately.

The amount of iodine in the potassium iodate supplements intended for nuclear fallout accidents is VERY high. I found my supply of 200 capsules of KI03. 1 tablet is 85mg (35mg iodide, 50mg elemental iodine). The dosage is 2 tablets a day for an adult. That's ~~160~~ 170mg of iodine...HOLY COW! I have never taken that much iodine, ever. When my hair fell out, I was only taking 1-2 Iodoral tabs a day. 1 Iodoral tab has 7.5 mg iodide / 5 mg of iodine. Huge difference there. Even at these low doses, I felt completely OUT OF MY MIND as if I had drank about 10 espressos one after another. Some people will say it's a bromide detox or some other bull, but I think it was simply the increase in T4 hormone production, which was then converted into the active thyroid hormone T3.

Even though I vowed to never take iodine again, if this situation in Japan escalates and it is found the radiation has traveled to the US, even I might take some potassium iodide. I cannot believe I just typed that...I am concerned it may trigger an autoimmune response in the body though like it did before in 2008. Then what am I supposed to do. I am very worried about all of this. However, I suppose an autoimmune disease from iodine is better than having radioactive iodine in my thyroid. The lesser of two evils is not very helpful in this situation. Either way I'm going to suffer greatly.

As it stands now my thyroid works pretty damn well, so I do not need to add any other health issues.

Current Events: Japan's Reports Aren't Adding Up

2011-03-12T14:32:00.002-05:00

Since I have chronic health problems no one seems to understand, I take stories like those coming out of Japan very seriously. Environmental toxins are something we as a society need to be more concerned about and take more appropriate precautions. The funny thing is, is I'm not a tree hugger whatsoever. However, we allow companies and industries to pollute and destroy our environment, yet blame the little guy (you and I) for causing all of the pollution. We are the ones to be taxed and punished while companies get a free ride to do whatever they please. /sigh

I assume by now everyone is aware Japan is having issues cooling their nuclear reactors. I've been following this story practically all of yesterday and now throughout today.

What we've been told does not add up. Of course governments are known to minimize risk or even lie to its citizens. Some people will tell you this is to keep hysteria to a minimum but I think in most cases its to just hide their incompetence or just hide information in general.

From what I've gathered in the news (I do not own a TV so all of my reports are from online sources), is that the reactors shut down as expected when the earthquakes hit. However even after the reactors are shut down, they need to be cooled for a period of time until all of the heat is removed. This is what failed to occur because back up generators did not work properly. The news says that these generators were damaged due to the water from the Tsunami.

Things have escalated since last night. There was an explosion at the No. 1 Nuclear power plant early this morning. I woke up to see that headline and my heart just sank. Now I know absolutely NOTHING about nuclear power and how these things work, but this cannot be promising. Officials keep saying that any amounts of radiation which have been vented or released into the atmosphere are not harmful. Yet they have now increased the mandatory evacuations from 10 to 20km (12.5 miles) and they are not allowing anyone within 60km (~37 miles) into the region. Common sense tells you that this does not make any sense...

In addition to those reports, International Atomic Energy Agency (IAEA) are considering handing out iodine to residents in the area of the nuclear plant. They are also warned not to turn on air conditioners nor drink tap water according to this report.

There are now three workers who have been exposed to high levels of radiation, but did not need decontamination treatment.

Lastly, reports claim that there has been no meltdown, yet radioactive cesium and iodine was detected near the plant. This report from Kyodo News, says that they have had to admit there was some meltdown, yet those headlines are not being carried. In fact the denial is still happening (at least online). Perhaps the TV reports are caught up by now.

While all of this is happening, we are being told at the same time everything is safe. ...Yeah right.

Update 3:05PM - People are now being scanned for radiation at evacuation centers. Another report here, which ironically also says a nuclear catastrophe has been averted.

So obviously something fishy is going on here and for the greater good of the residents in Japan and the world, we need the truth. "They" say there has been no damage to the steel container, but how can you honestly believe them at this point...For hours they were saying no radiation was released yet there has been detection of radioactive cesium and iodine.

Updated 3:10- The Nuclear and Industrial Safety Agency board is saying the only way the explosion occured at the plant is by meltdown of the reactor core.

And people wonder why I am so critical of the government, doctors and mainstream medicine? They just say whatever is convenient at the time and whatever collateral damage that occurs means nothing to them. If you are one of the ones who gets sick...well screw you. They will ignore you and turn their back on you.

I pray this turns out OK, but I don't have a good feeling about it.

Ride My Bike Every Day

2011-03-10T08:20:00.000-05:00

I want to get more active and try to feel a little better about myself, but I have to be realistic. With POTS or any chronic health problems, self-esteem and self-confidence goes out the window. How can you be happy with yourself when you cannot do anything normal with your life?

I have decided for the rest of the month of March, I will ride my recumbent bike for at least 5 minutes a day. I know this sounds truly pathetic. I am 26 and can only do 5 minutes of bike riding? WHAT? I CAN do more, but I have to keep this time very low so I do not injure myself or overdo it. I used to ride my bike for MILES and MILES on a daily basis when I was in my early teenage years. I was known in the neighborhood as "the girl who always rides her bike". When my family would vacation at Pymatuning State Park, I'd bike ride at least 10-15 miles a day easily and I loved every moment of it. Even back then though I was suffering from POTS, however it seemed more easily controlled. Having the wind in my face while riding always helped to keep me cool.

5 minutes should be doable... Just have to keep motivated.

Heading Back to Oral Surgeon

2011-03-08T10:41:00.002-05:00

Update: The pathology did not come back yet, but everything looks good. The visit took all of 3 minutes.
Update 2: Pathology came back and all is well. It was definitely an amalgam tattoo. Nothing was noted other than this on the report. I'm glad it is over with now and it is finally starting to heal really well too.

In about an hour I'll be heading back to the oral surgeon to make sure everything is OK. Recap: I had an amalgam tattoo removed last Tuesday that had been in my mouth for almost 20 years. It was about time to get it out and I do believe mercury leeches from these damn things.

Ever since the removal of the amalgam tattoo I have not been feeling quite right. I don't want to immediately jump to the conclusion it is mercury, but it certainly makes me wonder. The weird panicky feelings I was having last year started to come back yesterday which was just strange. I had been doing really well and then I don't know what triggered my brain to start thinking obsessively. Very peculiar.

I have been having these weird dull headaches. The best I can describe it is almost like a burning. Have you ever accidentally snorted some pool water and your sinuses hurt and burn for hours? That is exactly what my headache felt like. Perhaps I just picked up a mild sinus infection or something. Quite weird though!

Hopefully they will have gotten the pathology back and they will let me know what they found in the tissues. I will ask nicely for a copy of the report and then will post what it said.

I got the DMPS prescribed to me (after a little sweet talking) and it is being compounded by College Pharmacy. I really like this pharmacy as I never had any problems with them and anytime I had questions for the pharmacists they were more than helpful. This is the same place where I got my Methyl B12 injections.

The DPMS is more costly than DMSA. It is about $2.75 per 50mg/capsule. I guess it could be worse. Years ago DMPS was running about $5 a capsule. I'm going to be taking the DMPS 3 x a day for 3 days. Then have 4 off days. If everything goes well I may ask the doctor to up the amount of chelation days.

*Fingers crossed*

NutrEval Doctor Commentary

2011-03-05T11:46:00.002-05:00

Warning: Long technical post

I was too tired last night to get this posted, but yesterday I got the commentary provided by Genova Diagnostics to the results of my NutrEval test. There are some interesting things listed and I feel I did a very good job interpreting my own results. Genova will only give information on things that are either elevated or below range, so even if you are 1 or 2 points away from being out of range, nothing is provided. The commentary results are not provided to the patient, so this is why it took so long to get them (as I had to get the doctor's office to copy them).

This commentary confirms I definitely have some type of mitochondrial dysfunction especially when it comes to utilizing B vitamins. The commentary is way too long to post on here (about 12 pages), so I will quote specific parts I feel are important.

For those of you who don't know what I am talking about, you can read the post about my NutrEval results. The NutrEval is a comprehensive test by Genova Diagnostics which looks at urine amino acids, branched chain amino acids, organic acids and fatty acids. This test only cost me $150 when submitted through my insurance through the "PayAssured" program. I believe it costs more now though. It must be ordered by a doctor who has an account with Genova Diagnostics. Getting the blood drawn is a pain in the butt because the lab must be willing to prepare the vials immediately. You can't just go into Labcorp or Quest Diagnostics and have this done.

Do I recommend this test? Yes and no. If you are not the type of person willing to research the hell out of your results, then it will be of no use to you. No doctor understands how to interpret them and you will be on your own. Upon typing NutrEval into google, I find my own forum posts asking for help and the few forum posts that are not my own, are others looking for interpretation advice with little to no luck. This test can be quite helpful if you put in the time to understand the results though. It gives you a nice peek into what your body is actually doing on a cellular level. But if you cannot even understand basic blood work results, then I do not recommend it. I don't want to sound rude, but basic blood tests are Kindergarten level compared to the results you will receive from the NutrEval.

There is a good handbook from Metametrix that is quite useful when interpreting the results. You can find the book on their own website at this link.

Areas of Interest

Alpha-ketoglutaric Acid (Alpha-ketoglutarate or AKG)- 36.5 (0.5-16) High

There was a lack of information online about what it meant to have elevated AKG. I could find information if it was low, but elevated levels seemed to be very rare. What I found was that there was a good probability the dehydrogenase complex was not working properly. Something is inhibiting it from converting AKG to the next metabolite which is succinic acid. The commentary confirms my suspicions.

Elevated AKG can be due to specific weakness in the alpha-ketoglutaric acid dehydrogenase complex that converts AKG to downstream citric acid cycle metabolite, succinic acid.

It goes on to say that this requires B1, B2, and B3 in specific forms (which you cannot buy or supplement with directly) and also lipoic acid. Elevated levels can also exist due to a weakness in decarboxylation of glyoxylate and alpha-ketoglutarate which can cause kidney stone formation. This would need to be further investigated by testing urine levels of oxalate and glyoxylate, but it is not very common.

Decreased activity of this complex is seen in Alzheimer's Disease so that is interesting.

Formininoglutamic Acid (FIGLu)- 19.5 (<12.1) High

There was quite a bit of information about this one online. I learned I was probably deficient in B9 and started to take even more Folate. My attempt at taking Folinic Acid resulted in continuous heart palpitations which became so severe I thought I would need to go to the ER. I sought help from a local urgent care, but you can read the hilarious story from the visit in this post here. The Sinus Arrhythmia became so pronounced it would cause heart palpitations upon exhale.

The commentary on this one talks a lot about the THF form of Folic acid and B12. Histidine supplementation can raise this in the urine, but I was not taking that at the time of the test. It says to investigate Uric acid, succinylpurines, inosine and adenosine if levels of FIGLu continue to be elevated after supplementation of folate, B12, B6 and lipoic acid. Nothing too groundbreaking in this one in my opinion.

Methylmalonic Acid (MMA)- 25.9 (<19) High

Once again there was a lot of information about this one online. I learned this meant I was B12 deficient, which would have made sense if I hadn't been giving myself daily injections for months prior to the NutrEval test. When I saw this I started to look at alternative reasons why this could be elevated despite high dose B12 supplementation.

The commentary had an alternative reason why this could be elevated.

Less common causes of elevated MMA include deficiency or dysfunction of the apoenzyme, methylmalonyl-CoA Mutase or deficiency of the coenzyme, deoxyadenosylcobalamin, needed for cobalamin synthesis. In such cases, megadoses of B12 as hydroxycobalamin are appropriate...

Interestingly supposedly my great grandparents had pernicious anemia, but testing back then was probably not even close to what it is like now. How would they really know if it was pernicious anemia or a deficiency in a coenzyme? I have been tested for PA and I do not have it, thankfully.

Even this alternative reason doesn't seem to work because it says to take 1000-2000mcg of hydro B12 for a few days and then do megadoses orally. Well I think taking daily injections of MethylB12 for months surpasses this recommendation.

Beta-aminoisobutyric acid (B-AIB)- 354 (22-192) High

There was a lack of information about this one. One thing I did find was that in some cancers this becomes elevated and they use it as a way to determine prognosis. Well considering I do not believe I have cancer, this was not a concern but it did not help to explain why it was high either.

The commentary provided by Genova was especially enlightening and I think it explains some of the other elevations on my test.

B-AIB is a product of catabolism of pyrimidine nucleotides and it is an intermediate of valine-to-succinic acid metabolism. In valine-to-succinic acid metabolism, B-AIB is directly formed from methylmalonic acid semialdehyde.

It gives 4 reasons why this would be high.

1. Vitamin B12 coenzyme function (as adenosylcobalamin) is weak. Elevated methylmalonic acid in urine (methylmalonic aciduria) would confirm this. Vitamin B12 deficiency or adenosylcobalamin coenzyme defect would be causative.

Bingo! I think this is exactly what is going on with my body. I cannot make the active form of B12 which is why MMA, FIGLu and B-AIB is elevated. This would also explain why I need a lot of B12 to feel the effects from it. If my body cannot make the adeno form of B12 at an appropriate rate, it would only make sense that I need more of it to get past the enzyme issue.

2. Vitamin B6 coenzyme function (as pyridoxal phosphate) is weak. B-AIB also transaminates to its keto analog.

This is another good possibility too. This would explain other elevations in the test too, which is quite amazing to me. My test does make sense after all. More on this one in the Leucine and Isoleucine section.

3. The specific B-AIB to pyruvic acid transaminase is weak or absent. This is considered a benign variant of metabolism and is present in about 25% of Chinese and Japanese individuals and in about 8% of Scandinavian and Northwestern Europeans.

This is not me at all, so I don't think that's the cause. I'm strictly German/Austrian as far as I know!

4. Accelerated catabolism of DNA and RNA is occurring. Catabolism of damaged or diseased tissue, tumors and malignancy feature increased formation and excretion of B-AIB.

Even though I do not believe I have tumors or any cancers, I could see my body having to repair a lot of damaged tissues with the increased heart rates. This is something I will certainly keep in the back of my mind.

Taurine- 957 (68-538) High

This one is sort of tricky. There is not a whole bunch online about it because it is mostly to do with supplementing with it rather than talking about actual test results.

According to Genova's commentary there are a ton of possible explanations for an elevated Taurine level in your urine. You can be wasting Taurine so you are actually deficient or you can in fact be high in Taurine. Take your pick I guess.

I believe in my case this is likely what is occurring with me.

In molybdenum deficiency or sulfite oxidase impairment, elevated urine taurine results as a mode of sulfur excretion. Renal wasting of Taurine can be medically significant if it affects one or more of taurine's many important functions.

Then it goes on and lists all of the functions for Taurine, but were too long to list here. I think molybdenum is helpful so I will continue to take it.

Tryptophan- 112 (28-111) High

The commentary says that Hartnup Syndrome is not present because other elevations are not present. I have no idea what that is but I'm glad. haha

It says I am likely wasting tryptophan and have low blood tryptophan and low serotonin. Symptoms consistent with tryptophan deficiency are mainly those of serotonin insufficiency which may include: insomnia, anxiety, enhanced response to external stimuli (light, sound) and abnormal food cravings.

This is definitely interesting and I will keep this in mind too!

Leucine- 100 (30-87) & Isoleucine- 77 (24-58) High

In my search online having any branch chain amino acids elevated was usually serious. This is definitely not normal and I have not found another person's NutrEval who showed these as being elevated. There is a very rare condition which causes all three BCAA to be elevated, but since only 2 of 3 were for me, I know that this is not the cause. Thank goodness!

The commentary for this has been extremely helpful and I really wish I had got a copy of this sooner. It all makes sense to me now.

...This could indicate a weakness of transminase enzymes, limited quantities of alpha-ketoglutaric acid (AKG), or increased need for vitamin B6 as coenzyme pyridoxal phophate.

The light bulb went off in my head after reading this. Since my AKG is definitely NOT low by any means, then it has to be the coenzyme pyridoxal phosphate. If you recall from the beta-aminoisobutyric section, increases in that can be caused by:

2. Vitamin B6 coenzyme function (as pyridoxal phosphate) is weak. B-AIB also transaminates to its keto analog.

This is where the dots are beginning to connect and make sense. The Isoleucine and Leucine elevations are likely caused by the same issue causing elevations in the B-AIB, MMA and FIGLu.

The problem with all of this is that I cannot take the pyridoxal phosphate form (P5P) without suffering from heart palpitations. Is it worth another shot? I will have to do a little more research on this and see!

Clearly I have some sort of mitochondrial dysfunction when it comes to utilizing B vitamins

Glutamic Acid- 56 (5-21) High

There were several reasons given for an elevation in this, but most of them did not apply to me. I do not eat MSG so I know that was not the reason!

It says this can occur with impairment of purine metabolism. I have no idea how you would know if this was your issue. Another suggested cause is metabolic acidosis, which I suppose could be a possibility.

In metabolic or renal acidosis, glutaminase in the kidneys forms glutamic acid and ammonia which becomes basic ammonium hydroxide. This is a normal pH balancing mechanism for compensating acidosis.

Sarcosine (N-methylglycine) 58 (<48) High

This elevation goes back to the issues with B vitamins. When Sarcosine is elevated it is recommended to supplement with folic acid. Well considering I was taking a large dose of Folate prior to this test, there must be something else at play here. I haven't completely been able to get the larger picture on this one, but I'm sure someone who is more knowledgeable about this could.

Deficiencies of the cofactors associated with sarcosine catabolism. These are folic acid as THF and Vitamin B2, riboflavin, bound to the sarcosine dehydrogenase enzyme as FAD. The methyl group fragment removed from sarcosine is at the oxidative level of CHO and can form formaldehyde if THF is insufficient.

Mainstream medicine says that having elevated Sarcosine is benign and basically warrants no further evaluation (except to supplement with folic acid).

I know this was very long, but I wanted to go through everything. I may try to take some P5P and see what happens to me. My doctor was going to give me another refill for B12 but maybe I'll get the adenocobalamin form instead. It is more costly though and is less stable than the MethylB12.

Hopefully this may be helpful to someone else who is sick with some stupid chronic illness. :)

Feeling Odd, DMPS and Robins

2011-03-04T13:50:00.000-05:00

I have been feeling out of it these past few days. I cannot put my finger on it, but something is not quite right. It's like low cortisol symptoms but taking more doesn't do anything. Blah!    It also feels like low blood sugar, but that does not seem right either.

I'm getting this weird achy pain in the front of my head. Typically a mild headache mean low cortisol for me and I take an extra 2.5 or 5mg and I'm all better. Not this time around.   Was it the extra 40mg I took that has my body messed up now? Was it just the surgery itself because I could have been exposed to some mercury? I have no idea. Or maybe it's because my sleep schedule is sooooo messed up! Perhaps this is more likely the case because I'm trying to switch my schedule around, so I am not taking my HC at the same time each day.

Well whatever it is, I hope it begins to pass.

In other news, I think I'll be getting DMPS from this local doctor. I had to basically beg him. Interestingly I had him take my BP while sitting and standing to let him to see what happens. My bp was like 145/90 sitting and as soon as I stood up he said my heart rate went insane but my BP didn't change at all. I was just glad he got to see it in action in his own office. I was sweating soo much and was feeling completely insane during that appointment. My norepinephrine goes through the roof when I'm engaged in deep conversation, which would raise the BP quite a lot. It can be unpleasant and I'll profusely sweat with pit stains and everything. That's so attractive!

Completely unrelated--I noticed some American robins are back in the area scrounging for food in the yard. I guess spring must be closer than I expected which is scary for me.   The warm air is going to kill me this year.

Amalgam Tattoo is Gone!

2011-03-01T13:55:00.003-05:00

Amalgam Tattoo Removed

Well today I got the amalgam tattoo removed. I was soo nervous! My biggest concern was this nerve my previous dentist talked about, so I brought it up. The oral surgeon said there was a nerve there (he had a name for it), but it is very large and isn't something you would accidentally hit. He said if there was damage to the nerve that I'd lose feeling in my lower lip. However he assured me it wasn't going to be an issue and if it was he would talk to me about it. Phew ok that made me feel A LOT better.

He asked me if I wanted to do it now and I said sure why not! Overall it was easy and not a big deal at all. I took some extra hydrocortisone (40mg) just to be sure but I probably could have gotten away with an extra 10 or 20mg.

The area was numbed and then the oral surgeon went to town. The nerve was not an issue at all. In fact he said he did not even see it, so that was good. He went all the way through "multiple tissue planes" to the bone and I could feel the pressure of him scrapping the bone!! WOW! Thankfully the numbing was good, so I didn't actually feel any pain.

Afterward he assured me it was highly likely this spot was just an amalgam tattoo. He said it looked consistent with one as he was removing the tissues, but it is important to know dark spots in your gums can be cancerous too. Because of that, the tissue was sent out for pathology and that report will come back in about a week. I go back to see him next week just to make sure everything is good.

There are dissolving stitches on the incision. It is very bloody and raw looking at the moment, so I have to be careful. He said to take it easy brushing in that area, but I can eat and drink whatever I want. My lip is still really numb, so I am taking it easy. It's funny trying to put lipstick on with a numb lip. haha

He asked me before he got started if I wanted pain pills. I was caught off guard by this question because I did not even think about the fact this might hurt afterward. I was so nervous about the nerve and the procedure, my brain completely left out the part this wound might be extremely painful. haha I told him I am not a fan of pain pills as they make me feel so out of it, but he gave me a prescription any way for vicodin. I did not get it filled yet, so I am hoping it does not hurt too bad. I can already feel some of the novacaine wearing off though and I do not have a good feeling about it. hahah!

I was planning on taking a picture, but I don't know if I can pull my lip back that far without disturbing the area. It is hard taking a picture of this area, so we'll see...

If any of you have a dark spot on your gums, please have it looked at!! Especially if it came out of no where and not related to a tooth restoration or filling. I will let you know what the report says when I see them again next week.

One thing to note. This doctor had a general idea what POTS was and he knew that I needed to take extra HC for the procedure. I was impressed!

Update @ 7PM
The novacain wore off hours ago and it is sore only if I move my mouth around. So I'm trying not to disturb it at all. I don't plan on needing the pain pill because it is only very tender otherwise. Thankfully it is not a bad throbbing pain I have had with other tooth aches and such. Nonetheless this sore is going to be a pain in the ass, I am now realizing because I cannot eat normal foods. haha

Update @ Midnight
Now it is hurting and I don't know. Nothing has changed with it. Eating earlier was rather interesting and I made myself some mashed potatoes. It just more annoying than anything. I want to be able to open my mouth up the whole way and I cannot. Doing that pulls on the stitches and that doesn't feel very good.

However I was able to snap this picture of the wound (seen at the top). It's already looking WAY better than earlier today.

First Walk of the Season!

2011-02-28T20:22:00.000-05:00

It was still chilly yesterday but my husband and I went for our first walk of the season. It was beautiful because there was still ice on the lake. I should have brought my camera with me, but did not think about it at all.

We did not walk the full loop, but did about half way around and I decided it was better to take it easy. Since it was our first walk, we are out of practice and I didn't want to collapse after ward. haha!

None of my heart monitor watches work anymore, so I could not check my heart. Sometimes I think it is better that way... We walked up a steep hill and my heart immediately went insane. Probably 140's, so I know this summer is going to be rough.

I am so nervous about tomorrow (oral surgeon). AHH!!

Amalgam Tattoo

2011-02-25T01:46:00.003-05:00

I've had this amalgam tattoo since I was 8 or 9 years old. The dentist who removed my amalgam fillings said it was in a really bad place. He was concerned about a nerve that runs near that area which could paralyze my face. Ok not cool.

Well this week I am having an oral surgeon take a look at it to see if it is possible to have it removed. This thing is huge and I'd like to get the remaining amalgam out of my body to see if it makes any difference. I would have done it sooner, but the fact my dentist (whom I trust) said it was probably not possible, made me sort of forget about it. After reading a few studies, I am determined (within reason) to get this thing removed. It has been shown to increase your risk for mouth cancer and sinusitis. I have a stuffy nose almost all the time. In fact my nose drives me absolutely insane at times!

Here are a few studies that suggest amalgam tattoos are anything but "benign". In the very least they are making your immune system go crazy!

Ugh the tooth next to the amalgam tattoo is also leaking some sort of metal. The dentist who did that filling failed hardcore and the metal post which is supposed to hold the tooth in place is sticking out of my tooth deep under the gums. That's a $1200 crown I can't afford at the moment. It's been like this for years.

Feeling Rundown

2011-02-23T05:00:00.004-05:00

Today I was feeling quite run down after coming off of chelation. I was depressed and just could not get moving at all. Blah. Hopefully tomorrow is a little better.

It did not help we got about 9 inches of snow yesterday and the driveway needed cleared out so we could run some errands. As soon as I started shoveling, I knew it was a bad idea. I did as much as I could and then thankfully my husband finished as I cleared off our car.

I do much better in the winter but I HATE shoveling snow. It is a POTS patient's nightmare. You are obviously upright, but you are also using your arms and constantly digging into the snow (bending down some) and then standing fully upright to dump the snow. With all of the position changes, the BP tends to fluctuate a lot. I recorded one of my highest HR's ever while shoveling at 186.

For me it is absolutely imperative that I keep cool and start taking off my hat and jacket if I begin to feel warm. If I start to sweat, then it is all over for me and my HR is probably already in the 150's. Shivering is better for me! It's not uncommon for me to wear a tank top under my wool coat in the winter...

Health Timeline

2011-02-21T22:44:00.005-05:00

This is the timeline I provided Cleveland Clinic and figured I should post it here for future reference. I have added what happened since the visit to Cleveland Clinic too and what their findings were.

There was a little bit of "mainstream doc spin" in this timeline since I presented it to Cleveland Clinic. However it is accurate. I simply left out any references to mercury toxicity though, obviously.

Summer 2000- Heat intolerance was noticed for the first time. Was asked to try out for marching band which included 2 weeks of band camp at the end of August. The heat was absolutely debilitating. I nearly fainted, passed out every single day outside. The 'band moms' told me that I looked very pale, blue and had to sit down to feel better. Since I played trumpet I had to keep my arms way up, which made me feel so much worse. I kept water with me at all times and wore as little amount of clothing as possible. Still this was not enough to keep me from feeling ill. I had a terrible sore throat and just thought that the lightheadedness was from being sick.

Fall 2000- At some point I went to the doctors because I was having extreme fatigue. I knew something was wrong when I started sleeping during class. I would sleep at any given time (bus, lunch, during class). Finally my PCP told me I had EBV and to take it easy for a while. I was told to quit marching band and to not partake in physical education at all.

I became anorexic around this time. I would overexercise and eat very little foods. The heat intolerance and lightheadedness continued.

Eventually my menstrual cycles stopped. I assume from the tremendous amount of stress my body was under since I was not eating properly. They were gone for about a year's time and only came back after I started to eat better. I think I was eating well for about 6 months before my periods came back. They have always been very regular since with a few exceptions here and there.

May 2001-I went to prom with a friend. It was soooo hot and I nearly fainted multiple times on the way there. Waiting in line to take pictures was soo difficult. I just pretended everything was okay and once we got into air conditioning, I was feeling much better. At this time, I was having severe digestive issues and had to take digestive enzymes when eating anything. This is when my lactose intolerance hit its peak.

June 2001-My friend and I went to our school picnic at a local amusement park. It was a very hot June day. I knew immediately that I was not feeling well. I had extreme nausea and a feeling like someone was punching me repeatedly in the stomach.

As soon as we got there, we decided to ride our first roller coaster which I've always enjoyed. We were standing in line when I suddenly felt myself become very weak and heavy feeling. As soon as I told my friend that I was feeling ill, I crashed down to the pavement. I could not see anything nor hear anything around me, yet I know that I was conscious, but could not lift myself up. My friend said that I turned blue and ran to get some help. I was taken to the first aid station where my BP was 60/40 and was told that I should rest and that I was probably dehydrated. I slept for nearly 4 ½ hours and thought that I had only slept for like 20 minutes.

Even after getting fluids in me and resting, I continued to fall down and feel extremely nauseous all day long and my parents picked me up from the amusement park.

This is the last time I have “fainted”. Looking back though I believe this was my first adrenal crisis.

Fall/Winter 2001-This was my senior year of HS. It took all my effort and will power to make it from class to class. I knew when it was time to switch classes I'd have to suck it up and make it up the few flight of stairs. Some classes I had to go up 3 floors, which would nearly kill me. Once I got in class, sat down, I'd feel much much better. Despite all of these problems, I did very well in school.

I had major issues dealing with any type of stress. If I had to give a speech or anything like that, I'd begin to shake, feel nauseous, extremely cold and terrified.

Age 18-20 I went to community college and was also working. At first I just had a part-time job and then I started working full-time. I don't know how I even did all of this, but I was completely dependent upon caffeine. Since I worked and lived in air conditioning, my heat intolerance wasn't as noticeable.

Age 20-22 I just couldn't keep up anymore. I realized when I stood I'd feel extremely unwell. Previously I never made the connection before! I went to a few doctors complaining of heart palpitations, but they didn't do much nor really care whatsoever. They just told me to stand up slower and to keep hydrated. None of that did anything for the episodes.

Finally I just couldn't even go into work anymore and was calling off quite often. Standing at the jewelry counter, waiting on customers was almost impossible on some days. I'd feel soo ill and would actually lay down or sit on the ground in the jewelry department until another customer came over for help. Since we do not have air conditioning in our house, my body was constantly in that heat intolerant state. My heart would be racing as soon as I woke up and I felt very dizzy and lightheaded. I finally quit my job and haven't worked outside of the house ever since (4+ years now). Standing for long periods of time (like an 8 hour shift) is exceedingly difficult.

May 2007 (Age 23)- My health continued to get worse and worse. I was sleeping 10-12 hours a day and could barely even get out of bed. I went to the ER a few times feeling extremely ill but was always dismissed as a druggy or looking to get pain pills. No one took me seriously whatsoever!

November 2007- I began to develop numbness/burning in my left leg from my hip down to the top of my knee cap. I also started to lose my hair. A dermatologist diagnosed it as alopecia areata. I had several “spots” affected. One was very large covering the entire left frontal area. The second spot was on the back of my head. These spots last for about a year and then cleared up after removing my amalgam fillings and begin chelating. [I changed this because I did not include this in the timeline presented to Cleveland Clinic]

Around this time, I was also diagnosed with partial Diabetes Insipidus. I took DDAVP which helped alleviate the frequent urination. A pituitary MRI with contrast was done and it was normal. I still take this every once in a while if I feel I'm not holding onto my fluids appropriately (urinating dilute urine).

Labwork showed low end B12 levels. B12 injections have helped with the numbness in my extremities. I continue to take them weekly.

December 2008 (Age 24)- I started to develop hives and unexplained itchiness. I felt absolutely terrible. I was losing a lot of weight really fast. General blood work revealed a non-detectable TSH level, normal T4 levels, slightly elevated liver enzymes and high eosinophils. I was told to see an endo to have my hormones further evaluated.

March 2009 (Age 24) The hormone doctor diagnosed me with adrenal insufficiency. I began taking hydrocortisone and florinef, which immediately resolved a lot of the symptoms I was having. Unfortunately the tachycardia upon standing was not resolved. I was told to see a cardiologist for the heart problems.

Approx. June 2009- Allergy testing showed sensitivities to gluten, wheat, dairy, eggs, tomatoes, strawberries and yeast. I still avoid most of those foods today.

August 2009-February 2010 (Age 25)- I saw a local EP who has some knowledge of POTS. I wore a holter monitor for 24 hours, had an echocardiogram and EKG which all showed a normal heart rhythm, but with periods of tachycardia (when I was standing). A tilt-test was ordered and I was placed on midodrine for a short time. It made me feel worse and I discontinued it. The side effects were nearly unbearable. It made me feel very jittery and anxious.

Summer 2010- My EP said the tilt-test was very conclusive and that I most certainly had POTS. After the midodrine failed he had me try a low dose beta blocker (metoprolol ER) and that made a big difference. He was shocked to hear of the positive effects with the beta blocker (since my BP tends to run low) and inferred I likely had a problem with catecholamine levels.

However once the warmer weather came around, the beta blocker's positive effects were diminished by the severe heat intolerance. My standing heart rates are still way too high when I do any activity that requires standing, lifting or bending down.

Fall 2010- Another tilt-table test was performed at Cleveland Clinic with catecholamines. This test confirmed the POTS diagnosis from the other EP, but also showed I have elevated norepinephrine levels upon standing. Once the cool weather came into the area, most of my symptoms have been much better. This always happens to me. I feel great in the fall/winter and then am debilitated during the summer months.

Chelation Round 16?

2011-02-21T20:48:00.006-05:00

I lost track of what chelation round I am on right now. haha Anyway this time around I decided to do something a little bit different. First I wanted to control the hives/rashes better because they really bother me. Taking benedryl makes me feel groggy for hours, which is not an option. What's the point in taking something which then gives me such incredible fatigue I can't do a damn thing? The last time I took 1 Benedryl I could not move my legs. That is how incredibly tired it made me feel.

My husband found out that the itchiness could be an issue with sulfur. I had come across this before in the past, but the only solution people had was to avoid sulfury foods. Well I cannot avoid the sulfur in the chelation drugs, so that wasn't of much use for me. I began taking Pantethine and L-Histidine along with some Molybdenum to see what would happen.

I was a little scared because Histidine was high normal in my NutrEval test, so I did not know if this would be good. Histidine is converted to Histamine and I was worried. haha Anyway, to my surprise I did not have rashes nor hives this time around. I continued to take the Quercetin along with the others.

There is some evidence that supplementing with Histidine can increase zinc excretion, so I started taking more of that to be on the safe side. I have to take my zinc with a big meal or I will vomit it all right back up. Yuck! I am very pleased with this round of chelation. I felt a little run down yesterday but overall, I felt pretty much my normal self with POTS. My plan is to continue using DMSA until I get the DMPS from my local doctor.

My appointment is March 4, so that's not too far away!

This round I also took 50mg of DMSA every 2 hours during the day. Then at night I increased it to every 4 hours because I needed to get some more rest. Every 3 hours at night was killing me and I would wake up every hour thinking I missed the pill. It was a nightmare.

Changed the Look

2011-02-21T20:19:00.001-05:00

Today I decided to change the look of the blog. The template I was using was soo ancient and I was pretty sick of it. Let me know if you are having any problems with reading or seeing anything. I tried to make the colors reading friendly.

Edit: I also wanted to add that I am getting rid of the contact me. I NEVER check that email, so it is essentially worthless to have that listed. If you want to talk to me, then the best way to do so is just by making a comment on my blog. I get notification in my main email anytime a comment is made. Sorry for the inconvenience. I'm just trying to be more honest with myself here. hehe

An Interesting Website

2011-02-17T15:19:00.004-05:00

My husband found this website and I wanted to pass it along to my readers. Be sure to do your own research and discuss any risks with your doctor before beginning any chelation protocol. I'm not a doctor!

The website is called Mercout.com. The website supplies the patient with a 30 day supply of DMPS. The only difference is that you must prove that you have elevated mercury levels in your body with laboratory testing. Mercout.com offers a test you can buy through them if you do not have a test, but they will also accept a test you already had done previously. I think that's pretty awesome! Since DMPS is prescription, this is necessary for the company to cover their butt.

The website says....

Step 2: Physician Review of Your Mercury Test Results

If the urine test by the independent laboratory indicates that your mercury level is elevated, it is very likely our physicians will recommend that you begin to remove this toxic substance using the MercOut Detoxification Program.

I definitely have laboratory results that show I have elevated mercury levels in my body, so I have no issues with "proving" it.
I'm starting to think that I need DMPS to get the mercury out rather than DMSA. Studies show that DMSA pulls only 1/5 or 1/10 the amount of mercury than DMPS. This challenge test was complete with a small dose (~65mg) of DMPS injected in my arm very slowly. I really doubt DMSA is grabbing anywhere near 30mcg of mercury every 4 hours. I'd love to prove that, but I just don't have the $$ to throw around to experiment.

It got warm today and I'm already getting symptomatic. This spring/summer is going to be rough unless I get this metal out of me. I'm not about to chelated for 8 years to have minimal improvements.

Speaking of which, I am chelating right now. I'm taking 50mg of DMSA every 2 hours. The Cutler folks will think I'm crazy for even considering such a high dose, but in his own book he says you need high doses to get this crap out. 5mg every 4 hours isn't going to do anything to get mercury out of your body. It's like throwing a little cup of water on a large fire. You need a bucket of water to even begin to put the fire out. Have fun with your cups of water...

Who Is Really Recovering?

2011-02-12T19:54:00.006-05:00

My husband and I have started looking for real success stories of people who recovered from mercury poisoning. I am not talking about "feeling a little better". I am talking about people who are able to work again, live a normal life and don't have any complaints on a daily basis. We have found there aren't that many people out there who are recovering, especially those following Dr. Cutler protocol. I have begun to question whether or not this is doing anything for me other than make me sicker and sicker.

Obviously something is not right if people are not getting better. The Frequent Dose Chelation yahoo group is full of the exact same people I saw 2 years ago and everyone is still sick, complaining of this and that. Sure some people are posting to help others, but most of them are there because they are sick. If it is mercury causing the issues and chelating with low dose DMSA and ALA isn't working, then we need to reevaluate our chelation protocol. Doing the same thing over and over again, expecting different results is the definition of insanity. haha If Cutler's protocol isn't working, then I'll abandon it completely and start doing something else. I have no issue with admitting I was wrong.

The only people we have both seen get healthy (not just "better" which is usually not much better at all) were those who went with oral DMPS or IV DMPS. This makes me really wonder.

I want to try oral DMPS and see how it goes. I have an appointment with one of the local doctors I used to see years ago. He's the one who did the DMPS challenge test, so at least he knows of DMPS. It's pricey and I have no idea how I'm going to afford this, but I have to try! DMSA is just not cutting it and I don't want to be here 3 years from now saying the same thing. Damnit I want to be healthy and never have to read any of these stupid health forums ever again.

The Rashes Have Begun

2011-02-11T16:53:00.004-05:00

When I chelated the first time around around late 2008, I started to get these horrific rashes that just made me want to jump out of my own skin. At the time, I wasn't sure what was going on and thought maybe it was a food allergy or something. Well I can now say without a doubt that it is either the actual chelation itself, the metals coming out of the body or DMSA. Maybe even all of the above! They show up even on days where I'm NOT chelating, so I'm not 100% sure what's up.

When I had these rashes the first time around, my eosinophils were through the roof. I suspect they are this time too. Like the last time, I have Dermatographic urticaria. If I scratch an area then 10 more hives pop up and it's a never ending vicious cycle. The itching is so bad that it makes me twitch at times...

So what to do?

I really do not know what to do. I cannot live on benedryl or zyrtec every day of my life. Benedryl isn't even an option unless I'm about to go to sleep. It makes me soo sleepy. If I can find the camera, I'm going to include some pictures of the rash and edit my post to include them.

Today I feel very tired too. I woke up and just felt exhausted which is not normal for me at all! My face even feels puffy too. I'm trying to work but it's pretty tough. I am not on round either. I think I stopped 2-3 days ago because the headaches were getting out of hand.

I really wish I could try DMPS and give up on DMSA. Makes me wonder if it's doing more harm than good.

Chelating Again

2011-01-02T15:58:00.003-05:00

Yesterday I started chelating again and I remember why I hate it so much. Terrible insomnia, Mild Fever and my heart rates sitting were as high as 130! This morning I took my BP sitting and it was 121/80 HR 122. Scared me a bit. I have no idea why this happens when I take DMSA, but it is just terrible. If this doesn't settle down, then I might have to stop again and try ALA or something.

The McComb's Plan...What it's Done

2010-12-09T05:12:00.004-05:00

About 2 months ago at this rate, I went on the McComb's Diet Plan. I mentioned it in one of my posts in November. You can read about the plan on the doctor's own website. I am not taking his supplements nor doing the sweating protocol on his website. Just the diet. Wanted to make sure that was clear...hehe

What has it done?

Eliminating sugar has been tough, but I have been very successful with it and am loving the results. I dropped about 10-13 pounds depending upon the time of day I weigh myself. This was really unexpected and not why I even did the diet in the first place. I do miss my Chai Tea Lattes at Starbucks, but the benefits of the diet far outweigh any emotional pleasure I'd get from drinking a Chai. haha

Aside from the weight loss, my skin is looking really good. Over the past 3-4 years my skin has been way more prone to break outs for some reason. Especially on my forehead and near the temples. Well I can say without any doubt that this diet has really helped my skin. I still have terrible problems with blackheads, but at least the pimples are gone.

My heart is no different. Sorry no cure for POTS here! haha The first week, I was having really strong sugar cravings and the dizziness (white outs) upon standing seemed to be worse. However that has normalized now and I'm not getting that anymore.

The mid afternoon crashes or need to take a nap is now gone. It took at least 2-3 weeks on the diet for this to occur, but I no longer need to take a nap mid-day. I think this has to do with blood sugar, but am really not all that sure.

This diet is very similar to how I was eating when I went on Dr. Mercola's Carbo Nutritional Diet many years ago. Interestingly I felt pretty good back then but the POTS was kicking my butt. I've also tried to lower my salt intake a bit just to see. My legs, especially the calves and ankles still seem puffy to me.

Will Likely Continue On

I plan to continue eating like this, but might allow myself to have 1 treat a week. I can let that be whatever I want, but it can only be 1. However I will certainly put an end to that if I start to notice problems.

What I Found Out...

I have found out that dairy is a major issue for me. My husband experimented making his own kefir and yogurt. Both of them made me so ill that I realize I must be allergic to the actual milk protein (Casein) rather than just being lactose intolerant. There isn't supposed to be any lactose in either of those (from what I've read), so it makes little sense that in 4-5 hours after ingesting, I get the typical bloating, gas and intense stomach pain. For 3 days after, I was passing pale stools that was likely undigested milk proteins and fats. Sorry for the details, but something is not right and that was a huge wake up call for me. No more dairy!

We will see how this goes.

In regards to my labs, I haven't heard anything. My doctor may be holding them until we see him in office. Money is tight so I have no idea when that will be at this rate.

What I do in my Spare Time!

2010-12-01T15:59:00.003-05:00

I wanted to make a happy post today on my blog! What do I do in my spare time?

Well I quite honestly I lead a pretty sedentary lifestyle. Every morning I look forward to my morning cup of coffee. As I get older, I am finding that I am actually developing a palate for coffee. I am starting to become a coffee snob where I only use a Coffee Press these days to make coffee!

I absolutely love my Bodum Coffee Press and don't know what I'd do without it. My mornings would be quite sad. Even though I really like coffee, making it can be annoying. One morning I made the comment, "I wish there was a machine that made coffee". My husband thought that was the most hilarious thing because DUH there's tons of machines that make coffee. LOL What I really meant was, I wish there was a robot that could make me coffee in the coffee press. That line has now become a family joke. "Man I really wish there was a machine that made coffee". I'm glad I entertain my family.

The one other thing that I love even more than coffee is singing. If I tallied up how much I sing every day it's likely pushing 8 hours. I am not kidding at all and my poor husband has to hear it all the time. haha My mother was always singing so I think that kind of stuck with me. She would listen to various singers like Bette Midler and Celine Dion. I'm sure there were others, but that's all I can remember. My family went to church every Saturday night and I started to realize that I had a really good singing voice. However with my lack of self-confidence I had been afraid to let anyone know about it and sort of hid it. A few months ago, I decided to record myself to see if I sound good on tape. To my surprise I think I sound pretty darn good for having very little official vocal training.

I really wish to write some music and at least put it out on the internet for people to download. Singing makes me feel so good. It's like all of my problems go away and it is a major destressing tool I use. If you are interested, I have put up a few covers on Youtube. Let me know what you think--if you hate it that's ok. There is always room for improvement with singing. My trills, slurs, vibrato and hitting high notes could be much improved and I hope to take vocal lessons again one day. My last vocal teacher was pretty terrible and I sang better than her.

Getting some Labs Done

2010-11-29T14:30:00.003-05:00

Well today I went in to get some labs done before we make the journey to see the doctor. We travel 6 hours to see a doctor that knows what he is talking about and in the very least listens to my concerns. Does he have the answers to everything? Absolutely not. He won't even touch the POTS issue, but at least I have him there for hydrocortisone, florinef and really anything else hormone related.

This time I asked him to test some basic things and a few not so basic things that I am interested in. I told him not to even bother with my thyroid because I have NO intentions of taking thyroid meds regardless of my results.

I got the following tested:

Fasting insulin
CMP (this is for electrolytes, glucose etc)
CBC with diff.
Ferritin
Vitamin D
Total Testosterone
Free Testosterone
Antiparietal cells antibodies test
Intrinsic Factor Blocking Antibody, Serum
Urine Methylmalonic Acid

I wanted to check my fasting insulin again because the doctor in Michigan checked it and it was kind of high. CMP is good to check my electrolytes and other random things. I haven't had a CBC checked for at least a year, so this is long overdue. I don't expect to see anything out of the ordinary but it is important to spot check.

Ferritin and Vitamin D are both going to be awful. The doctor threw those ones in on his own. I expect my ferritin to be around 20 and my vitamin D to be about the same. Not good, but I hate taking those as it makes me feel toxic.

Total Testosterone and Free Testosterone was something that I added in. Since I'm taking DHEA, I wanted to make sure it's not too much. I don't think it is but I think it is important to verify this with labs to be safe.

The last 3 tests are all for B12 deficiency and pernicious anemia. I wanted to finally put this PA idea to rest. Most who have PA will have either one of those antibodies, so we will see. I also got the urine MMA checked to see if this correlates with the MMA test that Genova Diagnostics did in the NutrEval test.

I don't know if I'll get the results to these before we see him, but I might email the office manager and ask her to send them so I can look them over before we come in. This way I can have any questions ready. :)

Just a Reminder

2010-11-06T05:10:00.002-04:00

I just wanted to remind people that the information on my blog are the personal experiences I've had dealing with my health issues. I also discuss things I've done to try to overcome them. This is not meant to be medical advice. Even if we have similar symptoms, you need to discuss everything with a doctor. Adrenal insufficiency is a serious condition that needs to be followed by a professional. I'm just some geeky blog writer that likes to complain A LOT.

Any information you gather from this blog should be taken to your doctors to discuss. I have a doctor that I work with and so should you!

-Birdlady

I'm still here

2010-11-04T05:56:00.002-04:00

Just wanted to check in and say that I'm doing well. The weather has cooled down so I'm just enjoying life at the moment. I've been working a lot, like 16 hours day for my husband and his business. Things are good though! Sure I feel my heart rates are up, but with it being cooler I'm like 75% better. I don't have the shortness of breath or the "I feel like I'm dying" feeling.

I always forget that fall/winter I am actually somewhat normal feeling. :)

Here's a quick update on what I've been doing though. I started following the McComb's Diet plan about 3-4 weeks ago which is supposed to be for candida. You are probably think...OMG has Birdlady lost her mind!? Yes I am doing a candida diet even though I've made fun of them before haha. You can read about the diet at the doctor's own website, which is much different than most "candida" diets. I realize that I was mostly following the plan any way but had to cut out a few more things (all sugar, all dairy, all nuts).

At first, I really didn't want to do it because I knew I'd have to be on my feet more to cook every meal. You also have to get rid of butter which I've never done before. It's really hard to eat some foods without butter like squash, potatoes, rice etc. In addition to this diet, I've also stopped supping with salt. I lost 4 pounds in a week. I'm so sick of POTS patients being told to use salt like it's even doing a damn thing for us? DUMB!

In addition to the diet, I am also taking THorne Research Formula SF722 which is 10-Undecenoic Acid. I take 5 Gelcaps 3 times a day away from food. I have no idea if it's doing anything, but I'm just going to stick with it.

Overall I've lost 7 pounds now. I am absolutely LOVING it! I am finally back in the 120's which I haven't seen for a long time now. Now if I could get my heart to chill out when I try to do leg exercises, I'd be soo happy.../sigh I still cannot exercise and I have to keep myself cool at all times. If I am going out to a store, I wear tank tops underneath my coat so I can cool down fast if I start to overheat. So far this has been working really well. Some days I just wear shorts around the house to stay as cold as possible.

This post is all over the place, but I just wanted to let everyone know I'm doing well!

A little rant...

2010-09-26T09:20:00.002-04:00

I frequent a lot of different "health" boards where people share their experiences and lab work. Most of these forums have to do with adrenal and thyroid issues and over time I've come to the realization that they are all insane. Yes insane.

There is a growing group of people who are starting to spread these twisted ideas into other forums with nothing to back up what they say. They are giving people such horrific advice I actually want to vomit. Most of the time I seriously HAVE to comment or I fear for this person's well being. I have become the disenchanted voice on a lot of these forums, but for good reason. All of their advice did not work for me, so when I see people regurgitating the same bull shit over and over again it makes me very angry. The very people giving advice are sick. Can someone explain to me how that even makes sense? Why would you ask advice from someone who isn't feeling better and is posting their own questions to the group?

I know that these groups mean well, but I think they need to be more careful on what is being said. There is a fine line between "giving your own personal experience" and down right telling people that their labs are wrong (even when they are within normal range) and saying they need to take potassium, sea salt and whatever else they decide your labs show.

Let me try to come up with some examples here. These labs are all made up numbers off the top of my head, but the concept behind it are real life stories.

Person #1 Doesn't have many symptoms of hypothyroidism, but wanted to see their levels.
TSH 1.5
FT3 3.6 (2.4-4.2)
FT4 1.4

They are told they could use thyroid because FT3 used to go up to 6. I have no idea where people come up with this stuff, but it's ridiculous. I think these are damn near perfect thyroid labs! I do agree that lab ranges are very inclusive, but if someone feels ok where they are don't tell them they need to be a certain arbitrary number to feel better.

Person #2 Male, complains about being depressed, anxiety and has POTS. I always take special interest in cases where someone states they have POTS. Typically they don't like to hear what I have to say though because everyone at these forums and groups have told them that HC is the magic bullet (when it really isn't in most cases).

Here's the general idea of labs.
ACTH Mid range of lab
Cortisol AM Top of range (but I know that this can be artificially high)
Aldosterone Low (We don't know if they salt fasted, so I throw this out)
Testosterone Very low
Vitamin D Very Low
Calcium Top of range
Saliva cortisol results High in morning, Drops off at noon then perfect the rest of day.

One group said this guy needed HC immediately and his aldosterone was awful. Since we don't know if he salt fasted, you can't make that assumption on the aldosterone. As for his cortisol levels, I have no idea why someone would think HC could even begin to help this person. There are no indications that he needs it at all. Not even close.

Then he is told to IMMEDIATELY get on vitamin D. Well dumb asses if you knew what the hell you were talking about, you'd know that this man needs to get his parathyroid hormone checked before doing that. Having a high calcium (anything above 10.0) with an extremely low vitamin D is TEXTBOOK presentation of hyperparathyroidism. Oh but these groups are so hell bent that everything is either thyroid or adrenal, they miss the obvious.

That's all the examples I feel like giving, but there's so many. I'm so sick of these adrenal people telling everyone that POTS is cured by florinef and HC. You are WRONG. Maybe there is a small percentage of people who have Addison's and this is true, but POTS is much more complex.

Not everything is adrenal and thyroid. There are other conditions and body parts ya know....And we don't know everything. If you think you know everything then you are in for a rude awakening. I learn something new every day. My thoughts on just about everything when I started this blog a few years ago has changed 180 degrees.

I think going on HC and thyroid for everything is the wrong direction. EVERYONE is told their levels are too low or not "optimal". I haven't seen a single person told they were OK...

I've Given Up

2010-09-14T07:17:00.001-04:00

Well today I'm raising my HC dose again. My skin is tanning around my eyes, so that's enough for me. It looks like I got punched in the face. I guess it's HC for life at this point.

Ugh HC Weaning Isn't Going Well

2010-09-13T06:09:00.003-04:00

It's been another 10 days or so and my body cannot adjust to this lower dose of HC. Even my husband is seeing it. He's now remembering all of these weird symptoms I had that disappeared on HC. Now they are coming back and we aren't forgetting any longer.

The past few weeks I've constantly had that "I'm just feeling weird" feeling. The ringing in my ears is getting worse. I have moments of complete hearing loss in my ears for a few minutes at a time. I've been feeling sick to my stomach, almost flu-like without actually vomiting though and I've been having crazy hot flashes and chills. I'm way more thirsty and my pee is clear. This is all from lowering my HC dose, which makes no sense to me. I am getting up in the middle of the night to pee too.

Yesterday and the day before I had to take more HC. I was sort of afraid that if I didn't I'd start going down the adrenal crisis path. Ugh. I just hate to admit defeat on this because I really don't want to have to take HC for the rest of my life. It's pretty frustrating.

Weaning Down HC: How it's Going

2010-09-02T23:13:00.002-04:00

I can never remember what I even put on my blog these days. haha Well after a lot of pondering, I have decided to start weaning off the hydrocortisone. Yep...It's going to be bad. I know.

I've been dosing 15mg of HC at 7.5, 5, 2.5 for probably about 2-3 weeks now. It's odd because now I am noticing symptoms. I am feeling dehydrated for the first time in a year. Every once in a while if I am busy doing something I forget to drink, but I almost always have a drink of some type in my hand. I particularly like orange juice with a sprinkle of salt in it.

Well for the past 2-3 nights, I've been needing my water bottle next to the bed. Bad sign. I am also having night sweats and my fingers are swelling up like a balloon at night. I've noticed my face is looking puffier too. Last night at Wal-mart I was totally regretting not having a drink in the car with me. I used to be like that a long time ago...

Typically puffiness most would associate with over replacement. I can assure you that 15mg is no where near over replacement. I am struggling with nausea on a daily basis on this dose, but I am trying to see if I can even go any low. If I can't go any lower, then I think I can confirm true adrenal insufficiency rather than just fatigue.

I'm rather shocked at the weird symptoms I am getting. I never thought the thirstiness was fixed with the HC!

I'm giving this dose another 2-3 weeks and then I'll be going down to 12.5mg.

Got Labs: More Nothing

2010-08-13T02:00:00.002-04:00

Considering how sick I am, I am always amazed at how nice things look on paper...lol

Creatine Kinase 55 (33-194)
Lactate 0.57 (.50-2.20)
Pyruvate 0.89 (0.30-1.50)
Copper 87 (70-175)
Ceruloplasmin 25.1 (18-53)

Wrist pain is fading

2010-08-09T01:12:00.002-04:00

Just wanted to let everyone know the wrist pain is way way better. I don't need the stupid bandage anymore!

My "Go-to" for Ovarian, Uterine Pain

2010-08-07T01:59:00.003-04:00

I'm not sure I ever documented this before on my blog. I think these health problems were LONG before I ever started blogging and it was so long ago that I just never really thought about it. I really have come a long way in my health journey.

This isn't the first time I've had uterine pain. I also have it about 5-6 years ago. Right around this time is when my trust in doctors started to rapidly fade away. I was having A LOT of uterine pain during intercourse and it was really causing me a lot of emotional distress. I sucked it up and finally decided to see a doctor about it. It's sort of an embarrassing problem to have, so I didn't want to tell anyone about it especially at age 20-21!

I went to see this gynecologist who was supposed to be "one of the best" in the area and after examining me, he decided that there was indeed something wrong and he wanted to do exploratory surgery to see if he could find anything. He wanted my permission to remove any endometriosis he saw during the surgery. Well I told him I would have to think about it. I don't take surgery of any type lightly. He also suggested, if I didn't want to do that, then I could be placed into early menopause at the lovely age of 21!! WOW I told him that wasn't even an option!! I knew nothing back then about the medical system and was completely dumbfounded that a doctor would even suggest this for someone my age who was newly married last year... I opted for the ultrasound which ultimately showed nothing, but I knew I wasn't crazy.

This is really when my search for alternative treatments started. The lack of answers from this doctor sent me down the "rabbit hole" as they say. After looking up the symptoms of uterine fibroids, I decided this was probably what was wrong. My husband found a supplement that was supposed to dissolve fibroid tumors and we ordered it. I figured I had nothing to lose right?

Within the first few days of taking it, I noticed pain in some of my joints and in areas where I suffered injuries years prior. When I was ~10 years old, I stepped on a toothpick which went straight into the heel of my foot. That exact foot and heel was hurting terrible while taking these supplements! I could not walk on it at all for an entire week. I thought it was really weird and didn't put 2 and 2 together until a few days went by. It turns out this supplement eats away fibrin from current or past injuries. I knew that it must be working, so I continued taking it.

Things started to get better. The uterine pain was lessening and lessening and lessening. Then after some time I realized I just wasn't having the pain any more at all!..This didn't happen overnight, but it also didn't take like 3 years either. I believe I finished off two 450 capsule bottles and then decided to stop taking them to see what would happen. Well nothing bad happened. The pain was gone and stayed away for a long time.

Well since the pain appears to be bad again, I figured I better get back on the supplement to see what happens. Thankfully we had an old bottle in the refrigerator! I took 5 pills right before bed and woke up with some wrist pain. I thought to myself, wow this is really odd. What the heck did I do to myself while I was sleeping? At first I thought I had slept on it weird. I took my next dose that morning, once again not thinking about the supplement. We were out at the store when it just hit me like a ton of bricks. OMG it's the pills making my wrist hurt!

Once again, just like the last time, the Vitalzym is making my joints hurt for some reason. It's obviously dissolving fibrin or some type of scar tissue. Not only is wrist hurting really really bad--I have it wrapped up in a bandage--but my left ankle bone started to hurt tonight too. haha You have no idea how incredibly painful writing this post has been and it makes me wonder if it's healing damage I've done from working on the computer all of these years.

I guess there's a new reformulated Vitalzym that's supposed to be even more potent. I still have the old stuff. If I can find the funds to buy the new stuff once this bottle runs out, I'll let you know how it works. I guess you don't have to take as many pills to get the same strength which is great. Right now I'm taking 15 pills a day, which can be hard to get down. If you are interested in Vitalzym just do a google search. Lots of online stores sell it, but I recommend doing some price checking! Some websites are WAY cheaper than others.

I'm curious to see how this works and I'll keep updating.

The PVC's are gone finally

2010-08-05T00:30:00.003-04:00

Yesterday I noticed a drastic improvement in my heart rhythm and today it is about the same. I had about 5 or 6 PVC's compared to 1 every single minute or more! I don't know if it's because I stopped the B vitamins or if I added in some extra potassium and magnesium. I'm sure those didn't hurt at all, but I really think it was discontinuing the B's that did it. Now this time, I'm starting each B vitamin on their own and giving it a week to see what happens. That way I know RIGHT AWAY which vitamin(s) is causing the problems.

I might need to go to the gynecologist. Not to be too gross, but I was having a lot of mid-cycle pain this month which I haven't had for a while. I also noticed that my ovulation discharge was a weird orangy-red color which I've NEVER seen before. Now when I urinate or move a certain way I am getting ovary pain and making love to my husband was so painful I nearly threw up! Sorry if this is TMI, but I think it's important to document this. I've NEVER experienced pain like this before. I stood up and nearly collapsed. The nausea was soo bad, I had to just lay down for a while until it all passed. My abdomen is feeling kind of odd right now too...

I have no idea what is happening here. I always feel like something new is showing up.

I hate doctors

2010-08-02T19:15:00.003-04:00

The PVC's are just not going away, so after a long internal debate I decided I should go to the local urgent care to make sure everything is ok. I just wanted to make sure that the rest of my heart rhythm was normal. I've been getting the PVC's just about every minute, which if you look online isn't THAT bad. But still, it is pretty darn uncomfortable especially when this is happening with HR's into the 140's!!

I get into the exam room and the nurse says they usually just send heart palpitation patients to the ER as they can't really do much here. "I'm not a doctor though, just telling you what normally ends up happening". I was thinking to myself. Well I didn't go to the ER because it's not to that point.

They do an EKG and of course it's always lying down and when you aren't symptomatic. I hate that. The EKG comes back completely normal which was great, but it didn't capture what I was experiencing. Literally 5 seconds after she printed that stupid sheet out I had like 2 or 3 PVC's upon sitting up! /sigh

The doctor comes in and he is insulting and patronizing me immediately. I'm thinking to myself, what did I do to deserve this type of treatment? I come in here because I wanted to make sure I wasn't in SVT or something and this guy is just lecturing me about stupid shit that doesn't even matter to me.

He tells me that I need to start working again because it's clear that I need more structure in my life and I need to be "part of a team". He said that when you don't work, your heart doesn't have anything to respond to so it starts to race at times when it shouldn't. If I had a job that would be the best thing for me. Can I say WTF? I just let him continue because I wanted to make sure he dug himself the largest hole possible with no way out. He keeps telling me that I need to find out what my triggers are for this "POTS" and I need to stop doing it.

"How long have you had POTS". Diagnosed 1-2 years, but I've had it for about 10 years. "Well you need to stop thinking about it and just live. You are worrying too much about this POTS and need to work. This is when I stop him and correct him about what POTS even is because he kept using the wrong words. He was saying Paroxysmal tachycardia or something like that and I told him NO it is called POSTURAL orthostatic tachycardia syndrome. Then I went on to tell him that I used to work. Quite a lot actually and I eventually had to quit because I COULD NOT WORK ANYMORE due to my heart. "Well you need to find a job that you can handle because that's the best thing for you." WOW WOW WOW. I was so mad at this point, I picked up my purse and said, well there is nothing you can do for me, so this is over.

He stopped me. That's when he realized that I wasn't a freakin' idiot and said, "I know that what you feel is real. I'm not saying that your HR's aren't high or that you aren't having PVC's, you just need to realize that this will never go away and you need to live with it. I told him, what the hell did he think I've been doing for the past 1o years. I've been DEALING with it.

That's when I brought out the big guns because you have to think like a doctor. I said that I had been to Cleveland Clinic and they diagnosed me with this and they believe it's a dysfunction of the autonomic system and has nothing to do with the fact that I'm not working. That's when he started telling me about his lovely daughter. She's such an amazing basketball player. Very very fast runner and can do so much stuff. Thanks asshole for reminding me how much shit I can't do on a daily basis. He said that she has nervous system problems too, but she learns to deal with it by playing basketball. That's her way of channeling it. WTF? I asked him if he's ever had a 140 HR just from standing up from a chair. He gets a bit quiet and tells me that he had a fast HR a few times and it can be scary. That's when I pushed even further and said, what if it happened EVERY TIME YOU STAND!!! He had nothing to say about that.

He asked me what Cleveland Clinic was doing about "POTS". Oh to interject, he was talking about POTS like it was herpes or something. HAHA Just weird. Anyway, I told him that they wanted me to increase my florinef dosage and salt intake. The look on his face was "I have no idea what this girl is talking about, but I'm going to pretend like I do". He said, oh how has that worked for you. I told him that I had already tried that last year and it does nothing for me at all. The only thing that worked was a beta blocker, but as the weather got warm it stopped working because of my severe heat intolerance. To further prove that he had no idea what he was talking about, he said that "Every 5 years or so, car companies come out with new model cars. There are new computers available too. Maybe next year they will come out with a new beta blocker that won't give you heat intolerance." ROFLMAO!! This guy thinks the beta blocker gave me heat intolerance. haha Then I told him about my elevated catecholamine levels upon standing and that has a lot to do with my rapid heart rates. Once again, he had no idea what I was talking about. I totally out-doctored him right there, but this was all on purpose.

Towards the end I was shifting a lot on the exam table, looking at my purse, floor, purse, floor. He said, well I'm very sorry I can't give you a pill here today. I immediately interrupted him and said that's not what I wanted!! He seemed confused by this comment and then he got up and left. He told me I should contact one the hospitals in the area because they have a very prestigious cardiologist/EP department. I told him that I had already...I see the head of the freakin' EP department of that hospital! I also explained to him that I had a tilt-table test. "Oh you had one of those?" I said yeah that's the only way you get diagnosed with POTS and I've had 2. One at the local hospital and Cleveland Clinic. That was basically it. He said to "keep in touch". Why? So I can come back to you to hate myself even more?

What an asshole.

Basically this office visit made me have more PVC's because I was so pissed off by the doctor. I am writing a letter to the corporate office about this. He was the biggest piece of crap I've ever seen since that ER visit like 4-5 years ago who said I was a heroin addict looking for drugs. I believe to this day that was an adrenal crisis...

As Suspected...

2010-07-28T21:27:00.003-04:00

As I kind of guessed, I begin taking vitamins and the heart palpitations start. Why? This makes no sense to me at all. It's not like I'm taking weird things. I added P-5-P (B6), biotin and B2. How is any of that weird!! The other supplements I've taken that have given me heart palps includes l-carnitine and CoQ10...Once again, why?

I don't know what to do about it. I'm thinking this time to just fight through it rather than stopping. I know the weird beats aren't threatening as they've been captured on an EKG before.

We'll see how this goes. I think it has something to do with my breathing and sinus arrhythmia. I believe the PVC's are happening as I inhale or after I exhale.

On a completely different topic. I had terrible mid-cycle pain this month. Last night I was in agonizing pain.

Labs Drawn

2010-07-26T03:36:00.003-04:00

I had to make an appointment with the nearby hospital to get my labs done. First they had to order in the perchloric acid needed for the one test (pyruvic acid). This is a reagent that Labcorp doesn't even carry since there is a risk of explosion if it's not handled properly. haha This reagent must be chilled before applied to my blood, so it had to be refrigerated at least 2 hours before I came in. Hopefully everything was done right. It's the same hospital that did my NutrEval test and that worked out well. Thankfully my veins cooperated really well. Man I could not believe it! That lady hit my vein and the blood just came pouring out hahaha I filled up all the vials in no time and without a tourniquet (except for the initial puncture).

My sleep schedule has been off lately. I think it's because I feel so awful during the day, so I tend to want to stay up later and later since it's usually cooler at night thus I feel better...

Now I can start taking supplements again to see what happens. Why do I have this feeling that I'm going to feel like hell this week? lol

I'll be sure to post my results of the tests when I get them. I have no idea how long that might be...Most of the labs are done at the hospital from what I was understanding, so it shouldn't be too long.

Woohoo! My hormone doc ordered Mito labs!

2010-07-21T02:30:00.003-04:00

My hormone doctor has agreed to order mitochondrial tests for me. The mitchondrial doctor I talked to on the phone a few weeks ago gave me a few tests I could have done to see if this issomething I should pursue further. She did warn me though that even if all of these tests come back normal, it doesn't mean I don't have a problem....haha She just said that if these DO come back high, then we know without any doubt there's an issue. If that is the case, then I'll need to figure out a way to get my butt to Atlanta, GA...One thing at a time...

I just gotta call around and see what hospitals even do them. The one has special handling, so I can't just walk into Labcorp or Quest and get it done.

Pyruvate (Pyruvic acid)
Lactate (Lactic Acid)
Creatinine Phosphokinase (CPK or CK)

Then I added a few of my own to just see what's happening:

Homocysteine
Serum Copper
Ceruloplasmin

I also have to call the insurance company to see if any of these ARE NOT covered...

Still Nothing From Cleveland Clinic

2010-07-19T23:34:00.003-04:00

This really is just unbelievable to me.

I called on Thursday and got the secretary. I thought, "oh good" just the person that I've been playing phone tag with. Well sort of. To play tag you need the other person to try calling YOU back, which wasn't happening. I told her that I was trying to be as patient as one can be, but I've been waiting and calling for the past 6 weeks asking WHEN I'd get my report. 5 weeks ago I was told it would be finalized the next day and then sent out probably over the weekend. Now I call and I'm told the same thing each and every week. I want an answer NOW as to when my report will be in my hands...

She looks me up in the system. "oh..um...I guess there must have been some kind of oversight. I don't know why your report wasn't finalized". I told her that I've been told that same thing for the past 4 weeks and nothing has been done about it. "I will have the nurse call you when it is finalized". Okay so when should I expect the report to be in my hands, so that I know when to call and complain again. "I don't know" Well here it is Monday and no report, no phone call. NOTHING. What in the HELL does one have to do to get a damn report from Cleveland Clinic. This is not acceptable.

I hate to burn bridges, but I don't think I ever want to go back there. Just awful.

So...tomorrow I am calling again. I hope I get the secretary, so I can tell her that whatever it is they are doing to get the report finalized ISN'T working. I want my chart put ON TOP of the pile and it stay there until the doctor signs off on it. Period. If this doesn't work, then I'll have to call the cleveland clinic ombudsman to step in for me.

Still Not Doing Well

2010-07-12T00:54:00.004-04:00

I was really hoping to see some improvement, but I am really bad...again. I felt decent for like 3 days as far as mood goes. But my heart has just been terrible.

I made myself go to the park today to take a short walk. My heart rate was like 150 as we were walking around, but I just made myself continue on. Suddenly it felt like someone was pushing on my throat and I told my husband I needed to sit down like NOW. We made our way to a picnic table and my HR would not go down even while sitting. I laid down on the table and immediately my heart rate went down to 70. /sigh

I felt completely out of my mind like I was watching myself watch myself.

Cleveland Clinic can kiss my ass. The autonomic department is incompetent and tomorrow they will be getting a very mean call from me. I have had enough of waiting around like a chicken with my head cut off. I want some freakin' answers as to where my report is at. They never bothered to call me back last week and now the bitch has to come out to get anything done. I'm going to tell the woman that I want a DATE that my report will be in my hands. Every single day after that report isn't in my hands, I will be calling them. Every single day until it IS in my hand.

My eye floaters/bright things are all back, so this has to be related to me feeling terrible.

I've Been So Ill Feeling

2010-06-30T15:49:00.003-04:00

I don't know what is happening, but I've been SOO ill.

I've been researching non-stop since I got the NutrEval test back. I think I need to further pursue a possible mitochondrial disorder, but just don't have the funds to do it. For now I figured I'd just start on some of the supplements suggested and see how I do.

Well something that I started taking is making me feel terrible! I've never experienced this feeling before. I've had chronic, constant nausea. I feel hungry, but as soon as I start to cook, I can't possibly imagine actually eating the food. I've been making myself eat. My sitting heart rates are way up. I was tachying away at 122 while sitting at my computer chair. OMG!

Yesterday it was beautiful outside, cool with low humidity and I nearly collapsed at the park while taking a gentle stroll. Normally where my HR is like 118, I clocked in at 152, with shortness of breath and felt like hell.

Here's what I started taking:
Fish oil
l-carnitine
P5p (B6)
SAM-e

Today I took nothing, so we'll see how I do. I feel like a piece of shit today. Worthless. What the hell am I even doing here. I can't do anything. My sister wants me to help her buy some trellises from the store and I'll have to tell her I can't do it. What a worthless piece of shit I am. Seriously.

I'm sick of this.

Too Much Norepinephrine!

2010-06-26T03:48:00.003-04:00

I got another call from Cleveland Clinic today. It was the nurse and she said she wanted to get clarification of my catecholamine results since she was not sure how to read them to me.

Supine norepinephrine was 125. She said this was within normal range.
Standing norepinephrine (10 minutes into tilt-test) was 613. That was out of range.

That's like an increase by 5X's. The nurse said that is way way too high. Normal is doubling, so around 250. The doctor says that is likely why my heart rates are soo incredibly high when I am standing, yet what doesn't make sense is why does my BP not go up? Norepinephrine increases blood pressure.

I asked her about the epinephrine and she said the doctor had nothing to say about it. So I have to keep waiting for the report in the mail until I can actually SEE the results. Who knows how long that will be...3 weeks and counting...

Preliminary Catecholamine Results

2010-06-25T02:55:00.002-04:00

There's been some sort of hold up on my report from Cleveland Clinic...I asked the nurse about my catecholamine levels.

She said that my upright norepinephrine levels were high at 613.
She also said my epinephrine levels were below detectable limits <10.

Not sure what all that means right now and I'm not going to come to any conclusions until I see them for myself.

In crappy news, the floaters in my eyes have been terrible. I hate to even call them floaters because they are not dark spots. They are very bright bursts of lights that are either dark (on light objects) or bright (on dark objects). Very very similar to an after image. .They are very distracting and are in the center of my vision...

NutrEval Results Are In

2010-06-24T21:00:00.009-04:00

Here are the results! I finally figured out privacy options on photobucket, so here's a link to the album with the NutrEval results. The guest password is birdladyblog to gain access! No offense but I didn't want any of you rummaging through my personal album, so everything is locked down now. haha!!

The results are QUITE extensive. My urinary MMA, Formiminoglutamic acid and Sarcosine are all elevated, which according to wikipedia/google are indicative of a B12, B6 and B9 deficiency. I guess this wouldn't be such a big deal if I haven't already been taking 1000mcg of Methyl B12 and Folate (B9) on a near daily basis!

There are a few amino acids on the list that have me really wondering what is going on.

I have the following elevated:
a-Ketoglutaric Acid (AKG)
Leucine
Isoleucine
Sarcosine
Formiminoglutamic Acid
B-Aminoisobutyric Acid
Taurine
Methylmalonic Acid
Tryptophan
Cysteine
Glutamic Acid
Proline
Arachiodonic Acid
Docosatetraenoic Acid (DTA)

Most of the things online only talk about if your levels are low...That doesn't help me much! haha

I'm on my own to interpret this test! More to come. I'm too tired to write a whole bunch up right now.

Interesting Development Regarding Antibiotics

2010-06-20T02:36:00.003-04:00

I thought I'd bring my idea of an antibiotic helping my POTS symptoms to the dinet.org forum. This is a website dedicated to dysautonomic function. Apparently I am not the only one who has experienced this temporary relief of symptoms while on an antibiotic. One member suggests it could be a side effect of the actual meds, but I have to wonder if there is more to this!

My POTS did start around the same time when I contracted Epstein Barr Virus from some unknown origin. I wasn't dating anyone at the time (that I can remember), which is supposedly the "kissing" sickness.

Perhaps I have neglected this aspect of my problems. I didn't go on this antibiotic thinking I'd feel better. I just wanted to get rid of this darn infection so bad.

I don't know what to think about all of this. If you'd like to follow the thread on dinet you can find it here.

Check this out

2010-06-18T16:00:00.001-04:00

This is kind of weird and I don't like to jump to conclusions too fast. First off I am not CURED or anything like that. However, these past few days I've been feeling better. Now I couldn't figure out anything that I had changed to make me feel any better. Hydrocortisone dose is the same, florinef is the same, salt intake the same. I haven't changed any supplements or anything like that at all. So what is it that IS different...

A few days ago I got a terrible bladder infection. It literally came out of no where. One minute was feeling great, next I was in terrible pain, having to pee every 5 minutes and I was actually peeing out BLOOD. My urine was red red with blood clots...YIKES. For the past few days I've been on antibiotics AND I've been feeling better! WOW!!

I really have no idea what that means, but it is certainly interesting. Yesterday I rode nearly 2 miles on my recumbent bike and then we went for about a mile walk. I had my usual fatigue, but my heart wasn't that bad at all. Maybe I am just having a good few days and it is coincidental.

Who knows but I will definitely take it.

Things I Do To Stay Cool

2010-06-12T17:03:00.003-04:00

It's pretty hot here in western PA today. Right now it says it's 81 with 66% humidity. The humidity has finally kicked in this year, which makes getting around pretty darn frustrating. Since I have medical conditions that are worsened by the heat, I've learned ways to cope and keep cool.

1) Water, water
I always try to have some sort of drink on hand. The problem with just drinking water with POTS or adrenal insufficiency, is that you'll actually mess up your electrolytes even more. With my water, I also take Thermotabs which is a sodium chloride tablet. This helps me to get fluids without bringing my sodium levels down too low.

2) Wear as little clothing as possible
I know this sounds like dumb tip, but it does help to strip down to bare minimums. During the summer, I'm usually wearing my bikini top and shorts.

3) Wet towels
If you are really really hot and can't seem to cool down, then placing a cold wet towel/rag on the back of your neck really works wonders. You'll have to get new cold water often though!

4) Cooling Vests
I do not own one of these, but I've heard they are absolutely amazing. There are several websites that sell vests which are meant to hold ice packs. The ice packs last a few hours and can be refrozen over and over again. Some people on dinet.org say they make the summer much more enjoyable for them as they can do things they wouldn't normally be able to do.

5) Invest in a fan/air conditioner
We do not have whole house air conditioning, which is probably a little unbelievable for some of you. Our house is old and does not have the duct work available, so we are forced to use the window units. It's nice to keep at least 1 room in the house as the "sanctuary room" that I can run to when I am getting really overheated. If humidity isn't a problem where you live, then a fan or swampcooler may work really well for you too.

6) Dip in a pool or lake
If you own a pool or have a neighbor with a pool, this is always a really good option. Getting into a cool, swimming pool can feel absolutely amazing when it's hot outside. If you aren't lucky enough to have a pool nearby, then the local lake will work too! I'm not much of a "beach" person, but this year I think I might try out the swimming area at a lake near my house. It's better than suffering in the heat.

Always Gather Your Medical Records As You Go

2010-06-11T13:52:00.003-04:00

I've been on the phone with various doctor's offices in the past few days and this entire experience has made me realize how important it is to gather your medical records AS YOU GO. My pediatrician said that '84 birthdays have been destroyed and that my next best bet was to call the doctor's office I transferred to after them. Well that office has NO idea whether those records are there or not unless they pull them from storage. Pulling them from storage involves a fee, about 2 weeks of time and who knows what other hassles.

If I ever have children, I'll be sure to keep all of their medical records on file for them. That way when they get older, I'll be able to hand them over to them after high school for future reference and they won't have to go through all of this.

You never know when you'll need to look through you or your child's records. As a parent you'll be more aware of any trends that are occurring with blood work too. We tend to listen to our doctors when they say things are normal without ever seeing labs. If we gather our labs, then we can become our own advocates and avoid suffering with conditions for many many years.

NutrEval Finally DONE!

2010-06-08T15:12:00.004-04:00

I've had this kit for so many months, but finally got around to getting the NutrEval test done. The test is soo convoluted and it requires a lab or hospital to take 4 vials of blood, spin them down and then transfer cells and plasma into separate tubes. No one wanted to do it for me. Labcorp and Quest diagnostics were worthless. There was 1 lady who said she'd do it for me at Quest, but she couldn't guarantee if she wasn't working that the lady who was would. Well that does me NO good because I have to take urine the morning of too.

I found a local hospital (about 45 minutes away) would do it for me for a mere $7 charge. So we traveled up north and got it done. It was still a disaster...The lady seemed confused and I just told her to follow the directions and I'll take the blood and vials with me. We got everything and I called Fed-Ex to come pick it up. I'm just waiting for them now.

This test is very comprehensive. So much so that I will have to do a lot of research in order to interpret the results! Here's a sample report in PDF I'll expect to get from them. I am mostly interested in the nutrient, element and catecholamine information.

Tomorrow I may call Cleveland Clinic to see if they have the results of the catecholamines yet.

Edit: FedEx just came and it's gone!

Update:
Here are my results to the NutrEval test.
If you would like more in-depth information on what my results showed, then read this post.

Cooking With POTS

2010-06-05T18:38:00.003-04:00

This isn't about cooking with cooking pots, but with POTS (Postural orthostatic tachycardia syndrome). I thought this would be a fun considering the lovely pun! (hehe I rhymed)

Cooking with POTS is about as difficult for me as what a healthy person would equate to running 5 miles. Getting the pots out of the cabinets takes so much effort. GOD forbid something is still dirty from the last meal and I have to rewash it. I slowly stand up from the squatting position and walk over to the sink to fill it with water. Once that pot gets heavy, my arms just want to stop holding it because my heart doesn't appreciate this extra effort, so I rest it on the metal lip of the sink. Phew. That makes it a little easier.

I walk over to the refrigerator and grab some frozen vegetables and/or rice. These are 2 easy side dishes for me. The amount of required standing is minimal, so it's not soo bad. Still during this entire time my heart rates are 135+. I dump the rice or veggies into the pot and set it down on the stove. Almost there...phew!

Now I got to get the main dish ready! Oh no. This is normally when I really start to feel the "burn"....Grabbing another heavy dish out of the lower cabinet is tough. Going from that squatting position to standing again is terrifying. Now I got to walk over the refrigerator, get the chicken out of the refrigerator and prep it. I'm not that creative when it comes to food dishes, but I always make sure I put a lot of salt on my foods!

By the time I wrap aluminum foil over the dish, I need to get out of the kitchen and sit down.

On really bad days I just can't even do it. I have to ask my husband to cook because I'm soo tachycardic.

This might sound weird, but if I were a fainter, then people could SEE I'm suffering. "oh wow this girl isn't feeling so well, she fainted". But nope, I don't faint so as long as I look okay people think I must feel okay. I can certainly tell you that is not the case. I'm a stubborn person, so I just keep going until it gets soo difficult.

Since we are gluten free, egg free and we watch the ingredients in our foods very carefully, we cannot order out EVER. We cannot eat out EVER. I have to make every single meal in this house and it's tough some days. I'm not complaining about making the food, I just know that even normal mom's and housewives depend on McDonalds, Pizza Hut or their local Chinese restaurant at least a few times a week and I don't have that option! I really wish I could order a Made to Order sub at the gas station down the road...Nope can't do that. No matter how bad I feel someone in this house has to cook and it's my responsibility!

On Tuesday or Wednesday, we are getting the blood drawn for the NutrEval test, which will test A TON of different nutrients. I am hoping it finds something really wrong so I can start supplementing with it. Maybe this is just a rare nutrient deficiency and I'll get better!

The Trip to Cleveland Clinic

2010-06-04T19:50:00.003-04:00

The drive there was a lot worse than I was anticipating. I don't remember the drive to Cleveland being such a problem, but it was awful. Our GPS told us to go over a closed a bridge, make lefts where we were not able to (divided highway) and was generally wrong most of the trip.

We got there and thought I was going to have a panic attack from all the stress of trying to find the entrance to the parking garage. Things were horribly signed and the one way roads and inability to turn around ANYWAY made it extremely stressful and frustrating. They really need to make the signs larger and closer to the road so drivers can see them ! I had to pop a 15mg HC stress dose because I felt like I was going to lose it in the parking garage. That snapped me out of it!

I got in there and the nurse rubbed me the wrong way. She was a weird one. I was asked very specific questions about my "first episode", but when I tried to explain my point further, I was rudely interrupted. I brought in all of the requested labs (holter reports, ECG's, echos etc) and they didn't even seem to care! I don't know why I was even told to bring them in the first place. When I was trying to explain to the nurse my history, I felt like I was being interrogated by an enemy soldier. She was second guessing me, telling me there's no way I could possibly be feeling that way. When I told her that my heart rates hit 160 on a regular basis, she had the nerve to say "Well you walked the whole way back to the exam room, got weighed and you seemed fine". I told her very sternly that my heart was racing the ENTIRE time. Once again she just did not believe me at all. I was getting pretty ticked off the longer the nurse was in the room. She down played every single thing I would say.

Once the doctor got into the room, the exact same thing happened. She told me that everything I brought in today would need scanned into their computer system. Nothing is done on paper. Ok...so why was I told to bring all of this in? I would have happily emailed it to whoever takes care of that stuff.

The 2nd round of interrogation began. I don't know who was worse, the nurse or the doctor. For some unknown reason they focused so much attention to my "first episode" and didn't want to hear much about anything else.

My first episode was during summer band camp in 2000. I told her that it was very hot outside and I immediately felt weak, heavy, lightheaded and overheated. She said, well if this happened as soon as you walked outside, then you were probably not dehydrated. I told her yeah that's what I thought too. She asked me if I sought medical treatment or went to the ER and I told her no. I just sucked it up and went about my marching. No one else was having these problems.

Learning the marching formations, bending down and holding my arms up to play was awful. She said that it seemed pretty unlikely that I could finish 2 weeks of marching and do all of this if my symptoms were as bad as I described. I told her not to underestimate determination...LOL I'm a pretty stubborn person.

Eventually we got to more recent history where it was first discovered in 2007 that I was having periods of tachycardia. I told her no one ever took me seriously, which is ironic because THEY WEREN'T TAKING ME SERIOUSLY! I told her I was diagnosed with adrenal insufficiency, b12 deficiency, alopecia areata. She didn't even care about the AI.

After the interrogation, she listened to my heart and told me that she'd like to do a tilt test. She explained how they do it at Cleveland Clinic which was much different than what I had seen online. They first take 3 minutes of control heart rates/BP's, then tilt you for 2 minutes at 30 degrees, then tilt you for 2 minutes at 45 degrees. After that they tilt you for up to 45 minutes at 70 degrees. I told her that I wanted to have my catecholamine levels tested with this test, so she added that on.

I went back and was strapped down. They first placed the IV in my arm and I had to rest for 30 minutes to get the supine catecholamine levels. I was glad to see that they did this right. After 30 minutes, they couldn't get any blood out of my vein since I was lying down! I have no idea what they ended up doing, but it worked. I just hope the levels weren't higher than normal because I was a little freaked out that they couldn't get blood...

They took 3 minutes of control HR's/BP's and then it began. If you've never had a tilt test done, it's an experience no one can possibly explain properly to give you the sense of how miserable it feels. As they started tilting me up, I could just feel my body go..OH NO! NOT AGAIN! haha

Immediately my HR's began to climb. Once they put me up the full way to 70 degrees, it was bad. First reading was 119 and that's the lowest HR I had during the entire test. I got all the way up to around 150 and stayed there for the entire test. The nice techs/nurses doing my TTT took down any comments or symptoms I was having during the test and it is interesting. At minute 6 I told her I was having butterflies in my stomach. At minute 14, I had that same feeling. Then at minute 15, I started to sweat and felt really hot. I had them pull the sheet down off of me. In that room, it was FREEZING beforehand so obviously my body was responding to something. Minute 16 I told the lady this is very typical of how I feel and my heart rates won't be going down until they lay me back down. Guess what? I was right! My HR's continued to stay steady until they laid me back down at minute 45.

Once they tilted me back down, they immediately went from 150 to 75. I had major heart palpitations, PVC's, couplets, PACs. It felt awful. It was awesome to see they were captured on the EKG!

During the tilt-test that rude nurse came in at some point (I can't remember exactly when, but my HR's were into the 150's) and she was like..WOW you were RIGHT! Oh my goodness!!! Your heart rates really do get that high!! That's incredible.... Uh. wow thanks! I'm glad that I could prove you wrong jerk face. Do you think I would be lying about it? Taking your pulse isn't exactly rocket science with a freaking heart rate watch!

After that test, everyone treated me completely different. The weird attitudes were gone. They knew that I was seriously messed up. Dr. J (another cardiologist in that department) came in and said you have severe dysautonomia or maybe I should just say very marked dysautonomia. I think he was afraid to say severe, but it came out any way haha. Then Dr. F said practically the same thing as he did but in nicer bedside manner.

Overall I am happy that my heart cooperated! lol

My one complaint about Cleveland Clinic is that they judged me by the way I looked and not by what I was telling them. I look pretty healthy, I think.
But inside, my body is screaming for help. I told them that I'm a pretty strong willed person and I'm here now (after 10 years) because I need to control symptoms. It's getting to be too much for me and it's affecting my every day life. Even the winter was bad this year (before beta blockers), so that tells me I'm just getting worse and worse. If I can't get a break from this even in colder temperatures, then it's getting very serious.

On Monday I have to call them to schedule a few more autonomic tests. I'm getting the QSART testing, valsalvar maneuver and heart mapping done. I'm not completely sure what is all entailed, but I know that it doesn't involve any dyes or radioactive injections. I told her I wanted to avoid those for now. She was very understanding.

I'm not happy that they were treating me like crap when I first got there, but I'm glad they came around when they actually saw what I was going through. I feel like I had to prove myself to them!

Here are the vitals taken during my TTT. You can see how crazy my HR's go despite my blood pressure keeping up until the very end of the test. I think a small dose of HC would have made my BP's come back up a bit toward the end. I was feeling pretty exhausted at the end and immediately took 5 when I got down off the table. I had been due for a dose in the MIDDLE OF MY TEST!!

Stage----BP-----HR
C-01----101/61 74
C-02----105/56 72
C-03----105/61 74
C-Mean-104/59 73
30-01---114/66 89
30-02---109/61 88
45-01---106/61 103
45-02---108/68 106
70-01---115/71 119
70-02---114/64 123
70-03---114/67 126
70-04---106/63 125
70-05---108/59 133
70-06---104/60 133
70-07----99/64 135
70-08---107/63 125
70-09---108/64 135
70-10---107/60 133
70-11---104/68 135
70-12---101/66 133
70-13---107/62 140
70-14---103/63 140
70-15---121/74 145
70-16---106/61 145
70-17---109/66 142
70-18---127/81 150
70-19---107/74 148
70-20---116/71 145
70-21---121/68 140
70-22---101/61 140
70-23---103/67 148
70-24---114/54 153
70-25---107/66 148
70-26---121/49 142
70-27---108/63 140
70-28---101/46 140
70-29----88/65 148
70-30----98/53 145
70-31---102/69 145
70-32----90/65 140
70-33----99/50 148
70-34---101/69 148
70-35---100/57 150
70-36---100/55 150
70-37---101/66 148
70-38----95/67 145
70-39----94/57 150
70-40----88/64 148
70-41----96/48 148
70-42----93/48 153
70-43----92/69 150
70-44---103/55 150
70-45----95/51 150
Rec-01--126/62 77 I was having major heart palps. PVC's with couplets
Rec-02--114/59 75 1' Marked sinus arrhythmia was noted
Rec-03--110/57 84 More palps
Rec-04--107/55 83
Rec-05--107/53 83

Mentally Preparing Myself for Cleveland Clinic

2010-05-24T23:30:00.003-04:00

I called CC today to just get some more information on what I'll need to do. It looks like I might be needed more than 1 day, so we are going to have to make some arrangements.

I know that my adrenal insufficiency diagnosis is going to be a problem with this doctor. I told the assistant on the phone, that I wanted it noted on my chart that I have this so it's not a surprise/problem when I come in next week! It is with every single doctor I see.

"Yeah...I never had a stim test." As soon as those words come out of my mouth, the doctor will probably go into the "well it's not good to be on steroids if you don't need them and they'll make your bones crumble". I can already hear it now. So I'm wondering if this doctor is going to poo-poo it or want me to see one of their endos. HAHA If they are willing to put me on Dex and then do a stim test, I say bring it on! There's no way I can come off the HC as I'll likely go into crisis. I couldn't even lower down to 15mg! And...there's no way my adrenals haven't atrophied over the past year on HC. They won't likely stim whatsoever and then I'll have my nice Addison's diagnosis. I still have to wonder about my mildly elevated 17-OH progesterone. My hormone doctor immediately dismissed it, saying it wasn't "high enough". I'll never know. I've seen some info that late-onset CAH usually doesn't present itself with the crazy high levels until stimmed with synthetic ACTH.

Since it's warm out, I really need to be on florinef. It's killing me. My sodium is dropping (new blood work) and I just feel terrible as soon as the room heats up. Gotta love those salt cravings, which are nearly impossible for me to cure since I've stopped eating vinegars (olives, pickles) and all wheat (crackers, pretzels). I had one of those awful headaches yesterday and since I wasn't on any florinef, I'm thinking the headaches might actually be low aldosterone or low cortisol!!! I'm realizing that lowering my dose hasn't been so good (took a few weeks!), so I'm taking 20mg at the moment dosed 10, 5, 5 So..I'm going to try taking florinef again. Tomorrow I'm trying 1/4 tab of florinef and going from there. I'm not worried about it messing with my tilt test because it didn't before.

All I hope is that CC takes me seriously and runs tests. That's all. I don't need to walk out of there with a solution or even any new meds in my hand. I just want to get enough testing done to determine the type of POTS I have. Is this a mitochondrial disorder? Genetic disorder? Blood pooling in my limbs? High catecholamine levels? If I can get some answers to those questions, then I'll be satisfied. I truly think I have something WRONG with my body. I've been trying to do some leg exercises lately. Oh my gosh, it's soo awful for me. Today I woke up feeling pretty damn good with no headache. Then I did a bunch of leg raises (while LYING DOWN) and my heart was likely 150+. Leg exercises are worse than arm exercises for me, which isn't supposed to happen...I don't get it anymore and I don't even try to get it.

Well that didn't work...

2010-05-18T03:43:00.004-04:00

Sometimes you have to take things away before you realize how much of an effect they were having.

I sincerely forgot to take my beta blocker a few days ago. Well I didn't notice any problems, so I thought I'd "forget" the next day. I went 2 days without any problems whatsoever. My heart rates have been high since it's warmer out now, so having high heart rates wasn't alarming to me. Today, I purposely did not take the beta blocker. I didn't think anything of it and was going about my day. I noticed my heart was beating REALLY weird. I thought it was odd, so I started to feel my pulse and I could actually feel the skipping beats. I've never ever in my entire life have felt my heart do what it was doing today. It scared the living &%#^ out of me.

I realized that I needed to take the beta blocker and see if it got my heart beating back on the right track. It was all over the place. It would go really fast for 4 beats, then slam into my throat really slow, speed back up and rinse, repeat. All of this was happening as I was trying to find a new pair of pants to buy! haha I was sweating in the dressing room and just felt soo uncomfortable and even nauseous. It took 45 minutes for the beta blocker to kick in and then all of those crazy beats disappeared...completely. I have no idea what happened to me today, but I was ready to go to the ER. I didn't even think to take my BP today. /SIGH

Going down to 15mg of HC was disastrous. It took me 1 day to realize that was a bad bad bad idea, so I'm back up to 17.5mg. I seem to do well here for now.

In 2 weeks I am going to Cleveland Clinic. I have to get all the paperwork (labs) ready. I was trying to be off the beta blockers for the TTT, but I'm not sure I can even do that...

Lowering my HC

2010-05-14T03:30:00.002-04:00

This is one aspect of my treatment that I've never changed, so I've decided to start slowly wean down on the HC. Originally I was on 30mg of HC and that was way too much for me. Then I went down to 25, 20 and now I've been on 17.5 for about 3-4 weeks.

Today is my first day at 15mg and I'll hold steady here for a few weeks to see how I am reacting to it. I want to be on the least amount of HC as physically possible.

Forced Myself

2010-05-06T00:28:00.002-04:00

I was not really feeling so well today, but I made myself go to the park and walk some. Heart rates were entirely too high for the level of activity I was doing, but it was nice to have the sun on my face. Afterward, I crashed. Just had to take a nap. The nap made me feel even worse (if that's possible LOL), but now I've recovered.

It's 12:30am and I only now feel good.

Today is a TERRIBLE POTS Day

2010-05-03T18:58:00.001-04:00

Today is just SOO awful. How the hell am I supposed to live like this? I just feel like bursting out in tears because my the youthful years of my life have been wasted. If I can feel this terrible at 26, then I'll likely be in a wheelchair at 40.

Main Problems/Symptoms

2010-05-03T03:05:00.002-04:00

I've decided to make a post that discusses what my continuing health problems are even though I've been on HC for nearly a year now! I'm also going to touch upon what has gotten better. Sometimes it's really easy to focus on the bad and I'm trying to get away from that negativity.

Symptoms that still linger:

Lowish BP, without lightheadedness
Anxiety
Fluid Retention
Rapid heart rate upon standing
Heat intolerance
Panic attacks set off by minor stressors
Shortness of breath

What's better:

Panic attacks are actually less frequent
Fatigue improved significantly
Able to get out of bed in the morning now!
Not sleeping 16 hours a day
Can partake in some activities (as long as my heart is stable)
Frequent urination and thirst decreased significantly
Sex drive is back! Woohoo!! ;-)

Most of my lingering symptoms, I would attribute to POTS. In my case, treating adrenal insufficiency DID NOT cure orthostatic issues. Because of that, I have to assume that not everyone WITH low BP and tachycardia upon standing even HAVE adrenal issues. Something else is going on that hasn't been uncovered.

Small Victories

2010-04-27T16:41:00.002-04:00

I went to the store today on my own. YAY! I didn't freak out or have any anxiety about it. Often times I only post the negative things that happen in my life, so I thought I'd throw in a good one!

My headaches are gone, so I have to assume it was the florinef. I'm bummed about it, but at least I feel better now.

My weight has been up and down. I lose/gain 5 pounds give or take from day to day! haha Very weird, but I've always been like that for as long as I can remember.

Today the sun is shining, so that helps. It's a little chilly and quite windy, but I'm happy. The cat grass is finally sprouting outside, so the kitties will have a treat in a few days.

Headaches

2010-04-24T02:30:00.003-04:00

I have been getting TERRIBLE headaches lately. They will come out of no where and I feel so awful. My husband thinks it's the stupid florinef. /sigh I'm not sure at the moment, but it's been like 5 days straight with it! It hurts on top of my head, but also behind my eyes. It's worse when I bend down or try to lift anything like my head is going to explode. I never got this when I was on the florinef before, so I don't know what to think. It is allergy season as everything is bloomed, but I never had any allergies before.

It just seems like I am always battling something.

Tomorrow I am watching my nephew and I'm already nervous about driving down there. Actually I'm not nervous about the drive. I'm nervous about being away from home. I am scared to go to places without my husband with me. I had a major panic attack the other day when I had a chiropractor appointment. My husband ended up driving me because my blood pressure was like 130/92 (crazy high for me), I was freaking out and just started crying.

Had A Good Day

2010-04-16T00:13:00.002-04:00

Today I had a good day and I don't know why. I hate that. If I had changed something to make myself feel good, then I'd be more excited. Oh well I'll take it.

I feel more puffy again though. The fluid retention is returning...

I've Been A Wreck

2010-04-13T13:36:00.004-04:00

I really don't know what is going on with me, but I haven't been doing too well. Basically here is how things have gone down.

1) Went on beta blockers a few months ago with huge, life-changing improvements.
2) Started gaining some weight, fluid retention.
3) Developed Chilblains on my toes.
4) Heat wave set me back with heat intolerance, rapid heart rate
5) Added in Florinef to see if that would help
6) Anxiety begins to set back in
7) Increase florinef to 1/2 tab to see if anything changes, Added in Rx potassium too.
8) Feeling jittery, shaky, "out of my mind" like I drank too many red bulls or espressos

That's where I'm at right now. I cannot for the life of me figure this out. What is happening? Did the florinef do something or am I just getting worse because I am just getting worse?

Today is my birthday and when I should be happy, I'm pissed off. I'm not any freaking better. Yesterday was one of my worst days in like 8 months. I was soo jittery and shaky. Nothing would calm that down and then the nausea set in later on in the day. HC didn't help it, so I just forced myself to eat. I really wish I could see what is wrong and then fix it.