Thursday, December 15, 2011

Could I get your help? UJAM Singing Contest!

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.

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.

Wednesday, August 10, 2011

Goodbye:Taking a break

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.

Sunday, August 7, 2011

Round 7: DMPS Ends! Also Another Rant

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...

Tuesday, August 2, 2011

Stopping Beta 1,3D Glucan

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.

Monday, August 1, 2011

Round 7: DMPS Begins

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.

Thursday, July 28, 2011

Forgetting HC Doses

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.

Thursday, July 14, 2011

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

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...

Wednesday, July 13, 2011


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. :)

Thursday, July 7, 2011

Round 6: DMPS Ends

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.

Sunday, July 3, 2011

Heat Intolerance Is My Top POTS Symptom

There was an interesting post on 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.

/Rant on

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. Ugh! :( 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.

/Rant off

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 a few other posts I've made on this subject.
2012- Heat Intolerance: It's Too Darn Hot!
2011- Getting Through the Heat Intolerance

Saturday, July 2, 2011

Round 6: DMPS Begins

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.

Thursday, June 23, 2011

Hope: Keeping up with my Nephew!

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

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.

Sunday, June 19, 2011

Mercury Hives: What Can I Do?

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.

Friday, June 17, 2011

Update On Tooth

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

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...

Friday, June 10, 2011

People Are No Longer Open-Minded

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.

Wednesday, June 8, 2011

Round 5: DMPS Begins

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...

Sunday, May 29, 2011

No Longer Trying to Come Off HC

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.

Thursday, May 19, 2011

Stopping the DHEA For Now

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.

Saturday, May 14, 2011

Off the Prednisone

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.

Wednesday, April 27, 2011

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

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.

Sunday, April 24, 2011

Hives Got REAL Bad, REAL Quick

Hives from heavy metal chelation
Author's Edit Jan 2015: This post still gets hits from google, so I wanted to let everyone know who is reading this that I no longer chelate and completely gave up on it all after multiple episodes of dangerous hives.  

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.

Friday, April 22, 2011

Hives Are Not Fungal or Yeast

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.

Thursday, April 21, 2011

Round 4: DMPS Complete

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.

Wednesday, April 20, 2011

Rant About Hydrocortisone Use in Adrenal Fatigue Patients

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.

Sunday, April 17, 2011

Round 4: DMPS Begins

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.

Thursday, April 7, 2011

Hives Have Calmed Down

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.

Tuesday, April 5, 2011

Diflucan: Will It Stop This?

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 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.

Monday, April 4, 2011

And It Begins...Hives

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.

Friday, April 1, 2011

Round 3: DMPS Complete

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. 

Thursday, March 31, 2011

Lyme Disease Part 1: Another Scapegoat?

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...

Monday, March 28, 2011

Getting Through the Heat Intolerance

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  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

Friday, March 25, 2011

Finished Round 2 DMPS

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!

Tuesday, March 22, 2011

Round 2: DMPS and Humaworm

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. 

Saturday, March 19, 2011

Keratosis Pilaris

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

Thursday, March 17, 2011

Almost Completed First DMPS Round

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. 

Tuesday, March 15, 2011

Took My First DMPS Dose!

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!

Monday, March 14, 2011

Japan Nuclear Issues : Taking Iodine?

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.

Saturday, March 12, 2011

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

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.

Thursday, March 10, 2011

Ride My Bike Every Day

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.

Tuesday, March 8, 2011

Heading Back to Oral Surgeon

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*

Saturday, March 5, 2011

NutrEval Doctor Commentary

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.  :)