Valtrex docs... alternatives to Dr Lerner??

Discussion in 'Fibromyalgia Main Forum' started by Atlanta8, Sep 26, 2008.

  1. Atlanta8

    Atlanta8 New Member

    I just phoned them to find out treatment protocols and prices and it looks like there's no way I'll be able to get treated with him. He expects to see you every 6 weeks, even if you're an international patient!! Plus, we don't have insurance so it would cost a hell of a lot.

    They said if I could find someone in the UK who was willing to work with me and monitor me then it might be possible to work it that way, but I imagine it will still be very expensive, plus Valtrex isn't used for this purpose here so many docs would probably stay away from it.

    I'm just wondering if there's anyone else who is highly regarded in this field (in the US) but has a slightly more relaxed protocol, but still a very effective one?

    Holtorf and Co are the ones that immediately spring to mind, but are there any others?

    [This Message was Edited on 09/26/2008]
  2. ladybugmandy

    ladybugmandy Member

    my advice...don't waste a lot of time and a lot of money on other clinics. go to dr. lerner, get him to write out a protocol for you to follow, and find a local doctor who will follow it. you will have to go to michigan only twice if you plan your heart testing ahead of time. (three times at the most).

    dr. lerner has done this for someone else on this board.

    the only thing i would be worried about is how to obtain valcyte if you need it. it is almost $40 a pill. don't worry too much about late 2009 there will be cheaper generic versions available (of course, if you have insurance for medication, you're home free)

    best of luck
    [This Message was Edited on 09/26/2008]
  3. Atlanta8

    Atlanta8 New Member

    That's extremely helpful - thank you!!

    I guess the tough bit will be finding a doc willing to support me. I'm not sure how the private system works over here, and whether they're happy to go along with such protocols. Luckily I'm going to see Dr Gordon Skinner soon, who is a thyroid specialist, but has also spent many years studying viruses and developed a herpes vaccine! So I think he's the man to ask about it - perhaps he'll offer to support me, or can recommend someone.

    Before I enter into antiviral treatment, I want to get my thyroid sorted (hence Dr Skinner), and checked for candida (I read this can flare up on antivirals? So want that sorted beforehand, too). Therefore I won't see Dr Lerner until around summer of next year which will fit in well with new drug versions!

    Annoyingly we don't have any type of medical insurance so we'll be self funding. Again, I'll try and ask Dr Skinner about the process of obtaining the meds I need. I'm hoping I'll just have EBV (had mono last year), but who knows!

    Thanks again for your help, Sue.
  4. ladybugmandy

    ladybugmandy Member

    excellent. best of luck. if you have any more questions, please let me know:)

  5. Atlanta8

    Atlanta8 New Member

    Do you think it's better that I wait a few months longer for treatment to sort out my gut (if it needs it, of course), get myself as physically prepared as possible before starting treatment, or not worry too much and start it asap? (I had mono July 07, and earliest I could go to US would be jan - feb probably, otherwise I'd wait til around may)

    I just read the thing in your thread about the longer it being in your system, the harder it is to treat!

  6. ladybugmandy

    ladybugmandy Member

    well....the thing is.....i am not sure if dr. lerner treats gut issues and he does not seem to treat yeast. he does do a test for some pathogens in fecal matter but that's about it.

    some people do have gut dysbiosis, yeast, and other issues...but i would say you are pretty safe because you had mono pretty recently. its a pretty safe bet that the epstein barr is your main problem, in which case dr. lerner is the best bet.

    once you treat the main infection, a minor co-infection will usually take care of itself.

    since you are going to be treated so early in your illness, i wouldn't think it would be a big deal to wait a few months to see. dr. lerner, but i think ASAP would be ideal.

    your prognosis is excellent!

  7. Tussen

    Tussen New Member

    If you live in Europe, maybe Kenny De Meirleir in Belgium might be a good choice? Check out this thread:
  8. ladybugmandy

    ladybugmandy Member

    demeirleir might work since you havent been sick too long. for long term sufferers i would still recommend lerner - although i am not altogether updated on demeirleir current treatment protocols.
  9. Tussen

    Tussen New Member

    Ladybugmandy (or anyone):
    I have seen this mentioned earlier; that De Meirleir is best on short time sufferers… But I have never seen anyone mention why.

    I would be thankful if anyone could please explain why his work is not suited for long time sufferers?
  10. Atlanta8

    Atlanta8 New Member

    I think it's because Dr Lerner takes the most aggressive approach, which is what is needed if you have had the virus in your system for a long time. If you have only had it a year or so you don't need quite so aggressive an approach and therefore there is more choice of docs available to you.

    That's how I understand it anyway - could be wrong
  11. Tussen

    Tussen New Member

    Thank you, Atlanta8. That makes sense :)
  12. ladybugmandy

    ladybugmandy Member

    yes...from what i hear, demeirleir doesn't use the hard core drugs for very long. he goes with nexavir and milder antivirals.

    he is also into antibiotics i think, for various reasons.
  13. Tussen

    Tussen New Member

    Ok, I understand.

    I would guess that it might have to do with a cost issue for the patients? De Meirleir is at a private clinic, and in Europe, it is (unfortunately) not so common to have health insurances covering this kind of treatments. Nexavir is expensive, but quite a bit cheaper than the heavier alternatives, is it not? And antibiotics are close to free compared to anti-virals.

    But still… If it’s not working, it is quite an expensive alternative anyway…

    I am a bit curious about heavy medications on long time patients since ME-patients in general tend to be quite sensitive to medications. Are there any stories about how the patients tolerate the aggressive approach?
  14. ladybugmandy

    ladybugmandy Member

    seeing demeirleir is not expensive but the tests he does are probably costly, along with travel and lodging.

    in terms of how CFS people do with aggressive antiviral therapy, all we have are anecdotal reports of some benefiting. i haven't heard of too many reports of permanent adverse side effects from drug toxicity since liver functions are monitored.

    dr. lerner says most of his patients improve on antivirals and dr. montoya had some of his patients recover on valcyte. some other doctors claim some success too, such as teitelbam and maybe enlander.

    so that's about it....

  15. Tussen

    Tussen New Member

    Thank you, this is really helpful :)
  16. ladybugmandy

    ladybugmandy Member

    no problem!

    just google "CFS antivirals" and you will have more than you care to read lol