Bad reaction to chelators

[cman89]

Now just have to figure out a schedule, would you guys say 3 days every week is too often? maybe 3 days every 10 days?

Either one is fine. Many sources mention taking as many days off as you were "on", maybe even more. I do three on, three or four off...

 

[Unim]

Yeah, the minimum you have to do is 64 hours solid, then break as long as you were on. Other than that it's up to how you feel.

I like 3.5 days, starting before bed and ending early in the morning. Night dosing just feels quicker to me. The bonus of weekly rounds is being able to remember what day it is.

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Just some random suggestions to help avoid goofed rounds:

You'll probably want to get a pill box for your doses in if you haven't already. Otherwise you will find yourself forgetting if you took a dose or not. I have some detachable ones I bought at Boots and I put in 12 hours worth at a time.

When taking doses, but especially at night, I suggest the following procedure assuming your alarm works this way (I use a countdown timer rather than a set alarm):
- Silence/'snooze' your alarm (Importantly it must reactivate after a short time)
- Put the pills in your mouth (Count with your tongue if you are taking more than one)
- Reset your alarm
- Swallow the pills

That way you can't reset the alarm before the pills are in your mouth, acting as a reminder if you fall asleep half way through. Countng in your mouth prevents missing dropped pills. It all needs to be foolproof because sometimes your brain just won't want to wake up.

Also I keep some food by the bed in case any pills get stuck in my throat. I use cucumber for some reason...

Staying on the theme of random suggestions, I also regret not measuring my progress in doses or hours, rather than just rounds. It's a bit more accurate and would have probably given me more miestones to aim at along the way.

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Finally, I think in another thread of yours I suggested the support supplements for chelation... I said to take zinc split throughout the day. Just wanted to clarify that this is wrong and zinc is once per day, but I can't edit that post anymore.

 

[Hip]

i've noticed in the past whenever I take a sulfur supplement like MSM, DMSA, ALA etc. I get a very sharp increace in brainfog, what i like to call the zombie effect, for about 4 hours. No supplement gives me quite the same reaction.

According to Dr Amy Yasko, individuals with the CBS C699T mutation may have problems with sulfur containing supplements and foods, although I have not seen any studies that verify this (or even polls on this forum).

It sounds like you may have mercury toxicity.

@caledonia, have you considered setting up a forum poll, asking whether ME/CFS patients who have high mercury levels (as measured by reliable tests) in their body also have problems with sulfur-containing supplements? That might help confirm (or refute) the theory that when there are high levels of mercury in the body, sulfur-containing supplements can cause problems (worsen symptoms) by mobilizing the mercury.

A poll could ask:
Have you been tested for mercury levels in your body, and if so, do you have sensitivity and a significant worsening of symptom when you take supplements or chelators containing sulfur (as a free thiol groups) such as: alpha lipoic acid, N-acetyl cysteine, MSM (methylsulfonylmethane), DMSO, DMSA, DMPS, bromelain, papain, chlorella, glutathione, methionine?

Then the poll could have four answers:
• My tests show HIGH mercury, and I am SENSITIVE to sulfur-containing supplements
• My tests show HIGH mercury, and I am NOT SENSITIVE to sulfur-containing supplements
• My tests show LOW OR NORMAL mercury, and I am SENSITIVE to sulfur-containing supplements
• My tests show LOW OR NORMAL mercury, and I am NOT SENSITIVE to sulfur-containing supplements

Reference: Sulfur food list - high & low thiol foods

 

[caledonia]

According to Dr Amy Yasko, individuals with the CBS C699T mutation may have problems with sulfur containing supplements and foods, although I have not seen any studies that verify this (or even polls on this forum).

@caledonia, have you considered setting up a forum poll, asking whether ME/CFS patients who have high mercury levels (as measured by reliable tests) in their body also have problems with sulfur-containing supplements? That might help confirm (or refute) the theory that when there are high levels of mercury in the body, sulfur-containing supplements can cause problems (worsen symptoms) by mobilizing the mercury.

A poll could ask:
Have you been tested for mercury levels in your body, and if so, do you have sensitivity and a significant worsening of symptom when you take supplements or chelators containing sulfur (as a free thiol groups) such as: alpha lipoic acid, N-acetyl cysteine, MSM (methylsulfonylmethane), DMSO, DMSA, DMPS, bromelain, papain, chlorella, glutathione, methionine?

Then the poll could have four answers:
• My tests show HIGH mercury, and I am SENSITIVE to sulfur-containing supplements
• My tests show HIGH mercury, and I am NOT SENSITIVE to sulfur-containing supplements
• My tests show LOW OR NORMAL mercury, and I am SENSITIVE to sulfur-containing supplements
• My tests show LOW OR NORMAL mercury, and I am NOT SENSITIVE to sulfur-containing supplements

Reference: Sulfur food list - high & low thiol foods

Don't need to - The information is from Cutler's book and it's also a rampant symptom on the various Cutler forums. Speaking of which, I believe there are many undiagnosed ME/CFS patients on those forums. The parallels with their symptoms to us is uncanny.

Proper testing for mercury is problematic. People get blood, urine, or hair tests and look at the level of the metals, see that mercury is low, and think they don't have it. You have to look for deranged mineral transport on a hair toxic and essential elements test. In a small percentage of cases, even if you don't have deranged mineral transport, you may still have mercury.

Some of the thiol issues may be due to mobilization of mercury (like from cilantro and chlorella which don't have enough thiol groups to hang onto mercury tightly enough to let it be excreted) or may be from mercury depleting molybdenum and thus causing SUOX not to function well. Or from using ALA, DMSA and DMPS incorrectly i. e. not within their half life which would also cause mobilization of mercury or other metals.

I don't think everyone with mercury has sulfur sensitivity. It may be that those with CBS and mercury would be more likely to have it. I don't know if CBS alone would be enough to cause it without the presence of mercury. That might make a more interesting survey.

But again, there would be the problem of people having the right testing to rule in or rule out mercury.

 

[Hip]

People get blood, urine, or hair tests and look at the level of the metals, see that mercury is low, and think they don't have it.

So you are saying that according to Cutler, if you have low mercury in your hair tests, you can still be high in mercury.

What about the converse, can you have high mercury on your tests, but actually have low mercury levels in your body? Or does having high mercury on your tests guarantee high mercury in your body?

You have to look for deranged mineral transport on a hair toxic and essential elements test. In a small percentage of cases, even if you don't have deranged mineral transport, you may still have mercury.

So according to Cutler, if you have low mercury in your hair tests, you may still have high levels of mercury in your body, if you exhibit what Cutler calls "deranged mineral transport"?

Looking at the chapters here on deranged mineral transport in Andrew Cutler's book, he states that "mercury interferes with the process by which your body moves minerals around and regulates their concentrations." However, Cutler does not provide any references to studies or other literature to back up that statement. It is normal in scientific texts at least to provide references to back up the statements that you make.

I tried a Google search on PubMed, to try to find studies that showed mercury impairs the transport of minerals, but found little. Here are two studies I did find:

Inhibition of calcium transport by mercury salts in rat cerebellum and cerebral cortex in vitro
Effects of gallium and mercury ions on transport systems

However, even if mercury can affect transport of minerals, you would also need to demonstrate that mercury will affect and disturb the mineral levels found in hair tests. I can find no references in Cutler's book about this.

Would you know where Cutler got this idea that abnormal, disrupted mineral results in your hair analysis (as defined by his "counting rules") are an indication of high levels of mercury in the body?



There is an interview with Andy Cutler here. A good summary page of the Andy Cutler chelator protocol is here.

In both links it explains why it is crucial to take the chelators ALA and DMSA every 3 or 4 hours throughout the day, and not every 8 hours; the 8 hour scheme can redistribute mercury and make you very ill (it is all to do with the half life of ALA and DMSA).

 

[Unim]

Regarding sulfur sensitivity and chelation, one example here I can think of is @Johnmac. If I remember correctly he was in the final stages of chelation before coming here. Although he found it helpful, he actually developed sulfur sensitivity from chelation. I think his is a pretty unusual case though? Also @stridor mentions his sulfur sensitivity improved. (Hopefully I haven't misquoted you guys)

I think Cutler estimates about half of people with mercury problems develop sulfur sensitivity. You can search the archives at Onibasu.com adding the term +from:andy to get mostly Cutler's posts. Maybe not useful

Edit: So I couldn't find a great deal about the origins of the mineral derangement observation. I get the impression it was just discovered after analysing numerous sick people's hair tests, but there may be some relevant studies to be found. I have asked on the Facebook group, hopefully they can give a more helpful answer.

 

[caledonia]

So you are saying that according to Cutler, if you have low mercury in your hair tests, you can still be high in mercury.

What about the converse, can you have high mercury on your tests, but actually have low mercury levels in your body? Or does having high mercury on your tests guarantee high mercury in your body?

I think if it's high, it's high.

So according to Cutler, if you have low mercury in your hair tests, you may still have high levels of mercury in your body, if you exhibit what Cutler calls "deranged mineral transport"?

Yes

Looking at the chapters here on deranged mineral transport in Andrew Cutler's book, he states that "mercury interferes with the process by which your body moves minerals around and regulates their concentrations." However, Cutler does not provide any references to studies or other literature to back up that statement. It is normal in scientific texts at least to provide references to back up the statements that you make.

I tried a Google search on PubMed, to try to find studies that showed mercury impairs the transport of minerals, but found little. Here are two studies I did find:

Inhibition of calcium transport by mercury salts in rat cerebellum and cerebral cortex in vitro
Effects of gallium and mercury ions on transport systems

However, even if mercury can affect transport of minerals, you would also need to demonstrate that mercury will affect and disturb the mineral levels found in hair tests. I can find no references in Cutler's book about this.

Would you know where Cutler got this idea that abnormal, disrupted mineral results in your hair analysis (as defined by his "counting rules") are an indication of high levels of mercury in the body?

I'm guessing like Unim that it was based on observations of hundreds of tests, but best to ask on one of the Cutler forums for more info.

I do know that mercury impairs certain enzymes such as MTR, CBS and more. You can see this on methylation diagrams which show epigenetics affecting the enzymes (same name and location as the SNPs). The enzymes require vitamins and minerals as cofactors to run properly. This is just basic biochemistry.

 

[Hip]

@caledonia @Unim
Had you previously come across what Cutler says about taking ALA and DMSA every 8 hours causing patients to become very ill? It relates to the half life of these chelators, which is 3 or 4 hours for ALA, and 4 hours for DMSA.

My understanding of this issue (and I may or may not be correct) is that if you take a dose of ALA and/or DMSA, it will chelate mercury, but if you wait 8 hours before re-dosing, that is two half lives of these compounds, meaning that after 8 hours, 75% of the ALA and DMSA will have been eliminated from your body.

Presumably this may mean that the ALA and DMSA could dump a lot of the mercury they are carrying in the body, as ALA and DMSA get eliminated from the body.

But if you take ALA and DMSA every 3 or 4 hours, then this is only one half life, meaning that after 3 or 4 hours, you still have 50% of the ALA and DMSA in your body by the time you take the next dose of ALA and DMSA. So then there is less chance of the ALA and DMSA dumping the mercury in your body, because levels of ALA and DMSA in the body remain quite high all the time, never less than 50%.


This seems pretty important, but I had not read it before.

 

[caledonia]

@caledonia @Unim
Had you previously come across what Cutler says about taking ALA and DMSA every 8 hours causing patients to become very ill? It relates to the half life of these chelators, which is 3 or 4 hours for ALA, and 4 hours for DMSA.

My understanding of this issue (and I may or may not be correct) is that if you take a dose of ALA and/or DMSA, it will chelate mercury, but if you wait 8 hours before re-dosing, that is two half lives of these compounds, meaning that after 8 hours, 75% of the ALA and DMSA will have been eliminated from your body.

Presumably this may mean that the ALA and DMSA could dump a lot of the mercury they are carrying in the body, as ALA and DMSA get eliminated from the body.

But if you take ALA and DMSA every 3 or 4 hours, then this is only one half life, meaning that after 3 or 4 hours, you still have 50% of the ALA and DMSA in your body by the time you take the next dose of ALA and DMSA. So then there is less chance of the ALA and DMSA dumping the mercury in your body, because levels of ALA and DMSA in the body remain quite high all the time, never less than 50%.


This seems pretty important, but I had not read it before.

Yes. This is one of the basics of the protocol and why it's called "frequent dose chelation".

I have personal experience with this. I'm a fast oxidizer and need to dose the ALA every 2 hours day and night or I get redistribution and feel worse. Lucky me.

You will, of course, get some dumping from the last dose at the end of the round but it will be minimal compared to getting dumping from multiple doses.

 

[Johnmac]

Yep, frequent dosing is pretty important for many, including myself.

I don't think Cutler has a full suite of references to back his method, nor has he published on the subject in the literature to my knowledge. However he has analysed thousands of hair tests, & fixed many people, so people tend to trust him.

Yes @Unim, I had the worst sulphur reactions of anyone I've heard of. I was largely clear of them, then broke a CFS lightbulb which seemed to partly re-poison me. The sulphur symptoms returned whenever I chelated after that. I'm steeling myself to finally finish my chelation campaign soon.

 

[Hip]

However he has analysed thousands of hair tests, & fixed many people, so people tend to trust him.

Does Cutler publish data (even informally) on the patients he has helped? For example, information on the disease the patient has, their hair mercury level (or mineral derangement) before chelation, how much their hair mercury level went down after chelation treatment, and how much the disease symptomatically improved after chelation?

 

[Johnmac]

Does Cutler publish data (even informally) on the patients he has helped? For example, information on the disease the patient has, their hair mercury level (or mineral derangement) before chelation, how much their hair mercury level went down after chelation treatment, and how much the disease symptomatically improved after chelation?

Most of that info is published, yes - however I'm not sure it's all in the one place.

There are examples of before and after hair tests in his book, & may more on a website the Frequent Dose Chelation people use (Onibasu?).

And there are many patient reports published either on the FDC forum or the ?Onibasu website or both.

A post on FDC asking those questions would give you specifics.

 

[Hip]

Most of that info is published, yes - however I'm not sure it's all in the one place.

I am just looking for percentage figures (which is what I try to find for all ME/CFS treatments). What percentage of ME/CFS patients with high mercury make major improvements from mercury chelation, what percentage make minor improvements, and what percentage make no improvements. And how much chelation is necessary (how many Cutler 3-day rounds) in order to make these improvements?

@caledonia actually set up a poll asking this a while ago, which found that roughly 10% of patients had major improvements, and 50% had minor or moderate improvements (although "major" was not defined in this poll, so may mean different things to different people; myself I usually think of a major improvement as one where you move up one level on the standard ME/CFS scale of mild, moderate and severe).

I'd also be interested in knowing what percentage of ME/CFS patients have high mercury or deranged minerals (that would be a worthwhile poll to set up as well).

I presume most of those trying the Cutler protocol in the above poll would have tested positive for high mercury, which is what then made them try the protocol. But there is not indication of what percentage of ME/CFS patients test positive for high mercury.

A post on FDC asking those questions would give you specifics.

Would you have a link? I could not find any Cutler forums when I Google searched.

 

[Johnmac]

I am just looking for percentage figures (which is what I try to find for all ME/CFS treatments). What percentage of ME/CFS patients with high mercury make major improvements from mercury chelation, what percentage make minor improvements, and what percentage make no improvements. And how much chelation is necessary (how many Cutler 3-day rounds) in order to make these improvements?

@caledonia actually set up a poll asking this a while ago, which found that roughly 10% of patients had major improvements, and 50% had minor or moderate improvements (although "major" was not defined in this poll, so may mean different things to different people; myself I usually think of a major improvement as one where you move up one level on the standard ME/CFS scale of mild, moderate and severe).

I'd also be interested in knowing what percentage of ME/CFS patients have high mercury or deranged minerals (that would be a worthwhile poll to set up as well).

I presume most of those trying the Cutler protocol in the above poll would have tested positive for high mercury, which is what then made them try the protocol. But there is not indication of what percentage of ME/CFS patients test positive for high mercury.

Would you have a link? I could not find any Cutler forums when I Google searched.

Percentages - I'm pretty sure there's nothing like that around.

There are plenty of people who made major improvements (kids back from autism etc) and people like @stridor and @David Hammond - who are also here on PR - who've had revolutionary improvements. And others like me who've had quite good changes. (The B12 transdermal oils have had a much bigger impact on my CFS than chelation.) And some for whom it did nothing.

The Frequent Dose Chelation Yahoo group is now known as the Mercury Detoxification forum (sorry) - here.

The forum is very badly formatted & structured, which is why I don't go there any more. (I've told them they should switch to the software we use here, which is a dream IMO.)

These people give you good backgrounding.

 

[trickthefox]

im on my second round, weirdly the negetive reaction has turned into this unexplainable calm positive feeling, it just feels like about 30 mins after the dose things get a litter calmer in my overall state. The only problem is they flick a switch in my brain that makes it so i cant sleep, i got about 4 hours last night maybe. But they are certainly having quite an impact whatever they are doing. 12.5 mg of DMSA every 4 hours so far

 

[trickthefox]

BTW can mercury toxcisity throw up simmilar symptoms to lyme/bartonella like aching foot arches and knee pain? or is that most likely the lyme?

 

[Justin30]

BTW can mercury toxcisity throw up simmilar symptoms to lyme/bartonella like aching foot arches and knee pain? or is that most likely the lyme?

I have heard that when mercury mobalizes that pain can occur in the joints. Cant remember the link.

From talking with a recovered patient this was really key to their recovery.

Mercury and other heavy metal tend to hide in hard to mobalize places like the brain, CNS, joints and tissues that tend to have limited blood supply.

Im starting to think that these heavy metals are highly associated to ongoing or persistent symptoms especially considering that they tend to head to the brain and CNS which tend to be hard to repair, detox, etc.

 

[Justin30]

@caledonia may be able to provide some more insight as she is big on methylation and heavy metal stuff.

 

[caledonia]

@caledonia may be able to provide some more insight as she is big on methylation and heavy metal stuff.

If this is regarding @trickthefox 's question about what symptoms mercury can cause, the answer is just about anything. So yes, it can look like Lyme symptoms.

Your reaction to DMSA sounds like my reaction to ALA. A weirdly nice calm positive feeling, but also a bit stimulated.

You might want to cut back the dose until it doesn't keep you awake. I'm doing 1.5mg of ALA, which doesn't prevent me from sleeping.

 

[alicec]

According to Dr Amy Yasko, individuals with the CBS C699T mutation may have problems with sulfur containing supplements and foods, although I have not seen any studies that verify this (or even polls on this forum).

There are no studies and there is no basis to the claim. That SNP has no effect - the protein produced by the variant is identical to the one produced by the ancestral gene.