Monday, February 28, 2011

First Walk of the Season!

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!!

Friday, February 25, 2011

Amalgam Tattoo

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.

Wednesday, February 23, 2011

Feeling Rundown

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...

Monday, February 21, 2011

My Life's Health Timeline

I decided to go back and write even more specific details in my health timeline. Even though I consider my "onset" as the summer of 2000, there were signs something wasn't quite right as early as age 9.

4th Grade (1994)- I had a lot of anxiety issues. I would get panic attacks for no reason whatsoever. I was so fearful of everything. Most of my days were spent in the guidance counselor's office trying to sort out what was going on in my head. I still to this day have no idea what was going on. All I know is that I was terrified all the time. School was so scary for me, but it never had this much of affect on this until 4th grade.

6th Grade (1996)- I started to have the panic attacks again. I didn't want to go to school anymore. I'd cry every Sunday night and try to get out of going on Monday. There were a few times I just broke down and cried in class. My grandmother died unexpectedly this year, but I think I just used that as an excuse for my feelings. It was an easy out.

11th Grade (Summer 2000)- During marching band camp, I experienced severe heat intolerance for the first time. I nearly fainted, passed out every single day outside. The 'band moms' told me that I looked very pale, blue and I knew I felt better when I could sit down. 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 and felt awful. 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 also became anorexic right 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. They have always been very regular since with a few exceptions here and there. Because of my anorexia, all of my other symptoms were blamed on that, even though I told my doctors these symptoms started before. No one listened.

May 2001-Still very much anorexic and thin, I went to my ex boyfriend's prom at another high school. 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 Kennywood, which is a local amusement park. It was a very hot June day. I knew immediately upon getting on the school bus, 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 just 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 first and last time I have ever “fainted”. Looking back though I often wonder if this was my first adrenal crisis. I can't believe I was not taken to the hospital. Really quite shocking to me.

Fall/Winter 2001-This was my senior year of high school. It took all my effort and will power to make it from class to class. I knew when it came time to switch classes I'd have to suck it up and make it up the 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.  I had major issues dealing with any type of stress. I'd begin to shake, feel nauseous, extremely cold and terrified. My anxiety issues started to show up again. Despite all of these problems, I did very well in school.

Age 18-20 After high school, I decided to go to community college and work. 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... Since I worked and lived in air conditioning, my heat intolerance wasn't as noticeable. My job allowed me to sit down most of the day, so that was helpful too. I just knew if I had to stand for a long time or go outside for any length of time, I felt very sick.

Age 20-22 Things began to progress and I continue to get worse. My attempts to keep up were not working anymore and 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, keep hydrated and blamed everything on mitral valve prolapse.../sigh

I had quit my sitting job and was working at a retail store where I was required to stand my entire shift. There were no stools like at my other job.... After about a year of that, I just couldn't even go into work anymore and was calling off often. Standing at the counter, waiting on customers was almost impossible on some days. I'd feel soo ill and I would actually lay down on the ground in the jewelry department in between customers. Since we did 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 was forced to quit my job and haven't worked outside of the house ever since (6+ years now). Standing for long periods of time (like an 8 hour shift) is impossible.

A few months after quitting work, my sister found out she had a malignant brain tumor and I went into a dark depression for months. I did not want to eat, talk or even leave the house. Only after she was given a good prognosis, did I come out of my shell. This had such a huge affect on me as I thought I was going to lose my sister. My sister and I had been through A LOT because we shared a room our entire lives from age 6 until I moved out when I got married at 19. 

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!

I decided to start going down the "natural" doctor path. Mainstream docs were not helping me one bit. They didn't even want to talk to me. 

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 after taking potassium iodide. A dermatologist diagnosed it as alopecia areata. I had several “spots”. One was very large covering the entire left frontal area. The second spot was on the back of my head. These spots lasted for about a year and then cleared up after removing my amalgam fillings and begin chelating.

Around this time, I was also diagnosed with partial diabetes insipidus. I took dDAVP which helped alleviate the frequent urination, but did not help me with any of my other symptoms. A pituitary MRI with contrast was done and it was normal except for some issues with my sinuses.

Labwork showed low normal B12 levels. B12 injections helped with the numbness in my extremities.

December 2008 (Age 24)- While chelating, I started to develop hives and 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. I believe this was all from DMSA, but at the time I did not know this!

March 2009 (Age 24) I was finally diagnosed with adrenal insufficiency after a mildly elevated ACTH level. I began taking hydrocortisone and florinef, which immediately resolved a lot of the symptoms I had been suffering with for almost 7 years. Unfortunately the tachycardia upon standing was not resolved. I was told by my natural doctor that he wanted nothing to do with my heart issues and that I needed to see a cardiologist. Meanwhile, POTS was the entire reason why I saw him... Ugh!

Approx. June 2009- Allergy testing showed sensitivities to gluten, wheat, dairy, eggs, tomatoes, strawberries and yeast. For about a year I followed a strict diet that restricted all of these foods. I never noticed a difference at all. I watch my dairy intake since I am lactose intolerant. I stopped eating gluten free in 2013.

August 2009- (Age 25)- I saw a local EP who had 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, but in the meanwhile I was placed on midodrine. It made me feel worse and I discontinued it within 3 days. The side effects were unbearable. It made me feel very jittery, anxious, manic and I would have likely killed myself if I had stayed on the drug. It was that bad.

The results of my tilt-test were very conclusive and I certainly had POTS. It's important to note that for this TTT, I was taking Hydrocortisone, florinef, DDAVP and I was also hooked up to a Saline IV.

Since the midodrine failed, my doc had me try a low dose beta blocker (metoprolol ER) and that made a big difference. He was shocked to hear I had such positive effects with the beta blocker and inferred I likely had a problem with catecholamine levels. Yet he refused to test my catecholamine levels because "they cannot be accurately interpreted".  I would later find out this is just flat out wrong and my POTS doctor was really quite crappy. 

February 2010- Complications from the beta blocker started to creep up slowly. I started to feel a lot more fatigued throughout the day and I developed chilblains on my toes.

Unfortunately once the warmer weather came around, the beta blocker's positive effects were quickly fading away. The beta blocker did absolutely nothing to help with the heat intolerance problems and I was right back where I started. My standing heart rates were still way too high when I did any activity that requires standing, lifting or bending down.

June 2010- Another tilt-table test was performed at Cleveland Clinic with catecholamines. This test confirmed the POTS diagnosis, but also showed I have elevated norepinephrine levels upon standing.

After a poor experience dealing with Cleveland Clinic, I pretty much gave up on pursuing anything further with my health. I took a long break with my health and did not see a single doc for over a year.

December 2011-I became quite sick with what I would find out in the coming weeks was actually strep throat. Since I didn't realize I had strep, I did not go to the doctors and it was untreated. I developed erythema nodosum and arthritis from strep throat. It was a horrific few months of my life and do not know yet if there will be any long term effects from the strep.

June 2012- I'm still the same as I was in 2009-2010. Despite all of my research and trying different things nothing has really changed much over the years since going on hydrocortisone. Chelation helped briefly, but since I get severe side effects from it, I haven't gone back to doing it. I have nearly abandoned the whole idea which is why all the chelation stuff has been removed from my blog.

I no longer think there's anything I can do to fix myself. It's taken quite a few years and a lot of reflection to finally come to this conclusion.

October 2012- I was supernaturally healed of adrenal insufficiency and for the first time in many years was able to cold turkey come off of hydrocortisone. I went to a prayer meeting and was prayed for. I felt a warmth in my core. I didn't think anything of it and had forgotten to take my pills. Weeks went by and I still didn't need it. There is no other explanation except that God healed them that day when I got prayer!

March 2015- For the past 2.5 years I have 100% been following God and seeking Jesus for healing. I am no longer researching, doing treatment protocols or anything at all. If I am healed it will 100% be by the power of God. My weapon is now prayer and faith in Jesus name. Doctors and men failed me. Science and amateur research failed me. Now I look to the Creator, my Lord and Savior for life. I no longer live for myself, but for God. Everything I used to do, I no longer care about at all. This is the power of the Cross and a testimony to what the Holy Spirit can do in one's life.

So far from what I've seen, God has a better track record than any of the lead researchers and doctors at Vanderbilt, Cleveland Clinic or Mayo Clinic. That's something to think about. I know of at least 3 women who have been healed of POTS.

Don't allow the faults of man to smear the name of and/or ruin your relationship with God...Don't allow what someone else did to you, keep you from being saved and reconciled back to God. Doing so gives these people waaay to much power.

Chelation Round 16?

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

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

Thursday, February 17, 2011

An Interesting Website

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 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. 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...

Saturday, February 12, 2011

Who Is Really Recovering?

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.

Friday, February 11, 2011

The Rashes Have Begun

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.