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AVIVA Semi-Finals: National ME/FM Action Network is competing for $100,000
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Seeking Help Making a HealthCare Plan

Discussion in 'General Treatment' started by sparklehoof, Apr 2, 2014.

  1. Hi,

    I hope that you're feeling well as can be.

    I have been sick for 15yrs and have been feeling worse in the past 19 months.
    I'm able to leave the house once or twice/week to run to the Rx, a doctor's appt. or another short activity.
    I'm concerned that I'm getting worse and don't have a doctor who is very knowledgeable about ME, though I'm fortunate that she has been willing to work with me.

    I'm hoping to get in to see a specialist but since wait lists can take several years, I'd like to meet with my dr and
    bring her credible/reliable info. regarding testing or treatments that could be of benefit in the meantime.

    1.Does anyone have a list of the labs that are universally recommended or if that doesn't exist is there a consensus between some specialists? Perhaps things like Comprehensive Lymphocyte Activations/Differential and Natural Killer Cell Cytotoxicity, Comprehensive Natural Killer Cell Cytotoxicity, EBNA IgG, EB-EA IgG, VCA IgG, VCA IgM, HHV6 IgG, C-Reactive Protein, Multiplex 18 Cytokins etc and links to any supporting research that shows these labs to be necessary?

    2.Does anyone know if anti-virals are used to treat patients who have normal IgM levels, but high IgG levels?

    3. Is there a preferred medication for sleep? I have tried Ambien, but even on a very low dose feel groggy the next day.

    4. I've been doing a little reading on the NCF about:
    PIV-5: Has anyone had experience with this?
    Vfend (Voriconazole): Has anyone taken this?
    NCF recommended blood tests:
    CD3-Total Lymphocytes
    CD4-Helper T-Cells
    CD8- Cytotoxic/Suppressor T cells
    CD19-Mature B-cells
    Kappa/Lambda Light Chains
    Soluble IL-2R
    Ciguatera Epitope

    If anyone has any other suggestions as for resources for physicians that would be amazing.

    Thank you
     
  2. Valentijn

    Valentijn Activity Level: 3

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    Amersfoort, Netherlands
    @sparklehoof - I'd focus more on testing for infections (bacteria and viruses) versus markers of infection and inflammation. The problem with the markers is that they usually aren't very specific in indicating what is wrong. Whereas when a bacterial or viral infection turns up, you know what needs to be treated and how to treat it.

    Regarding sleep, it probably depends on what's causing the problems. Do you have trouble falling asleep, or not sleeping long enough, or waking up too often? Does pain seem to keep you awake, or is your mind running too fast to let you sleep when you're exhausted? Mine was the "wired but tired" with trouble falling asleep and then being too wired to get back to sleep if I woke up during the night. N-acetylcysteine works for me, probably by reducing glutamate levels, as glutamate is rather excitatory.
     
    maryb likes this.
  3. Thanks Valentijn,
    I'll look into the L-acetylcysteine.
    I don't have any active viruses or infections-high IgG levels but nothing acute.
    Thanks again
     

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