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Which doctor... low dose Valcyte, HPA hormonal issues?

Discussion in 'ME/CFS Doctors' started by London Rachel, Aug 8, 2015.

  1. London Rachel

    London Rachel London Rachel

    Wondering if anyone can offer any insight. I'm 6 years post RAI for Graves Disease and whilst now finally on NDT with good thyroid labs I've been left with ME. One theory is that to have had extremely low T3 levels for 3 years whilst on levothyroxing only have left the microglia so upregulated that this is what's at the root of the crisis in my body. An advisor from the States I was working with suggested trialling low-dose Valcyte as he has heard it's working well for people with CFS without the extreme side-effects of more normal Valcyte doses. I have had EBV in the past and gut issues but I believe this severe endocrine crash (when my thyroid was destroyed) and resultant disrupted hypothalmic-pituitary axis signalling is the most significant issue. I think it's pitched me into early menopause too - I'm now 46.

    I live in London, will very happily travel to see a doc but I'm just not sure who is the best one to see? I have been asking Kenny De Meirlier's office if he treats with low-dose valcyte and is experienced with hormonal and HPA signalling issues but I've heard nothing back. I've asked to join the patients of Kenny De M section here on Pheonix Rising but have heard nothing and can't get on this blog. I'm interested in Jack Kruse's information on adrenal fatigue I found on the forum here - but it would be great to hear from someone who has been treated by him and if that's indeed possible?


    Also interested in Dr Kaufman.

    Any thoughts really gratefully appreciated. Anyone with similar history had any success with a particular route. Am just finding it mind boggling to know what to try next as have been through all the CFS docs in the UK and got nowhere.
  2. Sushi

    Sushi Moderation Resource Albuquerque

    I am his patient and from my experience, you won't get a reply to such questions until you have an appointment. He just gets too many enquiries for him and his staff to handle. I doubt if he has prescribed low dose valcyte but he would certainly listen. He does work with some hormonal issues. As far as HPA signalling, he would probably feel that this would improve through treating underlying conditions.
    helen1 likes this.
  3. Daffodil

    Daffodil Senior Member

    @London Rachel ...I do not think Dr. DeMeirleir uses Valcyte usually, but if your HHV6 IgM antibodies are high, I don't see why he wouldn't.

    He is finding most of his patients are testing positive for intracellular bacterial infections so he tests for that a lot.

    In my opinion, he is the best one to see.
  4. Ecoclimber

    Ecoclimber Senior Member

    I would recommend Kaufman/Kogelnik at OMI since Kogelnik worked with Montoya who treats his patients with Valcyte. @Gingergrrl has experience with Kaufman and OMI. But it is a long way from London.

    There is an ongoing research study on Fibromyalgia at the University of Alabama with Dr. Pridgen, using anti-viral Valtrex /Famciclovir with Celebrex.

    Dr. Peterson at Incline village/Lake Tahoe CA treats his patients using anti-viral Cidofovir infusions.

    Dr. DeMeirleir is not an expert treating his patients with Valcyte.

    Best to run a panel for herpevirus infections to determine if you have high anti-bodies to HHV-6 before making the journey. Also there is research from Montoya that suggests that patients that improve on Valcyte/Valganciclovir benefited more from the immunomodulatory of Valcyte.

    There are threads on here that talk about recent doctor visits mentioned above.
  5. markyr13


    Of all the problems I've had and the dozens of therapies/meds/supplements I've tried, NOTHING has been more valuable to me than ridding myself of viruses and other infections. Until your infections are under control, none of the other treatments will truly take hold. I've tried all the oral and IV antivirals, the anti-fungals, etc.. The ABSOLUTE BEST single therapy I've ever tried was blood ozone therapy.

    I paid a good deal of money for these IV treatments until someone suggested a home ozone unit that you use rectally after a bowel movement. It sounds awful but it takes a total of minutes and is now easier to me than doing 5 sit-ups. I've now been doing it once daily, about 5-7 days per week for the past 3 years and I'm almost totally functional now (and I was up and around after the first month). Plus, all my other treatments are now even MORE effective (hormone replacement, B12 supplementation to increase my methylation cycle and reduce my serum ammonia levels, etc.).

    I purchased my unit from Canada in early 2013 for about $3,000. I'll use this same unit until I die. And I only have to refill my O2 canister a couple times per year for a total of $40. Plus, I still haven't run out of the catheters that came with my unit.

    Please look into this treatment. You'll be ecstatic that you did.

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