I have NEVER been this ill- Please Please tell me it is heavy metal-detox reaction

[caledonia]

I would suggest stopping the chelation, waiting until all the symptoms clear, then restarting at a lower dose that you can tolerate. If the petechia clear, that would give a clue that they're related to the detox.

MSM = methyl sulfonyl methane

 

[Vegas]

This is the problem with high dose infrequent use of DMSA and other chelators

Your reaction demonstrates that you have both a very significant metal burden and poor excretion ability...and your cellular antioxidant defenses were overwhelmed. Intermittent, high doses of DMSA is not a suitable protocol. You will not get better doing this. Unfortunately the DMSA doesn't permanently bond to the metal ions. The big dosage of DMSA results in net excretion, but the relocation of mercury is far more damaging than the gains you get from slightly reducing your body burden. You have to do it right or not at all.

Xrunnner- I take 250mg 2 x a day. Other supps. Something called "Metalloclear" (zinc, aerial part, hops, reduced iso alpha-acids); Something called "Biomins" (calcium, iron, potassium iodine, zinc, magnesium asparate, selenium, copper)

I don't think I added that I am doing the 4 days on and 10days off for 3 mos. I will be ending my 3 mos. At end of May.
Do you still feel better? If yes, what symptoms have improved?

Cassandra

 

[Ian]

Most chelators are meant for short term exposure, not chronic long term exposure. Chelation for most people is simply the wrong thing to do, and is really quite dangerous to the body. If the mercury is bound to your calls, ripping it out can cause a lot of damage, it can also just move it so it's free to damage somewhere else in your body.

 

[Freddd]

Hello everyone! This is my 1st thread. Well here goes................

First, I will not go into details about the protocol my doctor prescribed-after getting lost in all of these threads/posts I see there are many ways to go about detox as theories and protocols wildly vary.

Generally - I am doing an oral chelation with DMSA to address lead and mercury. Starting end of Feb. I take the DMSA for 4 days on then 10 days off. When "off" I take extra supps. to support my system during the process.

After 2 days on full dose Rx I felt like I was coming unglued. Crying, anxious, overwhelmed, could not attend to simple tasks, confused etc. Doctor had me reduce dosage and add Charcoal 1hr. This helped these symptoms tremendously- I was able to inrease slowly to full dosage with only slight brain fogginess.

However, now physically I am worse. Specifically, (in order of most limiting first), 1) I have TERRIBLE PEM I am no longer able to so the smallest amt. of activity/exertion without becoming short of breath, heart rate skyrockets, I get mentally slow significant difficulty info. processing. 2) muscle and joint achiness 3) little cog./psych. Issues 4) pain/cramping lower sides-back ( think people are calling these liver or kidney symptoms) 5) vibration tingling sensation in legs 6) although not necessarily bothering me in terms of functioning- all my tiny red dots over torso have multiplied and spread up to chest area, underside of arms and legs-

The last one more interesting than troublesome. The others- well they simply terrify me. Could not walk the length of a few gates in airport husband had to get wheelchair me and a shower is planned for at least 2 days.

Could this be simply a reaction to the detox as opposed to indicating just an overall worsening?

I am DESPARATE to hear it is heavy metal detox related-but only if it is true..

Cassandra

Hi Cassandra,

it sounds like you are have rapidly worsening neuro-muscular and neurological methylb12 and methyfolate deficiency symptoms.

 

[Cassandra68]

Thank you Ian-I had not heard that before but it makes a lot of sense.

 

[Cassandra68]

Fredd- are methylb12 and methyfolate deficiency related to CFS? I am not familiar with these.

 

[Cassandra68]

Thank you everyone for your supportive words and excellent information. I plan on talking to my MD about this and the Cutler protocol. Warmest regards,, Cassandra

 

[Cassandra68]

Nanonug - Yes the red dots started on my abdomen. I saw an acupuncturist a few yrs. ago who though the dots indicated stress on my liver.

 

[Freddd]

Fredd- are methylb12 and methyfolate deficiency related to CFS? I am not familiar with these.

Hi Cassandra,

YES, without a doubt. There isn't a CFS symptom that isn't also a methylfolate, mb12 or adb12 deficiency symptom. CFS can be largely healed in a year. As lack of these things can cause a breakdown in the methylation reactions in the body which is one aspect many focus upon. However, it is the adb12 that generates ATP in the mitochondria and whose lack can casue total fatigue, all sorts of muscle and neurological pain and so on. I cured myself of CFS and FMS and many more symptoms starting 9 years ago.

Glutathione and NAC that are both said to cause "detox" are actually casuing severe folate and if continued, b12 deficiencies and even brain and/or cord damage from these induced deficiencies.

 

[nanonug]

Yes the red dots started on my abdomen.

I think there is a good chance you have some kind of infection or overgrowth of opportunistic bacteria in your gut. I am saying this because I have those red dots too and I have an overgrowth of Morganella morganii in my gut. I had this diagnosed using the Metametrix GI Effects Complete Profile.

 

[Catseye]

Hello everyone! This is my 1st thread. Well here goes................

First, I will not go into details about the protocol my doctor prescribed-after getting lost in all of these threads/posts I see there are many ways to go about detox as theories and protocols wildly vary.

Generally - I am doing an oral chelation with DMSA to address lead and mercury. Starting end of Feb. I take the DMSA for 4 days on then 10 days off. When "off" I take extra supps. to support my system during the process.

After 2 days on full dose Rx I felt like I was coming unglued. Crying, anxious, overwhelmed, could not attend to simple tasks, confused etc. Doctor had me reduce dosage and add Charcoal 1hr. This helped these symptoms tremendously- I was able to inrease slowly to full dosage with only slight brain fogginess.

However, now physically I am worse. Specifically, (in order of most limiting first), 1) I have TERRIBLE PEM I am no longer able to so the smallest amt. of activity/exertion without becoming short of breath, heart rate skyrockets, I get mentally slow significant difficulty info. processing. 2) muscle and joint achiness 3) little cog./psych. Issues 4) pain/cramping lower sides-back ( think people are calling these liver or kidney symptoms) 5) vibration tingling sensation in legs 6) although not necessarily bothering me in terms of functioning- all my tiny red dots over torso have multiplied and spread up to chest area, underside of arms and legs-

The last one more interesting than troublesome. The others- well they simply terrify me. Could not walk the length of a few gates in airport husband had to get wheelchair me and a shower is planned for at least 2 days.

Could this be simply a reaction to the detox as opposed to indicating just an overall worsening?

I am DESPARATE to hear it is heavy metal detox related-but only if it is true..

Cassandra

Hi Cassandra,

I tried oral chelation several times with different protocols and it always went bad, with horrific symptoms. I am using a chelation doctor now who uses IVs. What I have found out from his 20+ years of experience is this: first you have to remove the majority of lead or it will prevent mercury from coming out, he uses EDTA IVs for this. Then, when lead is down to an acceptable level (which for me took about 45 sessions) , he uses DMPS IVs to remove mercury "from the neck down". Then, when that level of mercury is down to an acceptable level (did 12 sessions so far, waiting on my latest challenge test now) , he uses DMSA capsules to remove mercury from the brain. I've been at it for almost a whole year now. My adrenals got the best results from the DMPS. Just getting the lead out of the way didn't seem to do much for PEM or crashes, just somewhat, but the DMPS - WOW!!!

Incidentally, my doc said you'll never get all the lead out, it's too pervasive in our food and environment. What he recommends is that you come in every once in awhile for an EDTA session to make sure lead stays at a low level. He even does it a few times a year.

After everything I read on the internet, I was scared of the IV chelation at first. But it is easy to get through if you prepare properly - see my thread "tip for anyone using chelation and having a hard time". Simple things like liver support pills, the ACV/EVOO/lemon juice cocktail and drinking a lot of water during a session have made it quite tolerable. And it's a heckuva lot quicker than the oral way - you'll be on that for years.

Have you ever done a CDSA to make sure you don't have any gut issues? That could make your symptoms unbearable. If you have a local chelation doctor, you may want to consider it. They start you off with a low dose of EDTA and increase from there.

 

[Catseye]

Forgot to mention, you should probably try taking some liver support pills if you have any handy, that should relieve some of the strain on the liver. I remember feeling like I was dying when I tried the oral chelation. The liver support pills helped somewhat. Bupleurum Liver Cleanse and Milk Thistle Liver Cleanse are my 2 favorites, available at vitacost. Or you could try the lemon juice, apple cider vinegar, olive oil cocktail. Just mix one tablespoon of each, drink it down (it doesn't taste bad) and chase it down with some juice. You'll want the juice because the ACV burns a bit. Make sure it's decent ACV from the health food store and not like the crappy Heinz variety.

 

[Cassandra68]

Catseye- thank you for sharing your experiences. It is really helpful to hear all of the additional info. on oral chelation. I only had a few weeks left to complete the 3mos. Of oral chelation. Initially I thought I would stick it out in the hopes after feeling crappy I would feel better on the other end of this. But now thanks to all the information everyone has been so kind to share-I have abandoned the protocol. Sounds like if I try chelation again ..... In the VERY distant future I need to find a specialist. I did not realize there were chelation specialists.

Before you started chelayion had you already used other treatments to feel better, or is chelation the focus of your therapy? What is the DMPS? That is great it has helped your PEM!!!


Still feel pretty bad- do you think the liver support cocktail you mentioned will help me recover more quickly from the damage I have done? So much to sort out.......thank you again, Cassandra

 

[Cassandra68]

I think there is a good chance you have some kind of infection or overgrowth of opportunistic bacteria in your gut. I am saying this because I have those red dots too and I have an overgrowth of Morganella morganii in my gut. I had this diagnosed using the Metametrix GI Effects Complete Profile.

Nanonug- great idea I see my doc. next week I'll ask him about the test. Take care, Cassac

 

[Cassandra68]

This is the problem with high dose infrequent use of DMSA and other chelators

Your reaction demonstrates that you have both a very significant metal burden and poor excretion ability...and your cellular antioxidant defenses were overwhelmed. Intermittent, high doses of DMSA is not a suitable protocol. You will not get better doing this. Unfortunately the DMSA doesn't permanently bond to the metal ions. The big dosage of DMSA results in net excretion, but the relocation of mercury is far more damaging than the gains you get from slightly reducing your body burden. You have to do it right or not at all.

Vegas-thank you sooooooo much for explaining (in terms I understand) the physiological basis for my feeling like hell. My doc. is really great - well -intentioned and is trying to help me get better. Appears He just does not have the expertise for chelation and as a result he did not undertand my negative reaction did not subside after time went on. Sincerely, Cassandra

 

[Cassandra68]

Gu3vara- I hope you are feeling better. I think you are on to something asking to try oxygen. I plan on asking my doc. next week. Have you asked yours yet? Wouldn't it be great to find something that helped right about now? Keeping my fingers crossed for both of us! Cassandra

 

[Wayne]

The following is an edited post I did on this thread (Lead toxicity and DMSA). It's a thread similar to this one, and a number of posts give similar warnings about doing this kind of "detox". That word can sound relatively benign, but initiating major detox is not even close to being benign. It's is a MAJOR undertaking, fraught with many known and unknown dangers. If you haven't studied this subject for MANY hours, then you should probably hold off on doing this until you've done your homework. Failing to do so has the potential to dramatically (negatively) affect your health in a major way for the rest of your life (not to be overly melodramatic). If you're at all considering doing major detox, you may want to first read this heartbreaking story of a very healthy woman who literally became an invalid from following advice to undertake a "detox" regimine without proper preparation: Robin's Report

I originally posted the following in July, 2011

I believe various things should be done prior to starting something like this, such as acclimating the body to various types of clays (i.e., zeolite) that can absorb/adsorb toxicity. I believe clay foot baths (which I use) can be very effective (yet fairly gentle) in reducing heavy metal toxicity without the dangers of rapid heavy metal release. Why not gradually reduce our overall load before going with the "big guns"?

I know this is not a popular topic for many people, but I myself would never, ever consider doing DMSA chelation without knowing how to do a coffee enema (CE). Alternative cancer clinics rely heavily on CEs for rapid detoxification, as rapid cancer dieoff can be very dangerous as well (patients died in alternative cancer clinics because of rapid dieoff before CEs were instituted to relieve this toxicity). Other important rapid detoxification aides might include epsom salt baths, FIR saunas, etc. I'm just a big believer in being very prepared to help the body eliminate dangerous mobilized toxicity as quickly and efficiently as possible.

I don't know how accurate or up to date this might be, but a website devoted to some of the dangers of incorrectly using DMSA can be found at:

http://www.dmpsbackfire.com/default.shtml

I experienced some major mercury toxicity when I had some amalgams removed by a "holistic" dentist, who assured me he knew what he was doing. Well, he didn't. And I was so sick for a very long time afterwards. My own experience and everything I've read tells me heavy metal detoxification/chelation should be considered very seriously, and then be done very, very slowly, and very, very carefully.

Wayne

 

[Dreambirdie]

Most chelators are meant for short term exposure, not chronic long term exposure. Chelation for most people is simply the wrong thing to do, and is really quite dangerous to the body. If the mercury is bound to your calls, ripping it out can cause a lot of damage, it can also just move it so it's free to damage somewhere else in your body.

I agree. Chelation is very HARD on the body, especially if you're chronically ill. Most people with ME are much too ill to begin heavy metal detoxification.

I would address gut issues, adrenal issues, nutritional deficiencies first. And then, after you have built up a good reserve of energy, you can begin a methylation protocol, proceeding very slowly.

 

[caledonia]

I just wanted to clarify something for @Cassandra68

The reason we have these metals built up is due to reduced methylation capacity. It's usually a combination of genetics, plus environmental exposures. Once you have the metals in you, they will reduce methylation capacity further, which will reduce detoxification further. It's a vicious cycle.

When you do methylation treatment, the metals will start to come out. Gut bugs, such as candida, which many of us also have, also hold onto metals. Killing off the candida will also reduce metals. My suggestion would be to work on these two first.

Then if there are still some metals left over, you can do a special metal detox. Your body will be in much better shape to handle detox by that time.

So what Freddd was saying before about having a folate and B12 deficiency is all part of the same hypothesis. Taking folate and B12 (and some other co-factors) = methylation treatment.

Please watch the Methylation Made Easy videos linked in my signature for the basics of how this all fits together.

 

[Dreambirdie]

To add to what Caledonia said...

Addressing the gut is definitely a top priority. If you have a leaky gut, (from gut bugs and dysbiosis) you will be losing all the electrolytes that you need to keep brain and energy in balance.

Taking VERY SMALL DOSES of the methylation supps (B12 and folate) is the way to go for many people here. "Normal" doses are usually too much and can cause the body to release too many toxins at once, which can be overwhelming. I have heard there are some people here who take only 16 mcg of B12/day.