Discussion in 'Fibromyalgia Main Forum' started by Perrier, Jan 15, 2011.

  1. Perrier

    Perrier New Member

    Here's a puzzle: my dughter was diagnosed with CFS. Years later it was borderline Lyme.
    Which is it really? No high titters for viruses and the Lyme test showed five bands.

    Any thoughts
  2. karynwolfe

    karynwolfe New Member

    You'd be surprised how often that happens. Find a Lyme Literate Medical Doctor and treat the Lyme; if she gets better, well...![This Message was Edited on 01/15/2011]
  3. richvank

    richvank New Member

    Hi, Perrier.

    I have proposed the hypothesis that people who are genomically susceptible to developing a partial methylation cycle block can develop CFS if they first have Lyme disease. The reason is that Borrelia burgdorferi bacteria have been found to deplete glutathione, and glutathione depletion (from a variety of causes) appears to be the entry point for CFS for most PWCs. In this situation, I have suggested that it is necessary to treat both the Lyme disease and the partial methylation cycle block. Some of the physicians who treat Lyme disease are now doing this, and I have had positive feedback from a couple of them. I have suggested that this could help to explain what is variously known as "chronic Lyme disease" and "post-Lyme disease syndrome."

    My poster paper on this topic is available at by clicking on CFS/M.E. and then on my name.

    Best regards,

  4. victoria

    victoria New Member

    if one had an ongoing viral infection (&/or unknown bacterial infection) and partial methylation cycle block, causing CFS, thus opening the door to Lyme later, would also be possible?
  5. richvank

    richvank New Member

    Hi, Victoria.

    That does seem possible to me, based on the known immune suppression that occurs in CFS.

    Best regards,

  6. Nanie46

    Nanie46 Moderator


    I agree that it would be best to find a Lyme literate MD and treat the lyme.

    She should also be evaluated for common coinfections like Babesia (overwhelming fatigue), Bartonella and Ehrlichia, etc.

    Most people do not have just lyme.

    Many people who first had CFS or FM diagnoses later found out that the cause of their illness was lyme and related coinfections.

    Five bands are significant. Was that an Igenex western blot or a regular lab?

    I have not heard of "borderline lyme". Sounds like maybe a non-lyme literate Dr said that.

    I urge you to go to on flash discussion....sign up for on the "Seeking a Doctor" board.....create a post asking for a LLMD in your state.

    Then click on the "Medical Questions" posts and post your questions. Use the search feature to search topics.

    There are many intelligent and helpful people there and it is a fast moving board.

    Here is some info to read. I can point you to much more if you would like.

    Since the only way your daughter may actually recover is to treat the cause(s) of her illness, I really urge you to find a LLMD.

  7. karynwolfe

    karynwolfe New Member

    Yes, and also please be aware that Lyme disease is progressive if not treated; it doesn't just "go away on its own" like some uneducated people/physicians might have you believe.
  8. Perrier

    Perrier New Member

    I genuinely appreciate the time you folks took to help me out.

    To you Rich: does Dr. Harris /or Dr. Klinghardt address this methylation cycle block? I know some patients who went to the latter and they have not mentioned this. I must add I read your paper on Methylation and found it very convincing. But how to get out of this hell? If you know of good doctors, who might help. Please email me at: if it is not permitted to name physicians here.

    The test was Igenex which my daughter took. And 5 bands were positive. However, she also at the exact same time did a test with Neuroscience for Lyme. The doctor who was doing the testing wanted to see what two labs. would come up with.

    I showed the tests to a very prominent Lyme doctor who said: borderline Lyme.
    Of course, I started to think I was going nuts, as so often happens when trying to get help for this horrific disease.

    They symptoms are post-exertional malaise, toxic feeling, sick feeling, tachycardia, weakness,hypotension, gut issues, sleep issues.
  9. Nanie46

    Nanie46 Moderator


    It is important to know that Lyme is a clinical diagnosis....based on history, symptoms, exam, labs.

    It should not be made or excluded based solely on a lab test.

    Your daughter has 5 positive bands on her WB....and many symptoms of lyme and related coinfections.

    That is plenty of evidence to warrant seeing a LLMD.

    An ILADS trained LLMD will be able to also evaluate her for coinfections.

    Many people have multiple infectious pathogens... bacteria, parasites (and there are many kinds of these), viruses, fungal infections, etc.

    Often, lyme can be at the forefront of these infections...allowing other infections to flourish too.

    Post exertional malaise can be associated with Babesia (a protozoan infection often found with lyme).

    See the symptom list on pages 9-11 and the coinfection info on pages 22-27...

    I urge you to go to and find a LLMD for your daughter. It could mean the difference between getting better or not.

  10. richvank

    richvank New Member

    Hi, Perrier.

    I think Dr. Harris does deal with methylation. I interacted with him concerning one of his patients, who had tested positively for the partial methylation cycle block. Dr. Harris was one of the physicians who mentioned methylation in their individual chapters in the book by Connie Strasheim about insights into the treatment of Lyme disease. So he's definitely aware of it. Whether he tests all his patients for it, I don't know.

    Dr. Klinghardt believes in the importance of methylation, but he reports that has found that many of his patients have KPU (HPU), which causes depletion of several vitamins and minerals, including B6, zinc, manganese, biotin and others. Some of these are important cofactors for enzymes in the methylation cycle and related pathways. I think his approach is to test for and treat HPU if present, using a combined supplement called "Core," and apparently this helps the methylation cycle, in his experience.

    The doctors at Gordon Medical Associates in Santa Rosa, CA, are very much aware of the methylation issue, and they do treat Lyme disease as well.

    Best regards,

  11. Perrier

    Perrier New Member

    My daughter had the worst possible results for the KPU/HPU six months ago; now she is taking four Core and in December she redid the test and now the KPU/HPU are in the normal range. However, the clinical presentation has not changed.

    Is there an email where I might reach you?

    I did note that Harris mentions methylation in Strasheim"s book. This is why I asked if he is active in this investigation. Also, it is not clear to me if these LYme doctors understand CFS as well as say Bell and Cheney.

    Thanks for you generous time.
    [This Message was Edited on 01/18/2011]