Discussion in 'Fibromyalgia Main Forum' started by quamijay, Jan 14, 2009.
when I havent seen one report of improvements or remission?
As you probably know, I was the originator of the suggestion that a partial block in the methylation cycle is the core biochemical issue in CFS. I think that people who have tried treatment for this or who are currently on it might be viewed with more credibility in responding to your question, since I might be perceived to have an axe to grind -)! Perhaps others will respond. However, since they haven't so far, I will make a few comments, for what they are worth.
The history of this is that in late 2004 I became aware of some research in autism involving the methylation cycle and glutathione, and as I learned more about this, I became convinced that it was also applicable to CFS. I wrote a hypothesis paper about this and presented it at the IACFS conference in January 2007. You can find it on the internet using the link in my bio.
I suggested to people with CFS and their doctors the treatments that were being used in autism that were based on supporting the methylation cycle. Initially, this was a very complex and expensive treatment, and many people with CFS could not use it for financial or cognitive reasons, or both.
With the help of a woman who was trying the more complex full Yasko treatment, I extracted what seemed to be the essential part of it, and eventually this came down to 5 supplements. I called this the simplified treatment approach. It was much easier to use, and cost less than $3.00 per day. I suggested this simplified treatment in late January, 2007.
The first person to try this treatment was a woman who posts to this board, who started in February, 2007. She experienced some striking benefits soon after beginning, and reported her experience on this board. This attracted the interest of several more people, and before long there were more than 60 people who had reported that they were trying it, and I was unable to keep track of everyone who was trying it.
A few of these people experienced adverse effects, and stopped the treatment. You can read about the adverse effects in my post to this board on July 18, 2007, which also describes the treatment in detail. As a result of these experiences, I intensified my urging that people should undertake this treatment only under the care of a physician, and that is still my position today.
Some people dropped out for other reasons, but quite a few continued with the treatment. We learned that the treatment produced symptoms of detox and that it took quite a long time to clear out the toxins that had accumulated in the bodies of PWCs, particularly those who had been ill for many years and thus had accumulated large body burdens of toxins and infections while their detox and immune systems were dysfunctional. We also learned that when certain other conditions were present, such as mold illness, they had to be dealt with before the person could completely recover.
My tallying of responses over time suggests that about two-thirds of those who have tried the treatment have experienced benefit from it. Many of their reports are in the archives of this board. Some who experienced very good success are no longer posting here, because, as they put it, they are out "having a life." I have not had time to query everyone lately to see how they are doing, though I wish I were able to do that. I just find myself very overwhelmed with responding to emails, consulting on individual cases, interacting with other researchers and with clinicians, and trying to continue pushing the research forward on CFS.
As time went on, I learned of a lab test panel that is able to determine whether a person has a partial methylation cycle block and glutathione depletion. It is offered by Vitamin Diagnostics, Inc., in New Jersey. I have posted the contact information on this test panel several times. I have now seen about 150 results of this panel, and they have been very helpful. I also now have results of repeated testing on the same people during treatment over 6 months, and nearly all show progress.
I am currently analyzing the results of a clinical research study on 30 women that will be reported in a poster paper at the upcoming IACFS/ME conference in Reno in March. This study is the first relatively controlled study of this treatment in CFS, but it is not randomized, placebo-controlled or doubly blinded. Dr. Neil Nathan did what was practicable to do in his individual practice, with the financial support that was available. I'm hopeful that the results will encourage more controlled studies to be done.
I now recommend that PWCs have the Vitamin Diagnostics panel run before starting the treatment, to see if the treatment is appropriate for them, and to have a baseline against which to measure progress later.
There are now several physicians who specialize in the treatment of CFS who have begun using methylation support treatment in their practices, and the reports coming from them have been favorable.
I am very encouraged by the results I have seen so far. I don't think we have had experience with enough cases over a long enough time yet, to be able to say whether most people will achieve full recovery or not, and if so, how long it will take. I can tell you that while improvement is often seen almost immediately, it can take many months to clear out the toxins and get the biochemistry back to normal. In the study I am analyzing now, which went to 6 months, there was considerable improvement, but the lab tests showed that the measured parameters were still improving at 6 months. I don't think it will be possible in most cases of CFS, whatever the treatment, to achieve complete recovery in times less than many months, because it just takes that kind of time to get the built-up toxins out of the body.
I hope these comments are helpful, and I also hope that some of those who are on this treatment will drop in and comment. Many of them are now active in the Yahoo CFS-Yasko group, which is focused specifically on methylation cycle treatment. You might be able to get more input on your question over there.
[This Message was Edited on 01/15/2009]
I didn't respond to this post, because I thought that if this person couldn't bother to look up all the past posts about people's experiences with the simplified methylation supplements, then it wasn't worth the effort to respond.
But if you want me to respond, I will be happy to say that I love, love, love the methylation supplements I take. I am very glad that you told us about them. Thank you so much.
They weren't the whole answer for me. I also had to get away from the toxic mold I was living in. But now they are helping me in my detoxing process. I'm doing the detox process extremely slowly so it is taking a while for me to feel better.
I hope that helps!
hey..I spent a long time searching and did not find much.
I am not skeptical, just want to know more...
thanks for the replies
The search facility on this new board is extremely difficult & so not easy to find past info. What a shame as so much is lost that way.
I tried "methylation" "methylation protocol" & "mcb" & got some info but you don't get a true picture & it gets tiresome searching through many posts.
There may be an easier way which I'd appreciate someone telling me but I'll experiment when I have some time.
I bumped one person's journey (Lbconstable - Laurie) & I also bumped Methylation protocol - The Basics but no-one responded to that so I don't think many people are interested.
As Rich said a lot of people on the protocol who used to post here now use the CFS _Yahoo Yasko group.
I tried the Methylation protocol for 3 months in 2007 & saw some marked flashes of improvements - very small but important for me. This proved to me that the protocol had the most promise of anything I'd tried. Due to many complicated health issues not associated with the protocol I had to stop the protocol. I tried to re-start many times but the health issues got in the way so I'm not really into it at the moment. When I feel stronger from my recovery I will re-start.
As Rich has emphasised you should get your doctor on board with the protocol. My doctor has read Rich's papers & said "it holds up in theory" & has fully supported me on using it.
The protocol is not a quick fix and there are no guarantees that it will help all.
You can also click on on Rich's name in this post & then click on posts by him to get more info.
For me it holds the most promise & I'm encouraged by people who have been doing it for between 1-2 years & showing improvements.
[This Message was Edited on 01/16/2009]
Oh, so you were foiled by the inept search function on this new board. I didn't realize it was SO incredibly bad.
Well, for me the methylation supplements have improved my sleep quality, restored my endocrine system, and allowed me to start getting thinner. All these things COULD (but we don't know for sure) be related to raising my level of MSH.
Before I began the methylation supplements, I used to take supplements of every hormone I could get my hands on. I used to take thyroid, DHEA, growth hormone precursor, phytoestrogen, and progesterone. Now I'm down to just taking thyroid supplements.
Another nice thing the methylation supplements have done for me is they keep my digestive system moving along. That comes in handy when I'm doing various kinds of detoxing treatments. A lot of detoxing treatments have a constipating effect.
In general, the methylation supps I take make me feel healthier, and I would be happy to stay on them for the rest of my life if necessary.
rich or anyone else,
can the protocol be done while using other treatment methods, like antivirals or antibiotics etc? They dont interfere with each other or anything?
Hi Forebearance. Can you please tell me how you determined you were being exposed to mold.
Quamijay, I'm not sure if I'm qualified to answer your question, but I'll take a stab at it since no one else posted anything.
As far as I know the methylation supplements don't interfere with antivirals or antibiotics. The methylation supplements are probably complementary to other types of treatments.
But when you first start taking the methylation supps, it can take a while to figure out what doses of them are right for you. For example, I had to cut the doses way back because I was detoxing faster than I could handle it. It was too hard. So I figured out what was right for me and in about three months I was nice and stable on them.
So you have to think about how many experiments you want to do on yourself at once. I wouldn't recommend starting the methylation supps at the same time you are starting something else. If you feel like you are stable on your antivirals and antibiotics, then it might be fine to start up the methylation supps. Do you see what I mean?
I actually did start taking the methylation supps while I was also taking a natural antiviral (Virastop). I had been taking the antiviral for several months at that point and I felt like it was going well and I was stable on it. I didn't have any problems with them interacting.
Andrew, in order to figure out if I was experiencing toxic mold poisoning, I did the tests on this page: http://www.biotoxin.info/consultations
The tests were very helpful. I was being poisoned in my old apartment. It was nice to finally figure out what was going on with my health.
I have a question regarding the methylation protocol and its impact on glutathione production. Let me just preface this by saying that I am not extremely well versed in the methylation protocol, but have done a little background reading thus far. I'm wondering whether the protocol is necessary if you have other means for consistently and permanently increasing glutathione levels. In other words, is the methylation protocol a means to an end, or is it necessary to correct methylation above and beyond addressing glutathione levels? I ask this because it wasn't until fairly recently that a supplement existed that could actually increase intercellular levels of glutathione (reduced glutathione is clearly worthless, glutathione injections only result in transient increases, whey protein's another story). I'm guessing you can't mention brand name supplements on here, so I'll refrain, but this particular one is clearly a breakthrough where glutathione is concerned, and so I'm wondering why one wouldn't just take this in lieu of addressing the methylation cycle. Again, I'm willing to hazard a guess that whatever I'm saying here demonstrates a complete biochemical, physiological naivete, but I was hoping that you could fill in the gaps for me. Regardless, the information you've made available here and on the CFSYasko forum is absolutely invaluable, so thank you.
Just bumping this question for Rich.
Here's the contact information on the panel, and also information for interpretation of the results:
Methylation Pathways Panel
This panel will indicate whether a person has a partial methylation cycle block and/or glutathione depletion. I recommend that this panel be run before deciding whether to consider treatment for lifting the methylation cycle block. I am not associated with the lab that offers this panel.
The panel costs $300 and requires an order from a physician or a chiropractor. The best way to order the panel is by fax, on your clinician’s letterhead.
Vitamin Diagnostics, Inc.
Rt. 35 & Industrial Drive
Cliffwood Beach, NJ 07735
Phone:+1 (732) 583-7773
Fax: +1 (732) 583-7774)
Lab Director: Tapan Audhya, Ph.D.
(usually at the lab on Tues. and Wed. from 1 to 3 p.m., Eastern time)
Dr. Audhya is willing to help clinicians with interpretation of the panel by phone.
Several people have asked for help in interpreting the results of
their Vitamin Diagnostics, Inc., methylation pathway panels. Here are my
suggestions for doing so. They are based on my study of the
biochemistry involved, on my own experience with interpreting more
than 120 of these panel results to date, and on discussion of some of
the issues with Tapan Audhya, Ph.D., who is the director of the
Vitamin Diagnostics lab.
The panel consists of measurement of two forms of glutathione
(reduced and oxidized), adenosine, S-adenosylmethionine (SAM) , S-
adenosylhomocysteine (SAH), and seven folic acid derivatives or
According to Dr. Audha, the reference ranges for each of these
metabolites was derived from measurements on at least 120 healthy
male and female volunteer medical students from ages 20 to 40, non-
smoking, and with no known chronic diseases. The reference ranges
extend to plus and minus two standard deviations from the mean of
Glutathione: This is a measurement of the concentration of the
reduced (active) form of glutathione (abbreviated GSH) in the blood
plasma. From what I've seen, most people with chronic fatigue
syndrome (PWCs) have values below the reference range. This means
that they are suffering from glutathione depletion. As they undergo
the simplified treatment approach to lift the methylation cycle
block, this value usually rises into the normal range over a period
of months. I believe that this is very important, because if
glutathione is low, vitamin B12 is unprotected and reacts with toxins
that build up in the absence of sufficient glutathione to take them
out. Vitamin B12 is thus hijacked, and not enough of it is able to
convert to methylcobalamin, which is what the methylation cycle needs
in order to function normally. Also, many of the abnormalities and
symptoms in CFS can be traced directly to glutathione depletion.
Glutathione (oxidized): This is a measurement of the concentration
of the oxidized form of glutathione (abbreviated GSSG) in the blood
plasma. In many (but not all) PWCs, it is elevated above the normal
range, and this represents oxidative stress.
Adenosine: This is a measure of the concentration of adenosine in the
blood plasma. Adenosine is a product of the reaction that converts
SAH to homocysteine. In some PWCs it is high, in some it is low, and
in some it is in the reference range. I don't yet understand what
controls the adenosine level, and I suspect there are more than one
factor involved. In most PWCs who started with abnormal values, the
adenosine level appears to be moving into the reference range with
methylation cycle treatment, but more data are needed.
S-adenosymethionine (RBC) (SAM): This is a measure of the
concentration of SAM in the red blood cells. Most PWCs have values
below the reference range, and treatment raises the value. S-
adenosylmethionine is the main supplier of methyl groups in the body,
and hundreds of biochemical reactions depend on it for their methyl
groups. A low value for SAM represents low methylation capacity, and
it usually results from a partial block at the enzyme methionine
synthase. Many of the abnormalities in CFS result from lack of
sufficient methyation capacity.
S-adenosylhomocysteine (RBC) (SAH): This is a measure of the
concentration of SAH in the red blood cells. In CFS, its value
ranges from below the reference range, to within the reference range,
to above the reference range. Values appear to be converging toward
the reference range with treatment. SAH is the product of reactions
in which SAM donates methyl groups to other molecules.
Sum of SAM and SAH: When the sum of SAM and SAH is below 268
micromoles per deciliter, it appears to suggest the presence of
upregulating polymorphisms in the cystathione beta synthase (CBS)
enzyme, though this may not be true in every case.
Ratio of SAM to SAH: A ratio less than about 4.5 also represents low
methylation capacity. Both the concentration of SAM and the ratio of
concentrations of SAM to SAH are important in determining the
5-CH3-THF: This is a measure of the concentration of 5-methyl
tetrahydrofolate in the blood plasma. It is normally the most
abundant form of folate in the blood plasma. It is the form that
serves as a reactant for the enzyme methionine synthase, and is thus
the most important form for the methylation cycle. Most PWCs have a
low value, consistent with a partial block in the methylation cycle.
The simplified treatment approach includes FolaPro, which is
commercially produced 5-CH3-THF, so that when this treatment is used,
this value rises in nearly every PWC. If the concentration of 5-CH3-
THF is within the reference range, but either SAM or the ratio of SAM
to SAH is below the reference values, it suggests that there is a
partial methylation cycle block and that it is caused by
unavailability of sufficient bioactive B12, rather than
unavailability of sufficient folate. I have seen this frequently,
and I think it demonstrates that the hijacking of B12 is the root
cause of most cases of partial methylation cycle block. Usually
glutathione is low in these cases, which is consistent with lack of
protection for B12, as well as toxin buildup.
10-Formyl-THF: This is a measure of the concentration of 10-formyl
tetrahydrofolate in the blood plasma. It is usually low in PWCs.
This form of folate is involved in reactions to form purines, which
form part of RNA and DNA as well as ATP.
5-Formyl-THF: This is a measure of the concentration of 5-formyl
tetrahydrofolate (also called folinic acid) in the blood plasma.
Most but not all PWCs have a low value. This form is not used
directly as a substrate in one-carbon transfer reactions, but it can
be converted into other forms of folate. It is one of the
supplements in the simplified treatment approach, which helps to
build up various other forms of folate.
THF: This is a measure of the concentration of tetrahydrofolate in
the blood plasma. It is lower than the mean normal value of 3.7
nanomoles per liter in most but not all PWCs. This is the
fundamental chemically reduced form of folate from which several
other reduced folate forms are made. The supplement folic acid is
converted into THF by two sequential reactions catalyzed by
dihydrofolate reductase (DHFR). THF is also a product of the
reaction of the methionine synthase enzyme, and it is a reactant in
the reaction that converts formiminoglutamate (figlu) into
glutamate. If figlu is high in the Genova Diagnostics Metabolic
Analysis Profile, it indicates that THF is low.
Folic acid: This is a measure of the concentration of folic acid in
the blood plasma. Low values suggest folic acid deficiency in the
current diet. High values are sometimes associated with inability to
convert folic acid into other forms of folate, such as because of
polymorphisms in the DHFR enzyme. They may also be due to high
supplementation of folic acid.
Folinic acid (WB): This is a measure of the concentration of folinic
acid in the whole blood. See comments on 5-formyl-THF above. It
usually tracks with the plasma 5-formyl-THF concentration.
Folic acid (RBC): This is a measure of the concentration of folic
acid in the red blood cells. The red blood cells import folic acid
when they are initially being formed, but during most of their
approximately four-month life, they do not import, export, or use
it. They simply serve as reservoirs for it, giving it up when they
are broken down. Many PWCs have low values. This can normally be
caused by a low folic acid status in the diet over the previous few
months, since the population of RBCs at any time has ages ranging
from zero to about four months. However, in CFS it can also be
caused by damage to the cell membranes, which allows folic acid to
leak out of the cells. Dr. Audhya reports that treatment with omega-
3 fatty acids can raise this value over time.
There isn't much experience with doing other treatments such as antivirals or antibiotics simultaneously with treatment for the methylation cycle block. The methylation cycle treatment can produce unpleasant detox symptoms, so if it is combined with another treatment that has severe side effects, the combination might be too much to tolerate. I know of one person who stopped the methylation treatment because of this. I think there are others who had been on an antiviral for quite a long time when they started the methylation cycle treatment, and it was possible for them to do both. There haven't been any controlled studies of simultaneous treatments with the methylation treatment.
Here's the protocol for the methylation cycle treatment:
March 26, 2008
SIMPLIFIED TREATMENT APPROACH
FOR LIFTING THE METHYLATION CYCLE BLOCK
IN CHRONIC FATIGUE SYNDROME
(Extracted from the full treatment program
developed by Amy Yasko, Ph.D., N.D.
which is used primarily in treating autism )
1. FolaPro : ¼ tablet (200mcg) daily
2. Intrinsi B12/folate : ¼ tablet daily
3. General Vitamin Neurological Health Formula : start with ¼ tablet and work up dosage as tolerated to 2 tablets daily
4. Phosphatidyl Serine Complex : 1 softgel capsule daily
5. Activated B12 Guard : 1 sublingual lozenge daily
All these supplements can be obtained from http://www.holisticheal.com, or all but the third one can be obtained from other sources.
The first two supplement tablets are difficult to break into quarters. We recommend that you obtain (from any pharmacy) a good-quality pill splitter to assist with this process. They can, alternatively, be crushed into powders, which are then separated on a flat surface using a knife or single-edged razor blade, and the powders can be mixed together. They can be taken orally with water, with or without food.
These supplements can make some patients sleepy, so in those cases they take them at bedtime. They can be taken at any time of day, with or without food.
GO SLOWLY. As the methylation cycle block is lifted, toxins are released and processed by the body, and this can lead to an exacerbation of symptoms. IF THIS HAPPENS, try smaller doses, every other day. SLOWLY work up to the full dosages.
Although this treatment approach consists only of nonprescription nutritional supplements, a few patients have reported adverse effects while on it. Therefore, it is necessary that patients be supervised by physicians while receiving this treatment.
 Yasko, Amy, and Gordon, Garry, The Puzzle of Autism, Matrix Development Publishing, Payson, AZ, 2006, p. 49.
 FolaPro is a registered trademark of Metagenics, Inc.
 Intrinsi B12/Folate is a registered trademark of Metagenics, Inc.
 General Vitamin Neurological Health Formula is formulated and supplied by Holistic Health Consultants LLC.
 Phosphatidyl Serine Complex is a product of Vitamin Discount Center.
 Activated B12 Guard is a registered trademark of Perque LLC.
I think I know the supplement to which you are referring. Several people have contacted me about it, and I am actually taking some of it myself, because a very persistent guy talked me into it. However, I don't have CFS. I don't know whether this supplement will actually raise glutathione on a permanent basis in a person who has CFS. I have no doubt that it can increase the glutathione level in people who don't have CFS, and especially if they keep taking it, which is of course the hope of those selling it, it being an MLM product.
Here's some of my history: I've been working on CFS for about 13 years now. In 1999, I learned from Dr. Paul Cheney that his patients with CFS nearly all had glutathione depletion. For the next approximately 5 years, I encouraged people with CFS to do things to build up their glutathione, including direct approaches and combinations of supplements that would help the liver to make glutathione, the same sorts of things that are in the supplement I think you are talking about. I compiled a summary of various ways of boosting glutathione, and it's on the phoenix-cfs website. What I found was that these approaches did help people with CFS temporarily, but if they were stopped, the glutathione levels dropped back down. They were not permanent solutions to the glutathione depletion.
In late 2004 I learned of the work of Jill James et al. in autism. They found that glutathione was also depleted in the autistic kids, but this was combined with a partial block in the methylation cycle, and these two were coupled, because correcting the methylation cycle block caused glutathione to come up to normal. There was a vicious circle mechanism involved, holding glutathione down.
I realized that this same mechanism was occurring in CFS, and that's when I shifted my focus to lifting the methylation cycle block. Dr. Neil Nathan and I now have good lab evidence in a study with 30 women that this works. I'm planning to present it in a poster paper at the IACFS/ME conference in Reno in March.
I would be interested to hear from anyone with CFS who has tried the supplement you are talking about, to hear what their experience has been. I'm not optimistic that it will produce a permanent rise in glutathione after it is stopped, but I'm certainly open to evidence to the contrary. Anything that will really bring a cure for CFS is something I'm in favor of.
Thank you so much for your thorough response! If I can put this in lay person's terms, it sounds like the ultimate goal here is to raise glutathione levels, and that, not the correction of the methylation cycle, is what will make PWC's feel less crappy. However, without correcting the methylation cycle, the body may never be able to create adequate levels of glutathione on its own. Where our anonymous supplement is concerned (let's call him/it Max), a direct increase of glutathione should have the same observable effects as unblocking the methylation cycle, but these effects very well may be temporary. It seems like even if this were the case, Max might still be a good supplement to provide some immediate relief while continuing to address the methylation cycle which I know can take a fair amount of time. Moreover, methylation cycle aside, if Max could provide the same results, and the only downside is that it's not a true "cure," but can still be curative as long as one continues to take it, this would still seem to be a godsend for PWC's. I know I for one would be willing to take a drug for the rest of my life if it meant I'd be functioning normally.
I bet you're probably right that Max wouldn't effect a permanent change for the better in glutathione levels. However, just having those increased glutathione levels for a period of time could effect permanent good in so far as it would most likely have a profound impact on the immune system and could obliterate some of the chronic viruses, yeast infections, etc. that are so common to CFS.
I tried taking Max a couple of months ago but had a really bad reaction similar to what I felt when I just took NAC by itself. I believe, but obviously am not sure, that this reaction had to do with the fact that I have very high levels of mercury in my blood. I think Max can be a dangerous supplement in this case because of the ALA and the NAC. The ALA, which is a potent chelator, in fact the only chelator that crosses the blood-brain barrier, must be treated with great caution in those with mercury poisoning as misuse of chelators can cause further damage if redistribution of mercury occurs. As for the NAC, its high free thiol content can also wreak havoc on those with mercury poisoning. Nevertheless, I really believe strongly in the potential of Max, so much so, in fact, that I decided to have my mercury amalgams removed and do chelation so that I will hopefully be able to try it again. So far, I've had the amalgams removed and am doing pre-chelation treatments, but I will update you if I have any more experience with Max.
One other anecdotal piece of info is that the doctor who recommended Max to me (in whom I have the utmost of confidence) said he had a patient with fibro whose pain greatly diminished within one week of taking Max. Anyway, the product is still relatively new, so it remains to be seen if it will live up to it's potential (I have to say I was skeptical of the MLM aspect, but everything else I read/heard about it seemed completely legit).
Yes, quite a few of the symptoms of CFS, in my opinion, are caused directly by glutathione depletion. However, not all of them are. Many of the others are caused by the lowered methylation capacity because of the partial methylation cycle block. For example, the synthesis of the following substances, all of which are low in many people with CFS, require methylation: creatine, carnitine, coenzyme Q-10, choline, and melatonin. There are actually several hundred reactions in the body that require methyl groups, so a lot of subtle problems no doubt arise from this deficit in CFS. Methylation is necessary for silencing DNA, such as for shutting down viruses and for controlling proper gene expression. Methylation is also heavily involved in the biochemistry of the neurotransmitters. So lowered methylation capacity is a biggie in CFS.
Another important aspect is the partial block in the folate metabolism, which goes along with the partial block in the methylation cycle, because the two are hooked together at methyionine synthase, which is where the partial block is located. An operating folate metabolism is necessary for the production of DNA and RNA to make new cells. So the places where this needs to happen at fairly high rates are going to have problems because of this. The gut and the blood cell production in the bone marrow come to mind.
So, anyway, glutathione depletion is not the whole story in CFS. It's the vicious circle combination of this plus the partial block in methylation and folate cycle that produce the complete set of problems known as CFS, in my opinion.
I think you made a good point about the problems with some of the ingredients in this supplement if mercury is present. Aposhian et al. showed in rats that NAC can move mercury into the brain. Quig has recommended keeping the NAC dosage down to 300 mg per day if there are a lot of heavy metals present. There's also a paper in the literature that shows that ALA slows down the detox of mercury by the liver, because it binds to glutathione and prevents it from binding to mercury.
I've heard some sad stories about chelation going awry, so I've become pretty conservative about mercury detox. I favor slowly lifting the methylation cycle block and allowing the body to detox the mercury in its normal way. This will probably take longer, but I think it is safer.
It's great to hear from you again! I was beginning to wonder if you had secretly done the methylation cycle block treatment, had totally recovered, and were out having a life! Actually, I would rejoice for your sake if that happened, but it would really get lonely around here without your constructive criticism! I hope you're having a reasonably happy new year!
I'm glad you're doing better, and I hope the good times will continue to roll!
There haven't been enough people on the methylation cycle block treatment long enough to make good estimates of how long recovery will take or how complete it will be. There are just a few who have been on it consistently for as long as a year or more. Some of them have reported that they are now able to work full time, or could if they wanted to. Mold illness has been a big factor for some, and they had to deal with that before they could achieve really good progress on the methylation treatment. Some did other treatments simultaneously, so it's difficult to say what the important treatments were in each case, but the methylation cycle treatment appears to have been at least a significant part of the treatment that benefited them.
In our more controlled study, we have lab test data out to six months for 29 women now, and while most of them report symptomatic improvement, it's clear that glutathione and the methylation cycle parameters are still improving at six months for most of them, so it seems clear that it takes longer than that length of time for most PWCs, and I don't think we've seen all the benefit they will receive yet at six months. I think most of them are still detoxing. That seems to agree with the experiences reported by the few uncontrolled volunteers who've stayed on the treatment, on this board and elsewhere.
I did hear a few days ago from a person who started in Nov. 2008 and is planning to return to work in March 2009. That's pretty fast, and I'm surprised, especially since the person had been ill for quite a few years. So it seems to vary some, depending on the individual. We need more data, and hopefully that will happen.
Alright so methylation clearly needs to be addressed. I have two questions for you in regard to this treatment and then I will try to glean whatever other information I need from the archives here and the CFS_Yasko forum. The first question I have is whether or not you can benefit from taking some of the methylation supplements and not others or if that's just a waste of time because they need to work in tandem? I guess, more specifically, I'm wondering if I would benefit at all from taking all the supplements except phosphatidyl serine. I realize that you've already pared the list down to the things that you consider essential, but phophatidyl serine really exacerbates my fatigue (I guess presumably b/c it lowers cortisol levels?).
The second question is, if upon taking these supplements, I start to feel more fluish/generally ill, is that a good sign? That has been my experience when I've tried to take B12 and folate. If I knew that this was a reflection of something positive occurring in my body, I could persevere with it.
Thanks for your help,
Separate names with a comma.