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...