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Lessons from ME/CFS: Finding Meaning in the Suffering
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Rich Vank's Simplified Methylation Protocol Poll

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

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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. Vegas

    Vegas Senior Member

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    Methylation Treatment--19 weeks

    Slowly over time a pattern is developing. I am going from feeling o.k., 1 out of 10 days, to feeling o.k. 3-4 days a week. On some good days I get a mild stimulated feeling, which is typically not a desirable response, but in this case it feels right. I'm nowhere near getting back on my bike and it will be awhile before I am likely to exercise, but the prospects now don't seem so unrealistic. In between there are some challenging days, but fatigue is much more consistently mild to moderate, and rarely severe. As previously, noted the most severe fatigue of the past 19 weeks was connected to an incidental cold virus I picked up...and I will reiterate that this virus nearly made me think I had lost all ground. I was completely exhausted and I could observe that the chemical processes that I had been successfully stimulating abruptly and dramatically slowed down. Given the fact that I had not picked up any noticeable viruses from the time I became severely fatigued until after I started methylation treatment, I have to wonder if my immune system shifted to TH1 somewhere during this time. Does this represent a protective mechanism when glutathione status becomes depleted? I really don't have a clue, but I can attest to the impact of viral illnesses on glutathione. Folks you need to get that glutathione up.

    Obviously many pathogens can stimulate a strong immunological response and I obviously don't know precisely what is causing all the detox symptoms, but based on my response to other treatments, I still believe a lot of what I am dealing with is "subclinical" bacterial and fungal infections. Like others have reported, it is very much like peeling away layers. Early on, it seemed that all those layers were similar, but detox symptoms have changed over time. Presumably, this has something to do with certain infections that require higher glutathione concentrations to induce eradication.

    My wife has now figured out days when I am detoxing more heavily by they way I smell, and by the bags/circles under my eyes. Usually those days are more difficult, but sometimes it feels like the methylation engine is revved up and the chemical processes are better meeting the demands created by the immobilization of the pathogens in the blood stream. When my metabolism is sped up, there is an obvious use of water. I'm not necessarily more thirsty, but it is clear my body is using more water because I can go nearly the whole day without urinating despite regular hydration. By the way, I haven't found activated charcoal to be of any particular benefit. Perhaps I haven't taken enough.

    My tolerance for methylation supplements is increasing or rather my detox symptoms relative to earlier dosages of these supplements have diminished. I've found that for me adenosylcobalamin is just as useful as methylcobalamin, and I use both of these to good effect. I've also added other methylation support over the last month including Sam-E, "True Whey" and Zinc. The thing about Nondenatured whey is that it, like any of the methylation supplements, it can intensify the detox symptoms and of course the sulfite headaches are not fun. After a month or so, I can report that these sulphite side-effects have improved considerably. Still, the nondenatured whey cannot be viewed as something that provides consistent symptomatic relief. Sometimes it makes me feel better, and other times its effect is just the opposite. In those instances, however, it is clearly accelerating the detox, and the aftereffects of this detox are seemingly what is causing the adverse effects. I wouldn't summarily dismiss nondenatured whey's utility because it may be doing some good that is not immediately visible, but I have no doubt some with very poor health could get worse on this or any methylation support if done too agressively.

    This is what I think has been most important to methylation support:
    adenosyl + methyl (Freddd's recommended brands...thanks Freddd)
    Metafolin
    Folinic Acid
    Zinc
    Magnesium
    Nondenatured Whey
    Co-enzymated B-complex (P5P anyone)

    I also believe my focus on omega 3's, 6's, and dietary protein was important, especially early on when I was experiencing very high levels of oxidative stress.

    Things that I couldn't recommend: NAC, TMG.

    Things that made/make me worse: D-Ribose (I would urge people to use caution with this, especially if you have high levels of mito damage. Perhaps I have some genetic anomaly, but this stuff creates an unmistakable adverse reaction that can be objectively measured by my heart rate, perspiration, etc.), high dose-liposomal Vitamin C (like i/v glutathione, it has the potential to do bad things in those with poor detox capability) , anything that artificially stimulates energy.

    As always, take it for what it is worth, one person's opinions and observations. Feel free to correct any obvious inaccuracies or fallacies.
  2. anne_likes_red

    anne_likes_red Senior Member

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    Vegas,
    Thanks for all the detailed progress reports. (I get the black bags under my eyes with detox too....and a different smell that I can pick up on but others can't, or perhaps they're just being polite?!)

    Great tips, thank you :)

    What type of magnesium are you using, and when do you take it?

    All the best for your continued improvement!
    Anne.
  3. Joopiter76

    Joopiter76 Senior Member

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    Id like to add that with a CBS+ or NOS+ you should be carefull with any form of B6 (p5p) and Omega 3,6,9 (lipids) I made this experience so if Molybdenum helps against headache I guess the CBS is upregualated, so B6 should me reduced. I stopped talking any B6 and p5p and its better for me. But it can be that you only feel the difference if someone is in the sutuatuion that the methylation cycle is running. because if its not running the produced sulfites through the CBS+ are also low.

    Improvement will take time, as the study Rich did showed that there was still markable improvement after 9 months on the protocol it will take years to really recover I guess. Most things in the body that are wrong in us are not measurable. So Yasko says in her discussion group that it will continue to improve, and if someone doesnt know Yasko has worked on CFS, FM, Parkinson, ALS before she concentrated on autism. So everyone who has improved can be (almost) sure to continue to improve over the months.

    did anyone of you recognize a drop of the body temperature with detox symptoms?

    regards
  4. Vegas

    Vegas Senior Member

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    Yes the detox odor is not my wife's favorite. It diminished for awhile, but is back.

    Some of the smart folks on this board recommended some magnesium supplements that I hope to try, but I'm still taking magnesium malate because it is what I have consistently taken. (I wanted the predictability...in other words, I'm trying to maintain some semblance of science to the evaluation of supplements eventhough I know half of my observations are probably wrong.)

    Source Natural Magnesium Malate, qid, (about 600 mg of mg). I take two in the a.m. and two at lunch. Honestly, at this time I don't think the timing makes much difference, for me as it's more about keeping concentrations up. Back in the day when I had muscle cramping, difficulty sleeping, electrolyte imbalances, OI, more involved sympathetic nervous system dysfunction, etc. I would take it all day long, but esp. at night. I now have no sleep dysfunction after having apnea (not obstructive), no problems with alpha wave intrusion, night sweats, etc. OI and electrolyte problems are gone, and I only get leg cramps when I push detox too fast. Man I used to love waking up in the night when my calf muscles would seize up and contract so badly they would ache for a week or more. :)

    Thanks for your encouragement.
  5. Vegas

    Vegas Senior Member

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    I'll have to get back to you when I have more time, but I've been watching my temp and it hasn't changed much. Up briefly to 97, now at 96.7-8. Pre-meth it was 96.8, and in the upper 95's at my worst.
  6. monobear

    monobear

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    Hi- I'm new to the forum (though I've lurked for some time!). I am planning on starting the simplified protocol within the next few weeks. I don't know if the lab Rich uses is re-opened, but even if it is I can't afford the tests. I was wondering if there are any basic tests (preferably insurance covered) my regular doctor could/should run while I'm on the protocol to make sure I'm not doing any damage?

    Also- how important in the scheme of things are the perque losanges? I have had weird reactions to B12 in the past, mostly mild tachychardia, and I'm wondering if skipping that step will have a major impact on the overall protocol.

    I am very nervous but also really excited to try this protocol. My main symptom is overwhelming fatigue stemming from mono/ebv, and I really want to do anything I can to "jumpstart" the mitochondria. Reading all your experiences has been fascinating. Hopefully I can learn more as I go along. Thanks for any advice!
  7. richvank

    richvank Senior Member

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    Hi, monobear.

    Welcome!

    Yes, the lab has been back up for several months now, and is running the methylation panel regularly. I think this panel still costs $300, and I think that includes the shipper to send the samples back to the lab.

    The standard blood and urine tests that mainstream physicians run will tell you if there are problems with the major organs (including liver and kidneys). These tests include a standard urinalysis, a complete blood count, and a comprehensive metabolic blood panel. These are generally covered by insurance, and are used very routinely by physicians.

    The two most important components of methylation-type treatments are the B12 and the folates. Both are needed to get the methionine synthase reaction going normally, so as to normalize the operation of the methylation cycle, which in turn will raise glutathione and also normalize the folate metabolism.

    Most people who undergo methylation treatment do experience symptoms that appear to be associated with detox, and they run the gamut. I'll post a list of what people reported early on when this protocol was first introduced in 2007. You noted that in the past B12 has produced mild tachycardia. If you have arrhythmia ("skipped beats", palpitations) it would be wise to make sure you have enough magnesium and potassium in your body. Freddd, on this forum, has emphasized that the potassium level can drop rapidly on his protocol, which involves higher dosages of B12 than I have suggested in the simplified protocol, but supplementing potassium might still be a good idea if this occurs.

    You can also start with lower dosages, or skip a day or two between dosages at first, and then work up as you are able to tolerate the treatment.

    I'm glad to hear that you will be working with your doctor. There are a small number of people who have reported serious adverse effects while on this treatment, even though it consists only of nutritional supplements, so having a doctor monitoring you is important.

    I hope this treatment turns out to help you.

    Best regards,

    Rich


    The following reported symptoms, gathered from various PWCs trying this simplified treatment approach, are those that I suspect result from die-off and detox:

    1. Headaches, “heavy head,” “heavy-feeling headaches”
    2. Alternated periods of mental “fuzziness” and greater mental clarity
    3. Feeling “muggy-headed” or “blah” or sick in the morning
    4. Transient malaise, flu-like symptoms
    5. Transiently increased fatigue, waxing and waning fatigue, feeling more tired and sluggish, weakness
    6. Dizziness
    7. Irritability
    8. Sensation of “brain firing: bing, bong, bing, bong,” “brain moving very fast”
    9. Depression, feeling overwhelmed, strong emotions
    10. Greater need for “healing naps.”
    11. Swollen or painful lymph nodes
    12. Mild fevers
    13. Runny nose, low grade “sniffles,” sneezing, coughing
    14. Sore throat
    15. Rashes
    16. Itching
    17. Increased perspiration, unusual smelling perspiration
    18. “Metallic” taste in mouth
    19. Transient nausea, “sick to stomach”
    20. Abdominal cramping/pain
    21. Increased bowel movements
    22. Diarrhea, loose stools, urgency
    23. Unusual color of stools, e.g. green
    24. Temporarily increased urination
    25. Transiently increased thirst
    26. Clear urine
    27. Unusual smelling urine
    28. Transient increased muscle pain
  8. Jenny

    Jenny Senior Member

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    I have 75% of these 'detox' symptoms every day. This has been going on for most of the last 6 years. It's my 'normal' ME!

    Jenny
  9. richvank

    richvank Senior Member

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    Hi, Jenny.

    Thanks for your comment.

    As I think you know, I believe that the immediate or proximal cause of many of the symptoms in ME/CFS is the depletion of glutathione. When a person starts on methylation treatment, I suspect that initially the glutathione level goes down even more, as more of the homocysteine is converted back to methionine, and less is therefore available to go down the transsulfuration pathway toward glutathione synthesis. This may explain why many of the symptoms people report on the methylation cycle are "normal ME" symptoms.
    Later on, glutathione does come up on this treatment, and most people do experience a lessening of their symptoms, as we found in the clinical study of this protocol.

    Best regards,

    Rich
  10. Cloud

    Cloud Guest

    Rich and everyone, I have a question regarding Glutathione nasal spray supplementation. I have read snippets of info suggesting that it's a bad idea because it may encourage the innate methylation cycle to continue malfunctioning, and may even add to the partial block. I am wondering if there is much validity to this idea, especially for me already having made significant improvement on the Simplified Protocol for the last 8 months?

    I want to give the Glutathione nasal spray a try....any concerns?
  11. firefly

    firefly

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    Dear Rich,

    in case you are reading this, I'd love your take.
    I'm thiking of trying the simplified methylation protocol.
    What are the essential components? What is the monthly budget? And what is the best source for supplements.
    (I'm a huge fan of simple -- the fewer pills, powders and potions, the better.)

    My google search turned up this, from 2007:
    www.ei-resource.org/articles/chroni...atment-protocol-for-chronic-fatigue-syndrome/

    Is this still the most efficient approach?

    Also, I'm wondering if and how I would need to change my current protocol, which I believe has been helpful:

    -Vit. C: 3000 mg/day
    -Fish Oil
    -CoQ10: 200 mg /day
    -Vit. D: 3000 IU/day
    -Half scoop of Teitelbaum's daily powder
    -Weekly IM injctions (Dr. Enlander's formula) with Kutapressin, Magnesium Sulphate, Folic Acid, B12, Calphosan, Glutathione, Trace elements


    Many thanks for any and all advice.
  12. Jenny

    Jenny Senior Member

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    Thanks Rich. However, I did the methylation protocol for 18 months with no change in these symptoms.

    Jenny
  13. richvank

    richvank Senior Member

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    Hi, Jenny.

    Yes, I recall that. Have you looked into the possibility that your body might be low in some of the nutrients needed as cofactors or feed material for the methylation cycle and associated pathways? Such as vitamins B2, B3, and B6, zinc, magnesium, manganese, selenium, methionine, serine, glycine and cysteine? Another possibility is blocking of enzymes by heavy metals, such as mercury. I think that something must be preventing your methylation cycle from coming up to normal.

    Best regards,

    Rich
  14. monobear

    monobear

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    Thanks Rich. I am also considering which order to start the supplements- am considering starting with the multivit to try to build up some potassium before I start all the B12. But I really have no idea what I'm doing, so any and all advice is welcome!

    Also recently found out I tested positive for the A1298C gene mutation. Anyone know what that means/implications for the protocol? Doubly interested as I am also X+.... interesting for future implications perhaps?
  15. richvank

    richvank Senior Member

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    Hi, monobear.

    I think that starting with the multi is a good idea, especially if you think you might be low in some of the essential nutrients.

    The MTHFR A1298C polymorphism can affect the production of tetrahydrobiopterin (BH4). BH4 is needed by the nitric oxide synthase reactions, the reaction that converts phenylalanine to tyrosine, and the reactions that produce certain neurotransmitters (serotonin, dopamine, noreprinephrine) and epinephrine.

    It gets kind of complex, because the effect of this polymorphism depends on whether other polymorphisms are present, and whether bacterial infections are also present.

    Dr. Amy Yasko has written about all of this in her books and on her internet forum. Some PWMEs/PWCs follow her complete treatment program. Because of its cost and complexity, I extracted the essence of step 2 of her program and have called it the Simplified Treatment Approach. Many PWMEs/PWCs have found it more feasible, given their situations, and have found that it benefits them. I suggest trying the simplified approach first, to see if it helps. If you want to consider getting more deeply into the full Yasko protocol, I suggest getting a copy of Dr. Yasko's book, "Autism: Pathways to Recovery," and joining her internet forum at www.ch3nutrigenomics.com This forum now has over 11,000 members. The more experienced people help those who are new there, and Dr. Yasko also responds to some questions. There is a section of the forum called "Parents and Adults," and that's where PWMEs/PWCs post. There is also a Yahoo group devoted to both these treatments for ME/CFS. It can be found at http://health.groups.yahoo.com/group/CFS_Yasko/

    Best regards,

    Rich
  16. Jenny

    Jenny Senior Member

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    Thanks Rich - I've been taking all these for years (with the exception of manganese, and of methione at the moment because I'm on sertraline). I had all my 18 amalgams removed 2 years ago and have just started the Cutler chelation protocol.

    Best wishes

    Jenny
  17. richvank

    richvank Senior Member

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    O.K., Jenny. Hopefully the mercury detox will pay off for you. Manganese is important for supporting the mitochondrial superoxide dismutase (SOD2) reaction, which helps to control oxidative stress there, and also the glutamine synthase reaction in the brain (which is important for recycling glutamate to glutamine and back again).

    Best regards,

    Rich
  18. monobear

    monobear

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    Hi Rich and everyone,

    I just received my supplements today and will be starting the protocol this weekend. I'm very nervous but also excited! One thing though- I accidentally ordered the IntrinsicB12/folate instead of the Actifolate (note- since the protocol is no longer up on cfs research, you might want to update the protocol that Cort has up in the PR treatment section). Anyways, I'm now concerned I won't be getting the Folinic acid and other stuff the Actifolate has. Is this a big problem as I start out? If so, any recommendations for a folinic acid supplement I can just purchase at a local health foods store, without having to order a new batch of Actifolate? (money is tight!). Dosage suggestions for the folinic acid? I don't want to mess this up right out of the gate by taking a wrong combo of supplements that ends up doing more harm than good. All suggestions and advice are much appreciated as I start this. Thank you in advance!
  19. monobear

    monobear

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    Well, I decided to just order the ACtifolate. Better to go witH the right one from the start- I figure there's going to be enough complications for a while as is, no need to mess it up now. So to be clear- the protocol calls for both the Folapro and the Actifolate?
  20. Joopiter76

    Joopiter76 Senior Member

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    yes you need both or you take megafolinic for pure folinic acid. (but only starting with 1/8) Nucleotides are very imortant, they are available as a singel supplement or included in the general multi from Yasko but I think the amount of the nucleotides is too low. To check this you should have a look at the uric acid if its low or at the bottom end of the range you probably produce to less nucleotides or have a molybdenum deficiency. Take care not urea its the acid thats important for that.
    good look. It was the best thing I did.

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