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What does general treatment for CSF consists of?

Discussion in 'General Treatment' started by UWFgirl, Feb 7, 2013.

  1. UWFgirl


    I was wondering what most people are told to do being treated for CSF? I called Dr. Klimas office the other day for an appt., and found out she doesn't accept insurance. That the first bill would be around 3-4k. I called Dr. Lapp office and found that he doesn't accept insurance either. This is some bull. I have a high deductible so it would be like paying for these appt.s out of pocket. In the meantime, I think I'm in the middle of a relapse possibly on the road to recovery, and was wondering what do the CFS specialist have patients doing/trying to get better? Any other Dr.'s in the U.S that are supposed to be really good at treating this disease? Any help is greatly appreciated...
    MishMash likes this.
  2. Sparrow

    Sparrow Senior Member

    To my knowledge, the "mainstream" doctors are advising a number of things, including:
    -pacing, and avoidance of things that make symptoms worse or cause crashes
    -limiting physical activity to stuff that does not trigger symptoms and does not cause your heart rate to rise too much (i.e. does not take you over your anaerobic threshold)
    -avoidance of stress where possible
    -B12 injections
    -Florinef, increased water/electrolyte beverages, increased salt, compression stockings (if orthostatic intolerance is an issue)
    -in more experimental treatments, some doctors are investigating Valcyte, Rituximab, etc.

    I know there are many more medications on the list that I'm not thinking of at the moment, for various symptoms (I have tended to pay the most attention to ones that were most relevant to me, for obvious reasons).

    The naturopath types have a pile more suggestions as well. Though unfortunately there isn't a whole lot out there with consistent very good results overall. ...Except more resting. That seems to do good things for pretty much all of us. Each doctor seems to have their own little group of things they are partial to using, and they don't all overlap between different doctors. There isn't yet any solid consensus with a lot of it.
    SOC likes this.
  3. Sushi

    Sushi Moderation Resource Albuquerque

    Sparrow listed some of the treatments being offered but there are many other approaches too, and unfortunately for the patient trying to figure out what to do, there is no agreement among doctors--different doctors follow lines of treatment that they feel are most helpful and they vary a great deal in their opinions.

    Good testing helps to see where you, the individual patient, might fit in the treatment possibilities but this means choosing your doctor before you get the results. Maybe continue to read here and see what different doctors are doing and how that matches with what you have observed in yourself.

    Best wishes, this is not an easy choice and will usually require quite a lot of out of pocket expenditure as even doctors who take insurance themselves will need to prescribe tests (and treatments) that are not covered by insurance.

    heapsreal and SOC like this.
  4. MishMash


    If you shop around in your network, where they won't charge you thousands, they will give you all that stuff that Dr. Klimas will give you. Dr. Klimas does really excellent immunological testing; so you know exactly why you feel like s**t. It's not all in your head. Which is really helpful, especially when docs are telling you you are depressed. That was my only benefit from spending $$ at her office. So I wouldn't say it was all "bull". The diagnosis part was helpful; but the rest of it was unhelpful. I have heard bad things about Cheney, but you can get reviews from other folks.

    My current local internist (deductible $20) would order immunovir, ldn, equilibrant, florinef, etc, etc if I asked her. None of these have no signficant contraindications. If I wanted a sleep study, i'm sure she would order that. I even experimented around with thyroxine (didn't help). You should spend some time reading posts on the various CFS guru specialist docs, on websites like this one. See how much the various meds cost, and see what are the overall reflections of efficacy. You might want to lay out $20 grand for something unproven. Maybe not. But I would personally advise do reseach first, then just ask your ordinary internist if they will prescribe the same thing for you. Travelling to these expensive cash-only CFS docs is only going to lighten your wallet; not make you feel so much better.
  5. xchocoholic

    xchocoholic Senior Member

    I'd look at Dr. sarah myhill's info. Then Dr. Teri wahls. And if after following their free advice for a few months
    or if money isn't a problem, I'd make an appt with an integrative / functional doctor and have some tests run.
    This kind of doctor looks for root causes such as nutritional deficiencies, food intolerances, parasites, etc etc via
    traditional and holistic testing. Tc ... X
  6. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Southern USA
    Integrative MD's will be able to help with supplements for the immune system, mitochondria, etc.
    heapsreal likes this.
  7. Hip

    Hip Senior Member

    heapsreal likes this.
  8. drex13

    drex13 Senior Member

    Columbus, Ohio

    I find that odd. I got onto my insurance website and looked up Dr. Klimas and she is listed as a provider on my insurance. Also, Dr. Lerner is on my insurance plan too. I think Dr. Enlander might be too. I'll have to double check that. I have BCBS/Anthem health insurance.
  9. Creekee

    Creekee Senior Member

    Thanks much for the "Roadmap" link. Excellent document. I'm going to print it out and take it with me when I test drive a new doctor in a couple weeks (ever the optimist!).



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