Julie Rehmeyer's 'Through the Shadowlands'
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PET Scan show hypoperfusion areas

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Frenchguy, Jan 6, 2018.

  1. Frenchguy

    Frenchguy

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    My CD3- CD16+ and/or CD56+ count was 29%, 663 (range 100/400).

    One year later, the new count is 128...
     
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  2. Frenchguy

    Frenchguy

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    I don't have viral symptoms (swollen lymph nodes, fever ...)
     
  3. pattismith

    pattismith Senior Member

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    I'm not sure if the absence of these symptoms really means that none is involved. Did you have serological blood work (IgG and IgM) for these virus and for toxo?

    Most of these virus can make NK cell rising during the initial stage as well ...
     
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  4. Frenchguy

    Frenchguy

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    Me too...

    Herpes 1
    Igg : >51
    Igm : negative

    Herpes 2
    Igg : negative
    Igm: negative

    Ebv
    Vca igg : >750
    Vca igm : negative
    Ebna : 420
    Mni test : negative

    Toxoplasmose : negative

    Hiv: negative

    Hepatitis A, B,C: negative

    I will be hospitalized next week because my symptoms deteriorate ... I have shortness of breath at rest and severe head pain with the fatigue.

    It's very difficult, for me, photopheresis can help with my atypical lymphocytosis and unknown trigger . The hospital supposed to reinfuse my blood have blocked my treatment because they wan't that my doctor show my case in staff meeting... super
     
    Last edited: Jan 14, 2018
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  5. pattismith

    pattismith Senior Member

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    i'm sorry to read you are geting worse, did you already start photopheresis David?

    I can see that you have IgG for EBV and HSV1, but has your serology been done when your disease started or a year later?

    How would you describe your head pain? Do you have tinnitus (acouphènes)?
     
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  6. Frenchguy

    Frenchguy

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    The serology have been done 9 months after onset.

    I have pain in front and upper parts of my head. I have severe tinnitus in right hear.

    I haven't started yet photopheresis because a doctor in the hospital who will reinfuse my blood block the procedure... he wan't a presentation before starting...
     
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  7. pattismith

    pattismith Senior Member

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    Your EBV serology indicates past infection, but you don't know when and these results can't show it
    It can be 9 months before as well...

    I read in an article that "Several pathologies can cause both symptomatic headache and tinnitus, such as carotid artery dissections, arteriovenous malformations, traumatic brain injury, space occupying intracranial lesions, and intracranial hypo- or hypertension "

    https://www.hindawi.com/journals/bmri/2015/797416/

    EBV and Lyme can produce post infection intracranial hypertension, so maybe something to investigate?

    I wish they will find what you are suffering from, maybe next week!
     
  8. Learner1

    Learner1 Professional Patient

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    Have you had a PCR test for EBV? Those titers can also indicate a chronic infection, for which an antiviral drug may help greatly. EBV can cause autoimmune antibodies and a number of other problems.
     
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  9. Frenchguy

    Frenchguy

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    Hi @pattismith,
    I think chronic EBV induce swollen lymph nodes and fever in the majority of cases but I'm not sure.
    For Lyme, i have been extensively tested with laboratory Barla tests (western blot and immunoblot). The results was negative.
    I have been on ceftriaxone and many others antibiotics during 6 months because this Lyme doc said that I can have Lyme without positive results.
    Unfortunately, no improvements...
     
  10. Frenchguy

    Frenchguy

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    Hi @Learner1, I don't have had PCR but I will ask to my doc when I will hospitalized.
    I currently take valacyclovir 2g/day but no improvements...
    I have "flares" every 2 or 3 weeks with a sore throats and when this begin, my condition deteriorate...

    I think I have ME, but I don't know the root cause...
     
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  11. pattismith

    pattismith Senior Member

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    David, you are already on valacyclovir, so your doc is doing his best.

    Valacyclovir and Valganciclovir have shown to be useful for subsets of CFS patients by Dr Lerner and Dr Montoya,
    after long courses.

    Would you say if some of your antibiotic trials have worsen your headache?

    What kind of tinnitus did you experiment?
     
  12. Frenchguy

    Frenchguy

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    @pattismith

    j'ai un sifflement constant dans l'oreille droite

    Desolé pour l'anglais lol
     
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  13. Learner1

    Learner1 Professional Patient

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    Maybe its not the right drug. My doctors started me on valacyclovir and switched me to valganciclovir.

    And may be you have some other infection, too, with the flares?

    Glad they're going to help you more...

    Best wishes...:hug:
     
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  14. Frenchguy

    Frenchguy

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    Maybe, but it's my Lyme doctor who prescribed me valacyclovir and apparently valganciclovir isn't available in local pharmacy, just in hospital pharmacy. I already know that my internist doctor would not prescribe that...

    Thanks Learner
     
  15. Learner1

    Learner1 Professional Patient

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    I've been on it 7 months at 1.8g a day and its helped a lot. Here's a paper on it in case its applicable to your situation.
     

    Attached Files:

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  16. pattismith

    pattismith Senior Member

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    by the way, not sure if a blood PCR done after a course of Valacyclovir will show any EBV....

    David, let's hope the doc will agree with a photopheresis treatment, it looks promising!
     
  17. Frenchguy

    Frenchguy

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    @pattismith, I don't know if a course of antiviral can make ebv PCR negative...

    Yes, my hope is that the doctor who actually don't want to give ECP change ...
    As you know, it's difficult in France to have treatment for this disease...

    I think photopheresis can help in my case given my high CD8 count and the finding of mark Davis on CD8 T cell expansion. I can't measure if i really have this clonal expansion in my blood, but given my symptoms and the atypical rise of this T cell subset, this area seem a good candidate.

    For those who think Photopheresis can help, I want to clarify an important point, photopheresis can only work when there is pathological clone in yours T cell subset. The pathological clone, after irradiation with UV light is modified and when he is reintroduced in blood circulation, the immune system react and kill others identical clones,

    David
     
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  18. pattismith

    pattismith Senior Member

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    David, I think @Gingergrrl was PCR positive for EBV after her ritux treatment, and she had a course of antiviral until her PCR was negative (I can't remember which one nor how long, sorry). I'm sure she would read and answer to this post, but currently she is fighting for her mum's life, who is in a very bad situation in hospital, so she probably won't for now.

    @Jesse2233 did well under photopheresis too although I am not sure if he had any abnormality in his CD8 prior to the treatment. His immune specialist doc seems interested to experiment this treatment on other ME patients, although jesse didn't mentioned which fullfilled conditions would be required.

    By the way I guess in France, photopheresis will be prescribed only in the few indications you described, so let's hope you will be entitled to it, crossed fingers
     
  19. Gingergrrl

    Gingergrrl Senior Member

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    Patti, I wrote a detailed update in my Rituximab thread a while ago (sorry can't link to it now) but when we re-tested the EBV PCR, it was negative so my doctor said I did not need an anti-viral.

    The first PCR was so barely slightly positive that my doc feels it was either false positive or due to contamination. We will retest with next set of blood work but most likely will remain negative. Hope this helps.
     
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  20. pattismith

    pattismith Senior Member

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    thank you ginger, I read your ritux thread, but it looks like my memory is not great, thank you for correcting me, especially as I know you are fighting so hard now for your mom.
     
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