1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
Discuss the article on the Forums.

Rich Vank's Simplified Methylation Protocol Poll

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Cort, Apr 21, 2010.

?

I have tried Rich Vanks Simplified Methylation Protocol with the following results:

  1. I am in effective remission (80%+)

    1 vote(s)
    1.3%
  2. Major Improvement

    20 vote(s)
    25.3%
  3. Minor improvement

    22 vote(s)
    27.8%
  4. No change

    22 vote(s)
    27.8%
  5. Minor crash

    2 vote(s)
    2.5%
  6. Moderate crash

    0 vote(s)
    0.0%
  7. Major crash

    1 vote(s)
    1.3%
  8. Unable to continue protocol

    11 vote(s)
    13.9%
  1. aquariusgirl

    aquariusgirl Senior Member

    Messages:
    947
    Likes:
    91
    that's interesting. i guess this problem would be a big problem if a person has a particularly leaky blood brain barrier. I think alcoholics have this problem. Do PWCs & autistic kids have this problem?
    thanks rich.
  2. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,039
    Likes:
    3,198
    N. California
    Hi Rich--

    So what does it mean if you have these excitoxicity symptoms already, (as in that constantly wired feeling), even BEFORE you begin a methylation protocol?

    I don't quite know how to ask a question here... because since I already have a lot of MCS related issues and toxicity issues, I have avoided doing a full on methylation protocol. Whenever I have tried it, the toxicity symptoms become overwhelming and really unmanageable.

    I know you have suggested to go very slowly, which I have attempted in the past... taking just tiny doses once a week... but will that be enough to do anything at all.. given that I already have the symptoms I do, given that I have such a toxic overload?

    What do you suggest for people like me? with severe MCS, in addition to CFS, and little tolerance for pulling more toxins out into the bloodstream?
  3. monobear

    monobear

    Messages:
    28
    Likes:
    9
    California
    I've worked up to the full protocol and have been on it every day for two and a half weeks now. I'm not feeling anything, good or bad. Was wondering if it would be ok to try increasing the b-12, or is this a no-no? Suggestions?
  4. Lee Ann

    Lee Ann

    Messages:
    83
    Likes:
    7
    Tennessee
    Hello Rich,
    I was curious to find out if MTHFR is the same as the Methylation test you suggest.
    Thanks
    Lee Ann
  5. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    746
    Hi, aquariusgirl.

    It has been hypothesized that the blood-brain barrier leaks in ME/CFS:

    Med Hypotheses. 2001 Aug;57(2):231-7.
    Chronic fatigue syndrome: neurological findings may be related to blood--brain barrier permeability.

    Bested AC, Saunders PR, Logan AC.

    Environmental Health Clinic, Sunnybrook and Women's College, Health Sciences Centre, Toronto, Canada.
    Abstract

    Despite volumes of international research, the etiology of chronic fatigue syndrome (CFS) remains elusive. There is, however, considerable evidence that CFS is a disorder involving the central nervous system (CNS). It is our hypothesis that altered permeability of the blood-brain barrier (BBB) may contribute to ongoing signs and symptoms found in CFS. To support this hypothesis we have examined agents that can increase the blood-brain barrier permeability (BBBP) and those that may be involved in CFS. The factors which can compromise the normal BBBP in CFS include viruses, cytokines, 5-hydroxytryptamine, peroxynitrite, nitric oxide, stress, glutathione depletion, essential fatty acid deficiency, and N-methyl-D-aspartate overactivity. It is possible that breakdown of normal BBBP leads to CNS cellular dysfunction and disruptions of neuronal transmission in CFS. Abnormal changes in BBBP have been linked to a number of disorders involving the CNS; based on review of the literature we conclude that the BBB integrity in CFS warrants investigation.
    Copyright 2001 Harcourt Publishers Ltd.

    PMID: 11461179

    I don't know of direct evidence for this, but it does seem likely to me.

    Rich
  6. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    746
    Hi, Dreambirdie.

    I don't know for sure what would help you. What I can do is suggest some possibilities, based on biochemical theory. One is that there is a reaction that converts glutamate to GABA, and it requires P5P, the activated form of vitamin B6. B2 is needed to activate it. So perhaps supplementing with B-complex vitamins could help.

    Another possibility might be liposomal glutathione, in the hope that some of it would make it into the astrocytes, and that they would then be able to pump glutamate out of the synapses faster, because there would be less oxidative stress in their mitochondria, and they could thus make more ATP to drive the import of glutamate and its conversion to glutamine, both of which require ATP.

    Another possibility might be to take some of the supplements Amy Yasko has listed to help with excitotoxicity. These include GABA, theanine, progesterone cream. magnesium, taurine, Valerian root, and some others (her book "Autism, Pathways to Recovery" or her forum at www.ch3nutrigenomics.com give more information about these supplements). She also emphasizes minimizing foods that contain glutamate or aspartate, especially MSG or aspartame (Nutrasweet).

    Another possibility might be to take activated charcoal or other binders to tie up the toxins and carry them out in the stools, so that once they have been delivered to the gut via the bile they will not be reabsorbed from the gut and enter the enterohepatic recirculation.

    Another possibility might be to drink lemon juice regularly (being careful to use a drinking straw and to flush the teeth with water immediately afterward, to protect the tooth enamel). This will paradoxically alkalinize the urine, and that will cause toxins that are chemically in the form of weak acids to tend to be excreted in the urine rather than being reabsorbed by the kidneys and returned to the blood.

    Those are the things I'm aware of.

    Best regards,

    Rich
  7. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    746
    Hi, monobear.

    It would be O.K. to raise the dosage of B12, and it might help. There are also other possibilities:

    You may be lacking enough of the vitamin and mineral cofactors that are needed by the enzymes in the methylation cycle and related pathways. These include the other B vitamins, zinc, magnesium, manganese, copper, and selenium. Some people have HPU, which depletes several of these cofactors, especially zinc and vitamin B6.

    Another possibility is high levels of toxic heavy metals, such as mercury, which can block enzymes in this part of the metabolism. If this is the problem, it may be necessary to do some chelation before the methylation cycle will get going.

    If it's feasible for you to do some testing, that could help to pin down what's going on. The Health Diagnostics and Research Institute methylation pathways panel will give direct measures of the status of the methylation cycle, the folate metabolism and glutathione. A Genova Diagnostics Metabolic Analysis Profile, together with amino acid testing preferably both plasma and urine, and urine essential elements panel, such as those offered by Doctor's Data) will indicate whether there are deficiencies in cofactors. A Doctor's Data urine toxic elements test, taken with and without chelator challenge with DMSA, will give an indication of the presence of toxic heavy metals. All of these except the first one are available without a doctor's order from www.directlabs.com.

    Best regards,

    Rich
  8. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    746
    Hi, Lee Ann.

    The MTHFR test is a genetic test that looks for genetic polymorphisms (also called SNPs) in the gene that codes for the MTHFR enzyme (methylene tetrahydrofolate reductase). This is the enzyme that makes L5-methyl tetrahydrofolate, which is the form of folate needed as a reactant by the methionine synthase reaction, which links the methylation cycle with the folate cycle, and which is partially blocked in nearly all cases of ME/CFS. If a person has the SNPs in the MTHFR gene, it means that their cells will have more difficulty in producing this active form of folate, and that will contribute toward a tendency to develop a partial methylation cycle block.

    The Health Diagnostics and Research Institute methylation pathways panel, on the other hand, is a biochemical panel. It measures the actual concentrations of metabolites in the methylation cycle and the folate metabolism, and it also measures reduced and oxidized glutathione. One of the metabolites measured on this panel is L5-methyl tetrahydrofolate, which is produced by the MTHFR enzyme.

    I prefer the latter panel, because it is more direct, and it measures what is actually there in the biochemistry, rather than a tendency toward something.

    If a person wants to do the full Yasko treatment, then having the SNPs information is necessary, because the full treatment is tailored to the individual, depending on their set of SNPs. But if one is going to do the simplified treatment, it isn't necessary to know the SNPs, though more information is always helpful.

    Best regards,

    Rich
  9. monobear

    monobear

    Messages:
    28
    Likes:
    9
    California
    Thank you Rich. Unfortunately i can't afford the testing right now. However, my most recent amino-acid urinalysis showed normal levels of all aminos, with the exception of taurin(?) (I don't have them here in front of me at the moment). I am on magnesium but will try starting the other supplements. Any particular brands you would recommend? Thank you!
  10. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    746
    Hi, monobear.

    I think there are several reliable suppliers of nutritional supplements. I favor Life Extension Foundation, but there are several good suppliers. Consumerlab.com tests different brands of supplements and reports the results, and I think they are a good source of information about this.

    Best regards,

    Rich
  11. rwac

    rwac Senior Member

    Messages:
    148
    Likes:
    36
    Hi Rich,

    What about just taking bulk Soy Lecithin ? It would supply all the phospholipids and not reduce cortisol because all of them are balanced. Or you can find egg or sunflower lecithin too.

    Cheers!
    rwac
  12. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    746
    Hi, rwac.

    Yes, I think that would probably be O.K., for those who want to avoid phos. serine. There are some people who are allergic to soy, so just like phos. serine complex, soy lecithin wouldn't work for them, but as you mentioned, there are alternative lecithins, and lecithin will supply the other phospholipids, as you mentioned. I do think it's important to support the membranes, because oxidative stress has damaged them.

    Best regards,

    Rich
  13. Lee Ann

    Lee Ann

    Messages:
    83
    Likes:
    7
    Tennessee
    Thanks Rich,
    I knew not paying attention in Chemistry class was going to catch up with me someday !! I slightly understand what you are saying. I did mention the methylation panel to my doctor and to my surprise (ha) he didn't know what I was referring to. I'm surprise I even had the MTHFR done. Thanks again for your help.
    Lee Ann
  14. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    746
    Hi, Lee Ann.

    Mainstream physicians are usually not aware of the methylation pathways panel. It is offered by a specialty lab, the Health Diagnostics and Research Institute in New Jersey. Mainstream physicians usually stay with the larger commercial medical labs that offer tests that are covered by Medicare and insurance companies. Most mainstream physicians rely on what they learned in medical school and what drug representatives have told them since. If a drug rep from PamLab has visited a doctor, they are usually aware of the methylation issue, because PamLab supplies prescription "medical foods" such as CerefolinNAC, Metanx, and Deplin, which support the methylation cycle and are used to treat other conditions that result from methylation problems. "Medical foods" consist only of nutritional supplements, but they are given by prescription. These "medical foods" are starting to be used to treat ME/CFS by some docs now.
    I don't think they run the methylation pathways panel before prescribing them, though.

    Best regards,

    Rich
  15. Vegas

    Vegas Senior Member

    Messages:
    498
    Likes:
    508
    Virginia
    Rich, speaking of mainstream physicians, I am seeing an increasing number of them prescribing Cerefolin NAC for neurological injuries, TBI and stroke in particular. It's hard to gauge what this doing for these folks, but I was surprised to see several different patients in the last couple of weeks that had been prescribed Cerefolin by a couple of different specialists.

    Also, I wanted to mention on this thread the potential importance of Selenium for some. I knew it was a key for GSH-px activity, but I had never supplemented with more than the 30-40 mcg in the neurological health formula. It seems the 200-400/day of the SeMC has had a very dramatic positive effect. Perhaps this suggests mercury toxicity. I actually had 3/5 amalgalms taken out yesterday and was expecting some adverse sequelae, but I feel pretty good.
  16. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    746
    Hi, Vegas.

    Thanks for this information.

    Best regards,

    Rich
  17. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,039
    Likes:
    3,198
    N. California
    Hi Rich-- Thanks for your response.

    Because there has been an ongoing debate about WHICH BRAND of B COMPLEX to take.... and because I have no interest in thinking too much about that... could you just tell me which one (in your opinion) is the better, if not the best, choice? I DO NOT tolerate methyl B12, and don't want a B Complex with that in it--like the B Right.

    I also take cyanocobalamin B12, as I have always tolerated that one, so for now it is my choice. I will consider doing the hydroxo (Perque), next in line, when I feel a bit more stable energy wise. Detoxing which weak has always been a huge mistake, and fortunately I have now learned my lesson with that.


    As for your other suggestions:
    I already take P5P and have no problems with it at all.
    Magnesium has been moderately helpful.
    Theanine has been almost completely ineffective, unless I take 500 mg at a time, which is just too expensive.
    GABA gives me a paradoxical reaction--makes me very anxious. Initially it seemd to help, and then it went in reverse. :confused:
    Progesterone cream also used to help, but now it is not doing the trick anymore.
    Valerian makes me even more hyper and causes me to hallucinate giant pulsing aqua colored spots.... :D

    The lemon water is a great simple idea, which I used to do, and keep forgetting... so thanks for the reminder! As is also the activated charcoal.

    I do think that I have issues with an overloaded liver, so NAC is helpful too. I take between 500-1500 mg per day. If I don't take it, I notice the difference.

    My diet is all organic, mostly vegetables and animal proteins, with some fruits and nuts, and is very free of the toxins you mention. So for now I'm content with it.

    Thanks again for your input ~~DB
  18. Vinod3x3

    Vinod3x3

    Messages:
    1
    Likes:
    0
    This protocol is in no way a quick fix and it is not easy to do. In fact it can get pretty rough.
    In the beginning after taking the full dose I suddenly (within a few minutes) developed rapid pulse
    (110) and high blood pressure (185/99). That was scary but I survived - by the next day everything had setteled down.
    Now I am carefully moving forward - every other day at 1/4 dose. After every dose I get some symptoms but
    at the same time there is something improving. Less symptoms, more focus and concentration, more energy, takes longer for me to tank.
    The number one improvement is I am having less of the overwhelming feeling of fatigue and heavyness, and less brain fog.

    I am continuing on because it is doing something positive and I want to see where this is going. Of all of the protocols I have tried (dozens) over the years this one gives me a sense of hope. This protocol is definitely not for everyone - Dr. Nathan emphaseses that one needs a physician to lead you through this protocol
    (it could be dangerous) and in general I agree. But for those like me who do not have access to a physician who knows anything at all about this protocol - the options are limited. So if you are determined to do this on your own - these are my suggestions.

    Go slowly - start at very low doses maybe 1/8 tab of the folic acid products (including the multiple vitamin mineral). Stay at each level for one week then go up - very slowly - watch symptoms carefully since at times it takes several days before the 'dump' comes and when it does back off until the symptoms calm down - if the symptoms were not dramatic then go back to the dose you were taking - if they were dramatic then start with a smaller dose of the folates and watch carefully - if the symptoms seem to be more than your body is dealing with then stop until you can get some expert advice.

    Remember that what is happening here is that the improved methylation is causing stored and blocked toxins to be released - the symptoms are being caused by these circulating toxins (remember again these toxins CAN be dangerous - like heavy metals). If the body is unable to deal well with this and has trouble eliminating these substances then one can end up stressing the elimination functions and one can get back up of these toxins to such a level that it is possible to be overwhelmed. The most obvious lesson I have learned is that it is not adisable or even necessary to go fast on eliminating these substances go slowly - do not in any way stress yourself. Stress is obviously the biggest enemy of those of us who are already under huge stresses. Let these toxins slowly be eliminated.

    My experience and intuition is that there is something very important in the concept of methylation block - but the techique for dealing with this is so far pretty primitive and has many limitations (most of my friends with CFS could not possibly do this protocol (even with proffesional help) because they are not strong enough to face the challenges. This reminds me of certain medical protocols like Chemotherapy or Interferon treatments - the side effects are so dramatic that a certain percentage never finish the protocols - it is simply to much for them.

    Finally - I am seeing definite benefits as mentioned above and am committed - since very few things have helped me even this much - I do not kid myself that this is going to be easy - but the benefits are keeping me going. The Tibetans have a term that describes ones ability to be successful in this life - they say 'it takes skillful means'. I would advise this protocol for those who are desciplined and are able to control themselves and go slowly with full awareness. Otherwise one could end up in trouble.
  19. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    746
    Hi, Vinod3x3.

    Thanks for posting about your experience with this protocol. I'm glad to hear that you are experiencing some improvements. I also appreciate your advising going slow and being cautious.
    I hope the benefits will continue for you.

    Best regards,

    Rich
  20. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Messages:
    1,767
    Likes:
    329
    Southern USA
    What do you notice about NAC? I take it but not every night.

See more popular forum discussions.

Share This Page