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My cfs/me history

Discussion in 'General Treatment' started by sillysocks84, Oct 7, 2015.

  1. sillysocks84

    sillysocks84 Senior Member

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    So I just want to gather some general information from everyone, if you all are willing. Please answer these questions, for comparison purposes :

    1. What year did you get sick? Was it sudden or gradual?
    2. Trigger?
    3. Does yours go in remission and relapse? Or, does it gradually get worse or gradually better over time? Or just plain stable?
    4. Do you have pots or nmh with yours?
    5. Treatment that helped? Treatment that made you worse?
    6. Your doctor? Or are you self treating?

    I'll also post my answers below...
     
    alkt likes this.
  2. sillysocks84

    sillysocks84 Senior Member

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    1. September 2012, sudden

    2. DTAP vaccine

    3. Remission while pregnant. Relapsed in November 2014. Have gotten somewhat better but still cannot sustain activity or I crash. My POTS is constant. Now with food allergirs coming out for the last 2 months, worse around menstrual cycles.

    4. Definitely Pots, as stated

    5. Large doses of vitamin c and take 2 neuroprotek a day and it helps energy and less rashes. Malic acid seems to help my leg pain, but haven't taken it in a while. I need to again. All of this is not cheap!

    Dhea made me initially improved and then worse. Although I do want to try it again or a precursor. This time with an endocrinologist or cfs me expert if I can find one in the midwest.

    6. Obviously self treating.
     
  3. minkeygirl

    minkeygirl But I Look So Good.

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    Left Coast
    I think this has been done before, a few times. I can't remember who though.
     
  4. sillysocks84

    sillysocks84 Senior Member

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    I'm sure it has, I just couldn't find anything.
     
  5. minkeygirl

    minkeygirl But I Look So Good.

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    Left Coast
    Maybe a poll? JaimeS?
     
  6. whodathunkit

    whodathunkit Senior Member

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    @sillysocks84...Interesting. "Remission while pregnant". "Worse around menstrual cycle."

    Have you ever done a thorough hormone panel? Like 24-hour saliva, plus complete thyroid work-up, stuff like that?

    Do you have fibroids or endometriosis?
     
  7. sillysocks84

    sillysocks84 Senior Member

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    I haven't had a 24 hr saliva. I had a blood test where my gyno said thyroid was ruled out. I don't know if I needed anything extra. I do have preceding pcos caused by insulin resistance. My dhea levels are lower than normal. But my gyno said my hormones are in normal range except that one. So I'm not sure how to proceed even though I think mine is brought on by hormones and or insulin resistance. But my doctor said I don't have diabetes.
     
  8. ahmo

    ahmo Senior Member

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    Northcoast NSW, Australia
    1. What year did you get sick? Was it sudden or gradual?
    2003. Chronically fatigued since virus 4 years earlier; Collapsed in European heat wave, the beginning.
    2. Trigger?
    Inescapable heat + physical and emotional stress

    3. Does yours go in remission and relapse? Or, does it gradually get worse or gradually better over time? Or just plain stable?
    For the past 3.5 years I've been improving. I have now stabilized, with virtually no noxious symptoms, but very affected mental and physical energy.

    4. Do you have pots or nmh with yours?
    OI, maybe POTS, until I had enough B12

    5. Treatment that helped? Treatment that made you worse?
    Made worse by Teitelbaum's recommendations of things for energizing a fatigued system.
    Made better by correct vitamins, minerals, EFAs, diet, detox (elimination of metals, fungus, bacteria, parasites)

    6. Your doctor? Or are you self treating?
    Self-treating.
     

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