The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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PET Scan show hypoperfusion areas

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

  1. pattismith

    pattismith Senior Member

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    Hello @Frenchguy ,

    I was thinking of you, did you benefit from your week in hospital?

    i hope your doctors find a cause to your problems and a way to solve it.

    If not , I would suggest you to give me your extra CD8 (I'm too low!):)
     
  2. Learner1

    Learner1 Forum Support Assistant

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    Just saw my doctor yesterday. He says even though my PCR is now negative after antiviral treatment, he wants to test it again a few times over the next few months to be sure it stays negative.
     
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  3. pattismith

    pattismith Senior Member

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    I found this study, and was wondering if it could be relevant to fight your lymphocytes activation:

    Differential Inhibition of T Lymphocyte Proliferation and Cytokine Synthesis by [6]-Gingerol, [8]-Gingerol, and [10]-Gingerol
    Authors
    July 2015
    • Abstract
      [6]-Gingerol, [8]-gingerol, and [10]-gingerol are pungent components of fresh ginger, extracts of which inhibit various components of the inflammatory response. Because little is known regarding the effect of gingerols with different unbranched alkyl side chain lengths on the activation and effector function of T lymphocytes, we compared the effects of [6]-gingerol, [8]-gingerol, and [10]-gingerol on murine T lymphocyte proliferation, expression of CD25 and CD69 activation markers, cytokine synthesis, and interleukin (IL)-2 receptor signaling. All three gingerols inhibited DNA synthesis by T lymphocytes, as well as interferon-γ synthesis. In contrast, only [8]-gingerol and [10]-gingerol inhibited CD25 and CD69 expression, and IL-2 synthesis. None of the gingerols affected IL-4 synthesis. Exogenous IL-2 enhanced T lymphocyte proliferation in the presence of [6]-gingerol but did not significantly increase T lymphocyte proliferation in the presence of [8]-gingerol or [10]-gingerol. In line with this finding, [8]-gingerol and [10]-gingerol impaired IL-2-induced proliferation of CTLL-2 cells, but constitutive CD25 expression was unaffected, indicating inhibition of IL-2 receptor signaling. In general, [10]-gingerol and [8]-gingerol were more potent inhibitors of T lymphocytes than [6]-gingerol. Suppression of T lymphocyte responses by gingerols suggests that these phytochemicals may be beneficial in chronic inflammatory conditions associated with excessive or inappropriate T lymphocyte activation. Copyright © 2015 John Wiley & Sons, Ltd.
     
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  4. Gingergrrl

    Gingergrrl Senior Member

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    I know nothing about this except that "ginger" is very therapeutic :dog: ;)
     
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  5. pattismith

    pattismith Senior Member

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    yes Ginger it has anti-viral, anti-bacterial properties, immunomodulator and more!

    I wonder if ME/CFS patients have done extensive trials with it? Did you do?
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    I have not done any trials with ginger and was being silly b/c it is my dog's name and she is therapeutic. But (anecdotally) ginger has helped me with everything from nausea to headaches and I have ginger tea, ginger ale, ginger candies, ginger gum, and all forms of ginger at home at all times.
     
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  7. Frenchguy

    Frenchguy

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    Hi everyone,

    Sorry for my late response. I was hospitalized a month ago during 4 days.

    The hospitalization was a nightmare. I saw two psychiatrist and two psychologists...

    A neuro told me I have a functional disorder and If i want immune modulating treatment, I have to go abroad.
    My internist doctor who is convinced I have ME is blocked. He prescribed photopheresis treatment and contacted two centers to perform the procedure. The first center who use a dissociated system was okay, but the hospital refused (because the cost of the procedure is charged to the hospital).
    He contacted an other center who perform the procedure with à therakos system and they refused because it costly and off label.

    My family proposed to pay the treatment but it's refused.
    My doc put me on azathioprine 150 mg/day and propanol for POTS the time we find an other solution... We contacted the president of the French Scientific comitee of CFS, I say I have no proof this treatment will work and it's costly..

    My condition deteriore to the point I am bedridden most of the time.

    Sad France
     
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  8. pattismith

    pattismith Senior Member

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    David, I'm sorry you have to deal with all these difficulties, if you wish to try photopheresis, maybe you will have more chance in Switzerland?

    https://www.hug-ge.ch/dermatologie-venereologie/photopherese


    ;;;;;;
     
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  9. Frenchguy

    Frenchguy

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    Thanks for the link @pattismith

    I looked studies about photopheresis cost and it's HIGH (4000 francs suisses / traitement LOL).

    I will have the response soon to a Moroccan private clinic who perform this treatment.
    If it is ok, I will fly to Morroco ...

    We have the same equipment at 50 kilometers of my home, but no.
    Did you know Jean Dominique de Korwin Patti ?
     
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  10. pattismith

    pattismith Senior Member

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    No I don't know him, he is a CFS specialist?
     
  11. Frenchguy

    Frenchguy

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    It is the French president of the French SFC scientific comitee
     
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  12. pattismith

    pattismith Senior Member

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    What do you think of him? It seems he couldn't help you...Did he propose something?
     
  13. Frenchguy

    Frenchguy

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    This man représente the main problem of ME recognition in France.
    They don't take the disease seriously and recommend to physician to don't do extensive tests for people because it is costly.

    When I see the complexity of our disease and the number of differential diagnosis, I think ils se foutent de notre gueule
     
    pattismith likes this.
  14. pattismith

    pattismith Senior Member

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    unfortunately it's the same in most countries, and only a few serious CFS/ME specialists are doing a great job worldwide.
    I was not expecting France to be at the top in this field, so I'm not surprised by your experience, it is very sad.

    Hopefully your doc trusts you and is willing to help, it means you have been a good advocate for your case,
    your efforts will pay, I'm sure
     

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