Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Struggling to make sense of it all

Discussion in 'General ME/CFS Discussion' started by littlebird6180, Sep 16, 2015.

  1. littlebird6180

    littlebird6180 Senior Member

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    I've started at NOVA neuro immune institute a couple of months ago. For as far back as I can remember, I've struggled with my health. I've been diagnosed with POTS, I had chronic lyme that I recovered from after 16 months of bicillin injections. I had mono twice, once at 16 and again at age 20. I'm also homozygous for MTHFR mutation. Anyway, I struggle with memory loss, brain fog, low stamina, feeling generally unwell all the time, chronic migraines and fatigue.

    First, I want to say that I love the doctor I'm seeing at NOVA. I've never felt like I'm in such good hands. My doctor for lyme saved my life back then but was always upselling his line of supplements, didn't take insurance and practically bankrupt me and it really gave me a bad feeling that he'd do that to his patients. This doctor takes insurance, listens thoroughly, backs up all her protocols with extensive research and makes me confident that I can get my life back.

    Anyway, these are the results of my blood work:
    Parvovirus antibody result was 3.7 which shows previous exposure to the virus.
    Human Herpes Virus 6 (roseola) was positive at 2.671 showing past exposure.

    CXP Panel Report:
    Total CD3+ 83.151% HIGH (normal range is 66-80%) HEM 1356 (normal range 989-1899)

    CD3+CD4+T-Helper/Inducer 56.6668% HIGH (normal range 38-53) HEM 924 (normal range 595-1199)

    CD3-CD56+NK Cells 3.739% LOW (normal range 5-6) HEM 61 (normal range 98-294)

    Epstein Barr Virus Serology Panel:

    EBV Nuclear Antigen IgG >>600 (Above LoM) Positive interpretation (above 75%). I'm greater than the 90th %ile for positive serology with 600 being the 90th.

    EBV Viral Capsid Antigen 368 Positive interpretation (186-517)

    EBV Viral Capsid Antigen IgM <<10 Negative interpretation (below 10%)

    EBV Early Antigen IgG <<5 Negative interpretation (10-25%)

    conclusion: I had a past infection but it is not reactivated.

    NK Cell Function:

    NK cell enumeration: 3.74% LOW (normal mean 8%) 61/cumm (normal mean 177/cumm). This means I don't have many natural killer cells.

    NK cell activity: 4.82% LOW (normal mean 28.1%) And this means that those NK cells that I do have have very poor functionality. I fall in the less than 10th percentile with 12/74% being the 10th percentile.

    Cytokine Multiplex-18 report:

    Proinflammatory

    LTa (TNFB) 4.423 HIGH (greater than 75th percentile)

    IL6 0.000 LOW below 10%

    TH1/IL-8:
    IL12 4.352 LOW (below 10%)
    IL2 4.972 HIGH (75-90%)
    IL15 9.771 HIGH (above 90%)
    IL8 0.000 LOW (10%)
    TNF RII 730.1 LOW (10-25%)

    Anti-Inflammatory:
    IL5 0.995 LOW (below 10%)
    IL17 5.455 HIGH (above 90%)
    IL13 2.19 LOW (10-25%)

    Here is my current protocol:
    Naltrexone (not working yet she said because of my poor immune function)
    CoQ10
    K-Pax Immune
    Fludrocortisone
    Salt tabs
    Vit D3
    Methyl B-12 and Methyl Folate

    So here are my questions I'm saving for my next doctor's visit but if anyone has any input in the meantime, I would be so grateful.
    1) how do I know this isn't cancer?
    2) will the K-PAX immune help? I read on this forum someone with equally low NK count that they had to go on AIDS meds, what are those?
    3) I don't know how to interpret the Cytokine Multiplex 18 report. I know doc walked me through it but i have zero functioning memory so don't blame me! ;)
    4) is there hope for a full recovery? a good quality of life (something I've never had)

    Thank you for taking the time to read this. I know it's a lot and really appreciate it.
     
    alkt likes this.
  2. minkeygirl

    minkeygirl But I Look So Good.

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    I know some people who do ok on k pax immune. Too espensive for many and some have issues with the Ritalin.

    AIDS meds are anti retro viral.

    I can't comment on anything else.
     
    alkt likes this.
  3. littlebird6180

    littlebird6180 Senior Member

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    thanks. Just to clarify, I'm not going on the K-PAX energy formula or ritalin. I have to get my heart rate and POTS stable first before i can do that. I'm also not really partial to the idea of ritalin because i don't do well with any stimulants and it's not actually fixing anything, just masking.
     
    alkt and Misfit Toy like this.
  4. Misfit Toy

    Misfit Toy Senior Member

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    @littlebird6180 -I'm sorry that I have no advice or wisdom here. I'm just sorry that that Lyme doc did that to you. These "specialists" are such a rip off. I have a doc that whenever I go to him he's trying to sell me on some new supplement and they are all expensive. It kills me because we are sick, desperate and low on funds and yet they'll do anything to make a buck. It's a business where the value of a human being gets lost.

    No Ritalin with POTS. No way. I refuse to take Ritalin for the same reason. It's a mask.
     
    alkt likes this.
  5. minkeygirl

    minkeygirl But I Look So Good.

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    I wa thinking of some protocol that uses kpax with Ritalin. Forget what it's called

    Kpax still very expensive.

    I don't use stimulants now but have. Sometimes you need something even if it is a mask.
     
  6. littlebird6180

    littlebird6180 Senior Member

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    Thanks @Misfit Toy I agree about the specialists. This doctor was had a fancy NYC office on fifth avenue and photos of his fancy vacations all over--meanwhile his patients are bankrupting themselves just to try and have a normal life. But regular doctors wouldn't help so he was profiting off of being one of the few who would.

    @minkeygirl yes K-Pax is so expensive. I haven't added up what my monthly supplements are yet because I don't want to face it but I'm sure it's several hundred :( The only stimulant I seem to be able to handle is rhodiola. It's not an actual stimulant like ritalin but it gives me really clean energy and I wouldn't be able to get through my days without it. The ubiquinol (coQ10) seems to help enhance the rhodiola and make it last longer too.

    I agree that sometimes you need something even if it's a mask but for me, I'm so sensitive to side effects and many stimulants make me feel so awful and aren't worth it for me. But if they work for you, that's great!
     
  7. minkeygirl

    minkeygirl But I Look So Good.

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    @littlebird6180 We all do what we can do. There is no one size fits all.
     
  8. littlebird6180

    littlebird6180 Senior Member

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    @minkeygirl of course! sorry if you thought I implied otherwise because I certainly know and believe to my core that treatment has to be tailored to the individual. If only there were a one size fits all solution!
     
    minkeygirl likes this.
  9. minkeygirl

    minkeygirl But I Look So Good.

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    You said it!
     

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