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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)
    25.6%
  3. Minor improvement

    22 vote(s)
    28.2%
  4. No change

    21 vote(s)
    26.9%
  5. Minor crash

    2 vote(s)
    2.6%
  6. Moderate crash

    0 vote(s)
    0.0%
  7. Major crash

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

    11 vote(s)
    14.1%
  1. Cort

    Cort Phoenix Rising Founder

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    If you have tried Rich's Simplified Methylation Protocol please take the poll

    (This poll was created by Caledonia. after a glitch in the first poll showed up, we shut that down and recreated it here - sorry about the problems.).

    In your comments afterwards you might want to state how long you were on the protocol.
  2. 2bushes

    2bushes Guest

    I am om the program now and have slowly worked up to the full protocol every other day. I would call this a major detox rather than a crash that is going on. Everything is coming out hot. I am very tired. My eyes burn and have a lot of little crystals and they are gluey feeling. I hope to have a blood draw next week. The lab was moving and my first draw got mixed up and I had started so I kept going. The first CFS doc I saw told me oxidative stress andautointoxifacation. I must have made progrtess and it was all building up again...for what reason...could a virus to that?

    Margaret
  3. August59

    August59 Daughters High School Graduation

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    Actifolate has Folapro in it. Is it the ratio between them that requires the purchase of both of them?
  4. ukme

    ukme Senior Member

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    Have only receently started it so can't comment yet, just taking the multivitamin so far, but would like to know what would be the best order to introduce the other supps.
  5. Sunday

    Sunday Senior Member

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    I noticed that this poll doesn't include the "moderate improvement" category on Freddd's poll. Is there a reason for that?
    grower likes this.
  6. richvank

    richvank Senior Member

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    Hi, August59.

    FolaPro is the main form of folate used in this protocol, because it is the form of folate that is directly used by the enzyme methionine synthase, which is partially blocked in CFS. Actifolate is used because it contains folinic acid, which is convertable to other forms of folate and will help to support other roles of folate, such as synthesis of DNA and RNA, until the methylation cycle comes back up to normal and the folate metabolism is also restored to normal. I am not aware of any studies that have determined the optimum ratio of these forms of folate. It would be wonderful if such studies would be done, but we currently have to operate to a large degree on the basis of biochemical theory. In the DAN! program for treating autism, folinic acid is emphasized. In the Vinitsky protocol, ordinary folic acid is used in large dosages. Amy Yasko pioneered the use of FolaPro together with folinic acid and folic acid in treating autism and other neurological disorders, as far as I know. There is a medical food called Deplin which contains a large dosage of methylfolate, as in FolaPro, and is used for treating depression.

    Best regards,

    Rich
  7. richvank

    richvank Senior Member

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    Hi, ukme.

    I usually suggest starting with the multi, then adding the phos. serine complex, then the sublingual hydroxocobalamin, and then starting with very small dosages of the folates and working up. The reason for this is to deal with possible nutritional deficiencies and the need for cofactors before directly stimulating the methylation cycle, and then starting slowly with that to avoid major die-off and detox symptoms.

    Best regards,

    Rich
  8. richvank

    richvank Senior Member

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    Hi, Margaret.

    I'm not entirely sure, but if your methylation cycle had not fully recovered in the past and your glutathione level was not up to normal, I think it's possible that your detox system was not working properly, and thus toxins to which you were exposed (as we all are every day) built up slowly over time. I think it's possible that an ongoing viral infection could have caused depletion of glutathione and could have induced a partial methylation cycle block. There is a whole variety of stressors that can place demands on glutathione.

    From what you have reported, it sounds as though your detox system is now working on a backlog and is mobilizing and excreting things that have built up over time. Hopefully this will pay off for you in terms of better health over time.

    Best regards,

    Rich
  9. Dreambirdie

    Dreambirdie work in progress

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    Hi Rich--

    On another thread we were discussing the Detoxification Profile--which I realized I cannot possibly consider, due to severe reactions that I have to caffeine, aspirin and acetominophen.

    Does the Methylation Panel require ingestion of toxic substances (such as the above)? And will it tell me enough alone, w/o the Detox Profile? And is that lab FINALLY ready to do that test?

    Thanks in advance. You are much appreciated.
  10. dmholmes

    dmholmes Senior Member

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    The methylation panel does not require anything but a blood draw.
  11. richvank

    richvank Senior Member

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    Hi, Dreambirdie.

    What David wrote is true: just a blood draw, nothing that you have to take.

    I would say that Vitamin Diagnostics is very close to being back in full operation. I spoke to Dr. Audhya by phone last week, and he said that the New Jersey state inspector was requiring a mass calibration on their new mass spectrometer, and was not accepting the factory calibration. So they had to order some standard compounds for that, which took two weeks to get, and that they were now running them and would send the results to the inspector. Hopefully, this is the last thing that will be required. I have samples in the queue myself, and will be very happy when they are up to speed again.

    Rich
  12. caledonia

    caledonia

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    I'd say the reason is Cort spacing out when he redid the poll from my original. I'll give him a shout and see if he can fix it.
  13. 2bushes

    2bushes Guest

    Hi Rich,

    Thanks that is what I was hoping to hear! Not fun at times but I am sticking to it. I will call the lab tomorrow and see if and when they will be ready to run the panel. I heard they were waiting for a part and then had to test. I am anxious to see what the panel will show. I started the protocol the last week of September.

    Margaret
  14. JanisB

    JanisB Senior Member

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    My results on the Vit Diag methylation panel improved in 3 months but I did not experience a significant decrease in symptoms or increase in energy. By the end of 8 months, I was definitely sleeping better.
  15. 2bushes

    2bushes Guest

    Hi Rich,

    Thanks for the information, I think that could be what is happening. I am having a lot of body wide pain, and my therapist said I was find of puffy and he thought toxins had been released. I have been with him since 94 so he knows my body better than I do.

    Margaret
  16. juancduran

    juancduran Guest

    Hi,Rich,

    I have had CFS for about 30 years (I am 54). I have been following your protocol for 11 weeks. I am taking the exact doses you recommend of each supplement. So far, I have not felt any improvement in energy or other symptoms. I have had what I believe are detox symptoms: very strong headaches, which are abating lately (I suffer from headaches from time to time but they became a daily occurrence since starting the protocol), and some anxiety in the last couple of weeks.

    I have a question for you: do you think I should stay with the protocol for some more time? Or is 11 weeks a long enough trial period? In the paper describing the results of your clinical trial, you say that improvements should be seen in 8 weeks at the most.

    Your approach makes sense to me but I am a bit discouraged by the lack of any tangible improvement. I would very much appreciate you advice.

    Best regards,

    Juan
  17. richvank

    richvank Senior Member

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    To Juan and others who have not experienced benefit

    Hi, Juan and the group.

    I am very interested in cases in which this treatment does not start bringing benefit after two or three months, and I want to understand why, because my goal is to help everyone with CFS to recover. Based on cases I've studied so far in which there has not been improvement after this amount of time, here are some possibilities:

    1. The person did not have a partial methylation cycle block. Based on the testing that has been done so far, the vast majority of people who satisfy the diagnostic criteria for CFS do have a partial methylation cycle block, but the CFS population is heterogeneous, and there may be some that do not have such a partial block. I encourage people to run the Vitamin Diagnostics methylation pathways panel to find out for sure, and by the way, they are back up and running now. I just received a new report from someone yesterday.

    2. The person has been ill for a long time, and their body has thus accumulated large burdens of toxins and/or infections. This may be true in your case, Juan, because 30 years is a long time to be accumulating toxins and pathogens, which is what happens when the detox system and the immune system are dysfunctional, as in CFS. In these cases, it may take more time, or it may be necessary to specifically treat to remove toxins or to knock down infections before the methylation cycle will come back up. Some of the heavy metals can block enzymes in the methylation cycle and related pathways. Some of the pathogens can hold glutathione down (Lyme disease and mold illness are two examples.)

    3. The person may have deficiencies or insufficiencies in one or more of the esssential nutrients that serve as cofactors for this part of the metabolism. Those who have HPU will fit into this category. The important cofactors are other B-vitamins beside B12 and folate, especially B2, B3 and B6, and minerals including magnesium, zinc, manganese, selenium, and copper. These can be tested for and supplemented if low.

    4. The person may be low in amino acids, either because their gut is not able to digest protein and absorb amino acids well, or because their cells are burning amino acids for fuel at higher rates than normal, or both. Many people with CFS have intestinal dysbiosis, and many have a partial block early in their Krebs cycle that prevents effective use of carbohydrates and fats for fuel. Amino acids levels can be tested, and supplementation with free-form essential amino acids may help this.

    5. The digestive system may be in such poor functional condition that it is not able to absorb the nutrients needed. Efforts can be made to correct this condition using things like betaine-HCl, digestive enyzmes, antimicrobials and probiotics. In extreme cases, intravenous nutrition may be needed.

    These are the impediments I've found so far. If there are nonresponding cases in which none of these seem to fit, I would be interested to know more details about them. My email address is richvank at aol dot com.

    Thank you for your input.

    Best regards,

    Rich
  18. Vegas

    Vegas Senior Member

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    Side Effects to Methylation Protocol

    A couple of questions for anyone with knowledge or experience with this Protocol. First, when would someone likely first experience symptoms after initiating a methylation protocol--adverse or otherwise? I seemed to tolerate the Neurological Health supplement without problem, and I've never had a problem with Phosphatidylserine, but I think the folapro/Hydrocobalamin may be kicking in. I didn't notice much for the first several days, but by day three I'm getting an internal trembling sensation, sort of like a mild stimulant feeling. Also, it seems like I'm getting more than usual recruitment of the sympathetic nervous system because my hands ice cold all day long. The trembling/shaky sensation is reminiscent of a milder version of when I take D-Ribose. The Ribose causes some trembing, but what also feels like a major accelleration of my metabolism with intense sweating and hunger. Any thoughts on some symptoms observed and what to expect when starting this protocol would be useful. Thanks!
  19. richvank

    richvank Senior Member

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    Hi, Vegas.

    Here is an excerpt from the poster paper describing the treatment study that Dr. Nathan and I carried out with 30 women in his practice:

    "Various patients reported some early exacerbation of symptoms, which in most cases was followed by a greater improvement in symptoms. Three of the patients found it necessary to decrease their dosage frequency to every second or third day for several days, until they could tolerate the full daily dosage schedule.

    "Sixteen of 30 patients (53%) reported an initial worsening of symptoms, beginning in most of these cases within 3 or 4 days, but in some cases beginning at up to 2 weeks. Most of the symptoms were mild, and none of the patients discontinued usage of the supplements during the first 3 months. The most common side effects were gastrointestinal (pain, cramps, constipation, or diarrhea), reported by 6 out of 30 patients or 20%; increase in pain, reported by 4 out of 30 or 13%; and increase in fatigue, reported by 3 out of 30 or 10%. Other symptoms, reported by one patient each, were a decrease in appetite, poor sleep, weak legs, flu-like symptoms, and an increase in anxiety and depression.

    "For those who experienced improvement, the time to self-reported improvement on the protocol was an average of 5.6 weeks, with a range from immediate improvement (which was rare) to as long as 8 weeks before improvement was experienced."

    In addition, here's a collection of things that were reported by people who were the first to try this treatment, excerpted from an article I wrote on July 18, 2007. I'm including the good, the bad and the "ugly," so that you can get the complete picture:


    "The following symptoms of CFS have been reported to have been corrected by various PWCs on this treatment. Note that these are gathered from reports from many PWCs, so that not all have been reported by a single person.

    1. Improvement in sleep (though a few have reported increased difficulty in sleeping initially).
    2. Ending of the need for and intolerance of continued thyroid hormone supplementation.
    3. Termination of excessive urination and night-time urination.
    4. Restoration of normal body temperature from lower values.
    5. Restoration of normal blood pressure from lower values.
    6. Initiation of attack by immune system on longstanding infections.
    7. Increased energy and ability to carry on higher levels of activity without post-exertional fatigue or malaise. Termination of “crashing.”
    8. Lifting of brain fog, increase in cognitive ability, return of memory.
    9. Relief from hypoglycemia symptoms
    10. Improvement in alcohol tolerance
    11. Decrease in pain (though some have experienced increases in pain temporarily, as well as increased headaches, presumably as a result of detoxing).
    12. Notice of and remarking by friends and therapists on improvements in the PWC's condition.
    13. Necessity to adjust relationship with spouse, because not as much caregiving is needed. Need to work out more balanced responsibilities in relationship in view of improved health and improved desire and ability to be assertive.
    14. Return of ability to read and retain what has been read.
    15. Return of ability to take a shower standing up.
    16. Return of ability to sit up for long times.
    17. Return of ability to drive for long distances.
    18. Improved tolerance for heat.
    18. Feeling unusually calm.
    19. Feeling "more normal and part of the world."
    20. Ability to stop steroid hormone support without experiencing problems from doing it.
    21. Lowered sensation of being under stress.
    22. Loss of excess weight.


    "The following reported symptoms, also 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


    "Finally, the responses reported below are more serious, and I would classify them as adverse effects of the treatment. This list includes all the adverse effects of which I am aware at the time of writing this article, but I suspect that as more PWCs try this treatment with the assistance of their physicians, this list will grow. I am describing these as they have been reported on the ImmuneSupport CFS discussion board by the PWCs who experienced them. Though this information may be incomplete, and cause—effect relationships are difficult to determine exactly from the available information, I’m hopeful that it will be helpful to clinicians and other PWCs:

    1. One person had had a history of severe pesticide exposure and also autonomous multi-nodular goiter, which she described as follows: “Gradually the right lobe grew to over 4 cm x 4cm, and had to have right lobe out. . . This same surgeon made the decision to leave the left lobe in, as I had always had trouble with thyroid med back then too. So, they restarted my Synthroid and I stayed on that for [a] few more years. I ALWAYS had shortness of breath and became VERY tachycardic upon ANY activity. . .” This person started the simplified treatment approach on March 21, 2007 (actually using higher dosages than suggested for FolaPro and Intrinsi/B12/folate). On May 19, she went to an emergency room with tachycardia, chest pain, trouble breathing, trouble sleeping, elevated blood pressure and fever of 100.7 F. She was admitted to the hospital and released the next day. No evidence was found for heart attack. This person later reported the following: “I followed up with my PCP and had CT scan of neck and chest and my goiter is causing tracheal compression, again, and breathing is VERY hard. . . My area hospitals can't do this surgery because my goiter grows substernal, deep in my chest.” This person has expressed a desire to continue the simplified treatment approach, but is currently exploring the possibility of first having additional surgery on the multinodular goiter.

    2. A second person had a history of lung problems due to both carbon monoxide exposure and exposure to molds, as well as heart-related symptoms. She started part of the simplified treatment approach on May 27, 2007. After having been nearly homebound for ten years, she was able to begin riding a bicycle. However, in early July, 2007, she went to an emergency room twice with severe breathing problems (shortness of breath), a fever of 99.8 to 100.1 F. that eventually lasted for sixteen days, and severe chest and left arm pain. No evidence was found for heart attack. She was diagnosed with an enlarged left atrium and diastolic dysfunction. She has currently discontinued the simplified treatment approach and is under the care of cardiologists.

    3. A third person had a history of autoimmune disease, including Sjogren’s syndrome. After her fourth dosage of combined FolaPro and Intrinsi/B12/folate, she experienced “a moderately severe autoimmune flare, with numerous joint and soft tissue issues, fatigue, pain, etc.” She also experienced a severe flare of Sjogren’s syndrome, with “very dry mouth, dry eyes, and severe eye pain.” Six days after discontinuing the supplements, she had a thorough ophthalmology workup and was diagnosed with autoimmune scleritis. She has been given topical steroids and has reported that her eyes are greatly improved.

    4. At least two persons experienced a temporary termination of peristalsis of the gut and consequent constipation after beginning the simplified treatment approach. In these two cases, induction of diarrhea cleared material from the gut, but did not restore the peristalsis. In both cases, peristalsis restarted twelve days after terminating the folate-containing supplements. One of these persons had a history of treatment with psychotropic drugs, including Klonopin. About 18 hours after starting to get relief from the constipation, she became very sick, with “vomiting, vise-like headache, and shaking.” She had many bowel movements over a ten-hour period, and then began to feel better. The other had a history of autoimmune diseases, including Sjogren’s syndrome and Autoimmune Ovaritis, as well as diastolic dysfunction. "


    The occurrence of these more serious adverse effects is one of the reasons I emphasize that people need to be under the care of a physician when doing this treatment.

    I hope this treatment will turn out to be helpful to you. If you want to read the rest of these documents, or others, you can find them at www.cfsresearch.org by clicking on CFS/M.E. and then on my name.

    Best regards,

    Rich
  20. Vegas

    Vegas Senior Member

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    Thanks for the Reply.

    We'll see how it goes from here.

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