Penile implant,silicone and Methylation..Rich or anyone..

Discussion in 'Fibromyalgia Main Forum' started by kalou, Dec 25, 2011.

  1. kalou

    kalou New Member

    Hi all ,hi Rich

    I am new on board not on the reasearch...I am a 26 years old patient suffering from M.E for one year. My story is a complicated story characterized of bad luck. For years I was suffering from erectile dysfunction and I had done 3 (2 unsuccesful) surgeries to treat it. The last and final surgery was last year and they placed a penile implant made of silicone to solve the problem.My cfs symptoms started 2 months after the placement. I thought this was a sign of silicone poisoning which is something that I found that exists by accident reported from women with breast implants and major health problems.They reported serious health issues such as cfs,lupus,fibro related with their silicone implants. Silicone can be toxic to the body. So I did a test for lymphocyte silicone sensitivity from Acumen labs and Dr. John McLaren Howard and came positive but shown only mild sensitivity. Dr Myhill send me a letter noting that she can not be sure how much the implant is responsible for my cfs. I was generally in a lot of stress these last years and I was probably overtrained in the gym trying to forget my previous problem.The last few months before the surgery I noticed that I couldn t improve my fitness and actually I was losing some muscle. So I suspect that I was already in the “risk” of developing cfs.All my standard tests are normal except uric acid which is very low maybe sign of oxidative stress.I have also seen in an article of dr Steven Edelson (link below) talking about possible silicone poisoning and the free radicals that are produced as an immune reaction to silicone and deplete the antioxidant resources of the body. I am ready to start the methylation protocol but I dont know if this will benefit me since I have the penile implant inside me. Explanting the implant will mean the end for ever of my sexual life(of course now I have no life in general) and it is not sure that will help me with cfs.So there is a big dilemma.

    Does Rich or anyone have an opinion or an experience? Is the methylation protocol or Freddd's right for me?

  2. richvank

    richvank New Member

    Hi, kalou.

    I'm very sorry to hear about this distressing and frustrating situation.

    Since you reported that it appeared that you had the beginnings of your illness during heavy physical training prior to receiving the implant, I think it is possible that you had developed "overtraining syndrome," which in my view is the same disorder as ME/CFS. Since, in addition, the test showed only mild sensitivity to silicone, though I am not a physician or surgeon and cannot make the decision for you, I think that if I were in your position myself, I would probably try to treat the illness while leaving the implant in place. If that didn't work, I could still choose to have it removed later. But at least it would give a chance of preserving sexual function in the long run.

    If it is feasible for you, I would recommend running the Health Diagnostics and Research Institute methylation pathways panel to see if you do in fact have a partial methylation cycle block, and thus whether a methylation type treatment would be likely to help. This panel should also help to decide which protocol might be best for you. The panel costs $295, including the cost of the shipper to send the blood samples to the lab. Contact information and an interpretive guide are below. I hope this helps. Best regards, Rich

    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 2300
    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.

    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.

  3. Mikie

    Mikie Moderator

    Thank you for your invaluable help on our boards. Wishing a very Happy New Year.

    Love, Mikie
  4. rockgor

    rockgor Well-Known Member

    Sorry to hear of your bad luck. I retired several years ago. Looking back
    (as well as around) I have decided the most important factor in any life
    is luck.

    Glad to see that Rich could give you some helpful info. Best of luck
    to you.

  5. kalou

    kalou New Member

    Thanks Rock and for your wishes.I tend to agree with you about luck.For me my health journey is a journey of bad luck.And now with cfs i see no luck in the horizon..I looked at the older posts and i couldn t find your story to make a comment.Sorry to hear that you have retired..Maybe loosing hope is a 'protection' strategy in order not to face another disappointment and frustration..

    Thanks Rich.I was just wondering if trying to raise glutathione and unblock the methylation would bring worse immune reactions to silicone and will make me feel lot worse,since the immune system will be stronger.I am considering though to try and eliminate the silicone sensitivity either with homeopathy or bioresonance therapy..Maybe i should try this before the methylation protocol..?
    I know about the test i consider doing it too when money is available.