Methylation moving up on the CureTogether CFS treatment ratings

Discussion in 'Fibromyalgia Main Forum' started by richvank, Dec 24, 2010.

  1. richvank

    richvank New Member

    Hi, all.

    Methylation treatments have now moved up to 15th position on the CureTogether
    CFS treatment effectiveness ranking out of 95 treatments listed. Low-dose naltrexone is in tenth position.

    This is like a horse race! :)-)

    I encourage everyone to take the survey there, and report your results with the various treatments, good, bad or in between. I think this could be very helpful to others.

    Best regards,

  2. AuntTammie

    AuntTammie New Member

    I just tried to take it and it will let me mark things I have tired, but the actual ratings part is not working.

    btw I am one for whom LDN's overall long term effects made things substantially worse......I wonder how long people have used it if they are marking it as helpful....for me, it initially did seem to bring improvements, and over time it still did help with pain & sleep, but it made the fatigue, nausea, and a bunch of other symptoms so bad I have stopped taking it....and it was making me literally sleep for days at a time non-stop ( as long as 58 hrs)
  3. richvank

    richvank New Member

    Hi, Aunt Tammie.

    I'm sorry to hear that LDN didn't work for you over the longer term.

    I checked with CureTogether, and the response was that the ratings are operating normally. They also asked me to check whether or not you were signed in to the site. That is required before a person can enter their ratings.

    Best regards (and I hope you will have as Merry a Christmas as you can),

  4. mbofov

    mbofov Active Member

    Rich - How do you reckon it's in 15th place? By reading the sheer numbers attached to each item, something like 59 or so "treatments" scored higher than methylation protocol. Maybe I'm misreading it? I would like your numbers to be correct, but don't know how you got there.

    For what it's worth, I don't consider taking frequent short rest breaks a "treatment" - it's just an adaptation to an impossible situation. It does not help cure CFS. Everyone, healthy or not, has an energy threshold and has to stay within that threshold, or else have unpleasant consequences. People with CFS have a much lower threshold than others and face much more unpleasant consequences if they cross that threshold. I know this has nothing to do with you, I'm just ranting. It's listed as a "treatment" as if it will help make you better, when it doesn't.

    Anyways, could you explain the 15th place ranking?


  5. richvank

    richvank New Member

    Hi, Mary.

    It's sort of like watching a horse race. As additional people post their ratings of the various treatments, the relative rankings change. You're right, methylation treatments took a big nosedive after my post here. I've been encouraging more people to post their results there. Some more people ranked it, and noted that there are detox symptoms. When I last looked at it, 6 people had ranked it, and it had dropped considerably. Now 3 more people have ranked it, for a total of nine, and it has risen up to ninth place. I think that after a few more people have ranked it, it will probably settle into a more stable position, and be less volatile. Also, the results will be more meaningful, the more people report in.

    I agree that resting is not a curative treatment, but then we don't have treatments yet that are curative for every PWC. There are limitations to an informal survey like this, where anyone is free to post, and people may post who don't really meet the diagnostic criteria for CFS, but think they have it. We should not view this as a formal epidemiological study, but I think it can give us some indications of what people are using and what seems to help.

    Best regards,

  6. mbofov

    mbofov Active Member

    Now I get. I was counting the number of "treatments" which had more responders and thought that was how they were ranked. But it's just in the order they appear there, methylation is 9th on the list.

    Well, I'm really glad to see methylation doing so well. It is the one thing I think that has helped me the most. I'll go give my feedback.

    Happy holidays!

  7. AuntTammie

    AuntTammie New Member

    Thanks for checking with the site for me......I did finally get it to work.

    I hope that you had a nice Christmas!
  8. richvank

    richvank New Member

    Hi, Mary and Aunt Tammie.

    Thanks! I see that methylation treatments have now risen to 6th position on the survey. There have also been surveys on these treatments at CFSMExperimental and on Phoenix Rising. It's difficult to compare them, because of different comment options, but generally speaking they all seem to be saying that there have been quite a few positive responses, though the treatments haven't helped everyone who has tried them, and some people have had difficulty tolerating the detox symptoms that occur early in the treatment and may continue for quite a while.

    Best regards,

  9. cph13

    cph13 Member

    am a participant of your me/cfs meth. site as well. I tried to post something today. I don't see it on the site. Thankfully, I copied it to do I get this to you or your associates to view. I know U must be overwhelmed. I've been following you and your meth. concept for years here at pro health. I really need someone to take a look at my problem with serum amino's and Sam E.
    I don't want to repost and make a nuisance of myself if it's somewhere and I just can't find it.
    Thanking you in advance for your assistance.
  10. richvank

    richvank New Member

    Hi, cph13.

    I don't see your post on the me/cfs methylation site.

    You could try posting it here, or in the methylation section on the Phoenix Rising forum, or to the yahoo cfs_yasko group. Those are the ones I read regularly these days.

    Best regards,

  11. cph13

    cph13 Member

    I have posted this twice on me/cfs methylation site. It seems posts are reviewed before posted. Anyway here is a situation; perhaps U can calm my nerves with your knowledge.
    I am scheduled to see Enlander Thursday but I may change that....and go back to Sue in NY.
    I saw the entire post on taurine on the me/cfs methylation site.....over my head...brain fog as been horrible...tomorrow morning those posts may look differently to me NOW???????? I hope this is NOT too unfocused.
    Below is the posts I tried to put on the other site OK here we go....

    Please forgive me if I am in the wrong place or if this is tooooooo OT. I am tired of trying to figure this out. PCP has no clue nor time. I am out of time and lots of brain fog from reading so what have I done to myself???? Or am I just being frightened by numbers.
    Diagnosed with fibromyositis in 1988 put at bay with 2mg of valium. Than diagnosed with EBV, CFS, Fibro between 90 and 1995. Living with it on wellbutrin and taking vitamins. Off Wellbutrin after 5 years of insomnia. Wonderful………. had a MAJOR fibro attack in Philadelphia. I remembered a Dr. Levine (not Sue) from a friend who was a fibro spec.. He insisted on Klonepin for my Horrid insomnia. Wham! it worked and I've been sleeping. Back in 1997 I was approved for disability for my conditions. In 2006 I used Chantix to stop smoking. Messed with my gut and Also screwed up my neuro t's. I'm steal dealin' with it...In Dec.,2008 broke my humerus and chose to start Sam E for healing (read about sam E from Rich on original pro health board) Orthopedic was impressed with healing.....lost my quit in 2010, again, back on Chantix. Off chantix in Nov. 2010. Back in the bad black place so I decided to have my amino's checked I was on 800mg of Sam E since 08...
    serum amino was fine in 08 except for tryptophan. Because of the Black place I decided to UP the Sam E to 1600mg after my serum amino a results (that took 2 1/2 weeks). I just could not wait any longer for relief.
    Pre 1600 mg of Sam E:
    Serum Aminos:....Taurine 298, Ornithing 147, Aspartic Acid 24,Glutamic Acid 130 All high
    Arginine 23, Hydroxyproline 0,all low tyrosine borderline 58
    K-4, Glyco A2C between 5 fasting 6 non
    glucose 102fasting 119 non
    I take b12, b complex and extra folic....I've upt the b's to 2 a day and am taking extra folic. Homocysteine is creeping up to 8.7 (which is usually around 5) and CRP (infamation) is just that at 1.5 creeped up too. I want to present as full of a pic as I can...the only other thing that I started NEW was RYRice for cholestrol. My Alt was at 51 but fasting came back normal so I imagine the RYR is the culprit however, I am going for a sonogram for fatty live JIC
    My CONCERNs are the aminos....pre metabolic syndrome I can deal with (Iget it) My K was low.t
    Taurine off the charts, I don't have a clue. everything else is now OVERWHELming to me.
    I don't expect a diagnosis just some intelligent direction and NOT "go see a clinical nutritionist, please" What are the dangers...seem very misunderstood this taurine on Dr. Google.
    Any info would be grreatly appreciated. Rich I have been following your work forever....once over my head...I am now slowly trying to understand some of it.

    I did see Sue Levine back in 1995. She put me on lyrica way back in 1995 and got upset that I only took it in the evening as a sleep med....
    I don't like doin' off label and something so very new. I would rather struggle with vitamins, herbs etc than go back to that bad place with AD's etc. Go figure, I was always worried about my liver. HA!
    thanks guys, please don't throw me to the dogs cause I'm in the wrong place. Gratefully appreciate Any and all COMMENTS cph13 from pro health aka Carol
    Healthy, Happy New Year to all
  12. richvank

    richvank New Member

    Hi, Carol.

    I'm sorry to hear what you are going through, and that you have been ill for such a long time.

    I need to say up front that, as I think you know, I am a researcher, not a licensed physician, and I cannot give individual treatment advice unless a physician is on board to review my suggestions in the light of what they know of the particular case. I can give you some general information, but when it comes to treatment decisions, I urge you to work with a physician.

    You didn't mention experiencing fatigue, but you did mention having received a CFS diagnosis between 1990 and 1995. Given this, I would suggest that you ask your physician to order the Health Diagnostics and Research Institute methylation pathways panel. Contact info for this is attached below, as well as interpretive comments for the panel results. If it turns out from this panel that you have a partial methylation cycle block, then a supplement-based treatment protocol for this can be found at www dot cfsresearch dot com by clicking on CFS/M.E. and then on my name. Again, a physician should be involved if you are doing this type of treatment.

    It sounds as though the main issues that are troubling you involve abnormalities in the neurotransmitter levels. These are very much impacted by a partial methylation cycle block, so if it turns out that you do have such a block, this treatment protocol could bring you benefit.

    If it turns out that you don't have such a partial block, then the next approach I would suggest you consider is an orthomolecular approach to normalize the neurotransmitter levels.

    Conventional physicians and psychiatrists usually don't attempt to measure these levels, but based on symptoms, they prescribe various drugs, often trying one after another to see which one seems to give the best relief of symptoms without side effects that are too severe. These drugs are not designed to cure the fundamental problem, but only to treat symptoms.

    You mentioned that you would prefer to use nutritional supplements and herbs rather than take antidepressant drugs. In view of this, if you turn out not to have a partial methylation cycle block, I would suggest that you and your physician consider treatment using nutritional supplements to correct the neurotransmitter imbalances. To do this, you would need to get an estimate of which neurotransmitters are at abnormal levels. In cases of depression, usually one or more of the neurotransmitters are low.

    There is a controversy about whether measurements of neurotransmitters in the blood or urine are representative of their levels in the brain. The reason is that the intestine also makes neurotransmitters, and most of what is in the blood or urine comes from that source. However, there are also researchers and clinicians who report that they find good agreement between these measured values and what they observe clinically, including patient reports of symptoms. There are some specialty labs that offer tests of neurotransmitter levels. One of them is at www dot neurorelief dot com and another is the Sanesco lab. There may also be others, but those are the ones I'm familiar with.

    Other researchers and clinicians report that they can get a good estimate of which neurotransmitters are low by giving patients simple quizzes. Two places you can find these are in the book "The Mood Cure" by Julia Ross, and the book "The Ultra-mind Solution," by Mark Hyman. Based on the results of these quizzes, these practitioners suggest supplements to take, mainly selected amino acids. These books are not very expensive, and are available from Amazon.

    I'm hopeful that one or the other of these approaches will help you, and I hope that 2011 turns out to be a very good year for you.

    Best regards,


    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 requires an order from a physician or a chiropractor. The best way to order the panel is by fax, on a clinician’s letterhead.

    Available from:

    Health Diagnostics and Research Institute
    540 Bordentown Avenue, Suite 4930
    South Amboy, NJ 08879
    Phone: (732) 721-1234
    Fax: (732) 525-3288

    Lab Director: Elizabeth Valentine, M.D.

    Dr. Tapan Audhya, Ph.D., is willing to help clinicians with interpretation of the panel by phone, or you can use the comments below:

    Interpretation of the Health Diagnostics and Research Institute
    Methylation Pathways Panel

    Rich Van Konynenburg, Ph.D.

    Several people have asked for help in interpreting the results of
    their Health Diagnostics and Research Institute 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., at the Health Diagnostics and Research Institute.

    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. Audhya, 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
    these measurements.

    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 likely 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 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 is 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 many biochemical reactions depend on it for their methyl
    groups. A low value for SAM represents low methylation capacity, and
    in CFS, it appears to result from a partial block at the enzyme methionine
    synthase. Many of the abnormalities in CFS can be tied to 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
    methylation capacity.

    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. Many 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 with toxin buildup.

    10-Formyl-THF: This is a measure of the concentration of 10-formyl
    tetrahydrofolate in the blood plasma. It is usually on the low side 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 value on the low side. 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. In PWCs 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 normally 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 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.

    [This Message was Edited on 12/31/2010]
    [This Message was Edited on 12/31/2010]
  13. honolulu13

    honolulu13 New Member

    I noticed that you commented on the Sanesco testing. I have complete the test almost 2 months ago and have been using their products for a month now and I feel fantastic. It was a rough and bumpy road, but now I feel like there is hope. For a year I was symptomatic and my symptoms started getting progressively worse over time. I stated having migraines, chronic fatigue, memory loss, muscle weakness, brain fog, numbness in my fingers, depression, anxiety, dizzy spells and gained 40 lbs in a year....just to name a few. The fatigue was so bad, it was hard to get through the day. Taking a shower and putting clothes on would wear me out. I was diagnosed with hypothyroidism, adrenal fatigue, and possible PCOS. My neurotransmitters were out of wack, what a difference these products make. I agree they are costly but well worth the money. Think about what the average person spends on prescription drugs, the bad side effects associated with them and only to gain new problems. With Sanesco, it addresses the problem, getting to the root of the cause and doesn't just cover up and treat the symptoms.
  14. IanH

    IanH Active Member

    Aside from the following all others are within the deviation for placebo effect i.e more than 50% had no benefit or worse.

    take short frequent breaks
    Diet changes
    Pesonal development
    Eliminate sugar
    Gluten free diet
    Change Job
    Spentime in low stim ulation environment
    Low dose naltrexone
    (methylation treatment and thyroid hormone are borderline)

    Interestingly none of the above are supplementation treatments aside from the methylation protocol. Also many of the treatments are treating individual symptoms rather than the syndrome as a whole so cannot be compared as "treatments" to the prophylactic treatments such as "eating more fruit and vegetables" and vitamin D. This makes nonesense of the category "% reporting major improvement". It needs more data to be meaningful.
  15. richvank

    richvank New Member

    Hi, honolulu13.

    Thanks for posting about your success with this testing and these products. I'm glad to hear that they helped you so much. I would be interested to know which specific products helped you.

    Best regards,

  16. Alyssa-Admin

    Alyssa-Admin Active Member

    I am bumping this up, because although Dr Rich is no longer with us, methylation and dysbiosis seem to be a very important topic to bring back. A.
  17. RadioFM

    RadioFM Active Member

    Rich was a brilliant man with a openness to new ideas. He was a master at lab interruption and his understanding of how the body works was very inspiring. Thank you for bring back his great informative posts.

    Please review this related info below:

    Last edited: Feb 24, 2015

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