Epstein Barr, HHV6, Chronic Fatigue, POTS

Discussion in 'Fibromyalgia Main Forum' started by thruvioleteyes, May 18, 2011.

  1. thruvioleteyes

    thruvioleteyes New Member

    I have been diagnosed with Chronic Fatigue Syndrome/ Fibromyalgia and POTS (post osterial tachycardia) I have had a lot of blood work in the last three years and some of the more alarming stuff was my elevated HHV6 (recent or current infection) and Epstein Barr (recent or current infection) I had a few other elevated levels that according to my doctors were pretty normal, "all people have that" (coxsackie B4 and C pneumonia). I look around online and it seems my levels are pretty high in comparison to others but I am not sure. I live in a smaller town and most of the doctors dont know anything about what I have and will admit it and the rest just want to give me pain killers. What do I do???
  2. sascha

    sascha Member

    and went on a course of valcyte for over 5 months. now i'm on maintenance acyclovir. i'm lucky i live close to Stanford and Dr. Montoya as i've been working with him for 4 years or so now.

    anti-viral medication has helped me. it is not the complete answer by any means, but it has lessened some cfids symptoms.

    sounds as though you need a doctor with cfids experience who could work with you and prescribe anti-virals. anyway, that's the course i took so that's my point of view. good luck- sascha
  3. thruvioleteyes

    thruvioleteyes New Member

    if you dont mind can you share your HHV6 titers with me? I am trying to gage where I am with the rest of the people who share my illness. I have very little information about my illness and when I look around online it seems to be very controversial. Thank you for telling me about doctor montoya, I actually put a call in to him yesterday.
  4. richvank

    richvank New Member

    Hi, thruvioleteyes.

    I'm sorry to hear about your situation.

    For what it's worth, I believe that the reason for the elevated activity in CFS of these herpes-family viruses as well as other viruses and intracellular bacteria such as Chlamydia that are normally present in the latent state in many or most of the general population is that the cell-mediated immune response is dysfunctional.

    Treatment with antiviral drugs and antibiotics can be helpful to a degree, but it is important to get the immune system functioning normally again in order to keep these pathogens suppressed. Otherwise, they will likely become activated again.

    I believe that the immune dysfunction, the POTS, and the other unpleasant features of CFS can all be traced back to a root problem in CFS, and that is a vicious circle mechanism that also keeps this disorder chronically present. This mechanism includes depletion of glutathione, a functional deficiency of vitamin B12 that results from its lack of sufficient protection because of the depleted glutathione, a partial block in the enzyme methionine synthase in the methylation cycle that results from the the functional B12 deficiency, draining of folate from the cells that results from the partial block in methionine synthase, and maintenance of the glutathione depletion because of the disruption of the sulfur metabolism as a result of the partial block in methionine synthase. This last aspect is what maintains the vicious circle and keeps people with CFS chronically ill unless this vicious circle mechanism is broken.

    In my opinion, everything else that is wrong in CFS stems from this basic vicious circle mechanism.

    Fortunately there is treatment to correct this. It's a non-prescription treatment, available over the internet. There are several variants of it now in use by physicians and patients, and it generally goes by the name "methylation treatment." A particular person may respond better to one or another variant of this type of treatment. In a clinical study carried out by Dr. Neil Nathan, over two-thirds responded well to a protocol I have suggested, but as you can see from recent posts here by mbofov, she was not helped by it, and has found that a variant proposed by a man who calls himself freddd on the internet appears to be helpful for her. So it's worthwhile to consider the variants.

    I have suggested one protocol for methylation treatment (pasted below). I am not financially involved with suppliers of the supplements in this protocol. It is necessary to be monitored by a physician while on this treatment, because a small number of people have reported serious adverse effects while on it. I hope this is helpful.

    Best regards,


    March 30. 2011

    IN CHRONIC FATIGUE SYNDROME—March 30, 2011 Revision
    Rich Van Konynenburg. Ph.D.
    (Based on the full treatment program
    developed by Amy Yasko, Ph.D., N.D.
    which is used primarily in treating autism [1])


    1. General Vitamin Neurological Health Formula [2]: Start with ¼ tablet and increase dosage as tolerated to 2 tablets daily
    2. Hydroxy B12 Mega Drops [3]: 2 drops under the tongue daily
    3. MethylMate B [4]: 3 drops under the tongue daily
    4. Folinic acid [5]: ¼ capsule daily
    5. Phosphatidyl Serine Complex [6]: 1 softgel capsule daily (or lecithin, see below)

    All these supplements can be obtained from http://www.holisticheal.com.
    The fourth supplement comes in capsules that contain 800 mcg. It will be necessary to open the capsules, dump the powder onto a flat surface, and separate it into quarters using a knife to obtain the daily dose. The powder can be taken orally with water, with or without food.
    These supplements can make some patients sleepy, so in those cases they take them at bedtime. In general, they can be taken at any time of day, with or without food.
    Phosphatidyl serine can lower cortisol levels. Patients who already have low evening cortisol levels may wish to substitute lecithin [7] (at one softgel daily) for supplement number 5 above. Lecithin is also available from http://www.holisticheal.com.
    For those allergic to soy, lecithin from other sources is available.
    GO SLOWLY. As the methylation cycle block is lifted, toxins are mobilized and processed by the body, and this can lead to an exacerbation of symptoms. IF THIS HAPPENS, try smaller doses, every other day. SLOWLY work up to the full dosages.
    Although this treatment approach consists only of nonprescription nutritional supplements, a few patients have reported adverse effects while on it. Therefore, it is necessary that patients be supervised by physicians while receiving this treatment.

    [1] Yasko, Amy, Autism, Pathways to Recovery, Neurological Research Institute, 2009, available from http://www.holisticheal.com or Amazon.
    [2] General Vitamin Neurological Health Formula is formulated and supplied by Holistic Health Consultants LLC.
    [3] Hydroxy B12 Mega Drops is a liquid form of hydroxocobalamin (B12), supplied by Holistic Health Consultants. 2 drops is a dosage of 2,000 mcg.
    [4] MethylMate B is a liquid form of (6s)-methyltetrahydrofolate supplied by Holistic Health Consultants, based on Extrafolate S, a trademark of Gnosis S.P.A. 3 drops is a dosage of 210 mcg.
    [5] Folinic acid is 5-formyltetrahydrofolate. ¼ capsule is a dosage of 200 mcg.
    [5] Phosphatidyl Serine Complex is a product of Vitamin Discount Center. 1 softgel is a dosage of 500 mg.
    [7] Lecithin is a combination of phospholipids without phosphatidylserine. One softgel is a dosage of 1,200 mg.

  5. sascha

    sascha Member

    he has been so active and helpful on this board. i am embarrassed i haven't looked into the methylation treatment yet beyond reading about it. it is something on the edges of my awareness. maybe i will try it. i get so caught up in everything else....

    anyway. my HHV-6 titer count at first was over 10,000. Dr. Montoya said it was very high. i tested negative for EBV.

    what about your count? sascha
  6. thruvioleteyes

    thruvioleteyes New Member

    My HHV 6 is 1:320 which is a different lab than your Sascha. My EBV IGM is 1.58, EBV IGG is 2.67 and EBV EBNA IGG is 2.86