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.

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...

NO HIVES!

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

Round 6: DMPS Ends

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

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


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

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

Heat Intolerance Is My Top POTS Symptom

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

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

My top 5 symptoms are as followed:

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

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

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

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

/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

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.

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.

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.

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...

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.

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...

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.

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.

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.

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.

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.

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.

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.