1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS....
Discuss the article on the Forums.

Jacob Tietelbaum

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by mstrlucky74, Jun 12, 2014.

  1. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

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    @ahmo. thanks. I can't see that far into the future yet but it's nice to have something to look forward to. I'm seeing a NP I love and have done more since I started to see her last October than I had in years. It's the first time I felt hopeful that I could feel better.
    merylg and sueami like this.
  2. ahmo

    ahmo Senior Member

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  3. soxfan

    soxfan Senior Member

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    As for seeing a CFS specialist... I did that and he was a very well known one in Boston. He did absolutely nothing to help me. He only did basic blood test which I have already had 100s of times. No other testing whatsoever. He also only offered me Nexavir injections which where very painful.

    My homeopathic doctor has helped me waaaay more than the famous one in Boston.
    jimells, merylg and minkeygirl like this.
  4. lnester7

    lnester7 Seven

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    I am talking about getting Citokine profile, lymphocite subsets, NK cell test Activity number, Tcells, B cells..... All immunologic profile and known viral/ bacterial activations in CFS. Tilt table test for Dysautonomia, Sleep study.....

    I hear a lot of people that went to a "CFS Dr" and didn't even geta NK cell test!!!!

    So I do understand the furstrstion, you have to do homework and the kind of tests/treatment that doctor offers.
    merylg likes this.
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    OMG u packed alot in 2 sentences there lol. testing looks interesting, make sure u post results from these?:thumbsup:
    merylg and lnester7 like this.
  6. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

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    It's easy for some people to say, Oh just get all these labs done. What they forget is many of us, myself included live at or below the poverty level.

    So if our doc's won't order labs (my PCP will not run any tests I need because she can't use them to treat me since she's clueless about ME/CFS) So what don't I do to pay for the labs? Eat, pay my utilities?

    I'm changing PCP's and hope his ego isn't as big as hers. But who knows?
    merylg likes this.
  7. TigerLilea

    TigerLilea Senior Member

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    I don't think a doctor here in BC would do that kind of testing for CFS.
    merylg and minkeygirl like this.
  8. ahmo

    ahmo Senior Member

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    FWIW, After I'd seen the first few clueless MDs I gave up on testing. Even cortiosol tests never registered the upside-down nature of my cycles and my distress. John Lowe cut me loose from paying any attention to thyroid tests.

    I did test for toxic metals and prior to starting on some Yasko formulas, opted for a test which wasn't what had been suggested, but showed me I had SIBO. Even those, in retrospect, were unnecessary: we pretty much all have those issues, and benefit by acting accordingly.

    And I tested my genes, which gave me me a roadmap for moving forward. Yet, in retrospect, the biggest gain I got from my 23andme test was a graphic representation of everything that had been wrong w/ my life. Ultimately even this test was less important than treating myself by the symptoms that arose as I progressed.

    When I took the pyroluria questionnaire, I found another snapshot of life-long ailments, and began supplementing appropriately. Once I started tracking my symptoms, I uncovered the histamine and sulfur intolerances, and could rectify/manage them. And following symptoms has been critical in managing B12/folate. Self-testing has been my guide for supps and dosages. This is how I've inched forward over the past 2.5 years, not from any test ordered by an MD.:balanced:

    OK, a more prudent addition. Testing for viruses is probably a good thing to do. Testing for Lyme, which is now appearing in epidemic numbers, is very tricky to get reliable results, and treating AS IF you have Lyme is in line w/ intelligent detoxification. Basic thyroid tests, including reverse T3 is probably a good idea, but you generally won't get that unless there's some previous thyroid issue. I'm sure there are some others. But all that I've been tested for was useless.
    Last edited: Jun 13, 2014
    shah78, merylg and maryb like this.
  9. Gingergrrl

    Gingergrrl Senior Member

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    That is the most ridiculous statement that I've ever heard! I had lifelong insomnia (when I was *completely* healthy before I ever had CFS) and at present with CFS, I take two sleep meds (one prescription and one supplement) and actually sleep pretty well. But sleep has nothing to do with the physical fatigue, PEM, pots-type symptoms, tachycardia, etc.) Wow is all I can say!
  10. soxfan

    soxfan Senior Member

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    I went to a top well known CFS doctor and he didn't do an NK test on me. All he did was CBC...Metabolic..EBV and HHV6 titers and a Lyme test. Nothing else! Those are the same tests I have had dozens of times over the past ten years....he was a total waste of time and money.
  11. jimells

    jimells Senior Member

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    5. They are near impossible to deal with
    6. And after all that, you'll probably still be sick!
  12. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

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    @jimells I was never looking to be cured, just to be "less sick". Baby steps to that end.

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