Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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Need help with Treatment

Discussion in 'General Treatment' started by nryanh94, Feb 4, 2018.

  1. nryanh94

    nryanh94

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    So I’ve had some standard tests done.

    As of now what I know is that I have the following:

    Candida overgrowth
    EBV
    HHV-6
    C pneumoniae

    As well as low levels of testosterone and elevated levels of cortisol.

    Even with all of that my CFS is still pretty moderate which makes me scared of attempting any type of anti viral like Valcyte.

    I’m having difficulty finding a Dr in the DC area but was wondering 3 things.

    1. What type of Dr should I be searching for, any recommendations on websites to use to search?
    2. What other tests should I have done?
    3. What would be a suggested approach for these that could potentially help?

    I’ve already started to treat poor sleep, I know infections and hormones are 2 other big factors. Any help would be greatly appreciated
     
    andyguitar likes this.
  2. scienceshea

    scienceshea

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    I would suggest looking for a doctor who specializes in integrative or functional medicine. Hopefully someone can help you that is more familiar with local docs.
     
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  3. Learner1

    Learner1 Professional Patient

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    Pacific Northwest
    After seeing several types of doctors that were unable to help, I've been getting excellent care from a naturopathic doctor who practices functional medicine, who works with me on hormones, nutrients/metabolomics, gut health, and mast cell activation, and reviews all my meds.

    I also see a top specialist, who has been quite valuable in doing the lab tests to drill down and figure out what's the matter, to get me treatment, and push my insurance company to get it. I would not be getting the results I'm seeing with just one or the other.

    It depends on your health history, but if I were starting over, I'd have these done, as I ended up doing them all anyway, which delayed diagnosis and effective treatment. And, once they're done, getting them interpreted correctly. I had multiple doctors blow off results that were quite significant in getting effective treatment.
    • Genova Diagnostics NutrEval to catch nutrient deficiencies/imbalances/metabolomics issues
    • Iron panel
    • A stool test - uBiome, Genova, or Diagnostechs
    • An ACTH stim test or 24 hour saliva cortisol test
    • Pregnenolone, DHEA, maybe a DUTCH test
    • Immunoglobulins, with subclasses
    • T and B cell panels, with NK cells
    • Atypical pneumonias - chlamydia, mycoplasma
    • Any other infections common to where you live or have traveled - Lyme + coinfections
    • Antibody tests
    • Coagulation factors
    • A tilt table test
    • Doctors Data Provoked Urine Heavy Metals Test
    See the attached diagram. I don't know this doctor, but found it well into my treatment and it helped me understand what my doctors were testing and treating and how it fit into the whole picture. I have problems in every box in the diagram...

    My function when I started was 40-50% of normal, depending on the day. I'm now up to 65-80%, depending on the day.

    You're asking good questions. Taking this seriously and getting good diagnosis and help early increases your chances of recovery.

    Taking Valcyte was a key piece for me, nothing less worked, and I've bern on it for 8 months and am doing fine, with my liver supported with nutrients.

    Best wishes...:hug:
     

    Attached Files:

    pattismith likes this.
  4. pattismith

    pattismith Senior Member

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    cortisol interacts with thyroid hormons levels, did you learn something interesting from your Thyroid panel?

    Your blood potassium level is also an important factor to follow, together with magnesium and calcium, and vitamin D
     

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