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First Direct Evidence of Neuroinflammation - 'Encephalitis' - in ME/CFS

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Apr 28, 2014.

  1. HowToEscape?

    HowToEscape? Senior Member

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    I hope no one here is relying on drugs.com for more than incidental information.

    Ketamine is not in the same class as aspirin. It's safe in the same way that shoulder-fired missiles are safe: some conditions apply ;-)
    vli likes this.
  2. vli

    vli

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    I was just going to post about this! Thanks, Nielk.
    Nielk likes this.
  3. vli

    vli

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    Did you mean the side effects on kidneys? If so, did you mean methoxetamine (mxe)?
  4. soofke

    soofke

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    Dutchy
  5. Marco

    Marco Old blackguard

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    I'm pretty sure that this is a more than plausible scenario and could also explain the mixed results/failure to date to identify a biomarker.

    We have a syndrome defined solely on the basis of a collection of non-specific symptoms and now what appears to be evidence of neuroinflammation of a type seen in a wide range of other conditions (with presumably a variety of etiologies - autoimmune, trauma, metabolic, stress, pathogen related, and even aging).

    Its not too unlikely that with a slightly different mix of symptoms or demographic (e.g. an older age group) that each of us could have received a different diagnosis.
    MeSci likes this.
  6. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Not sure why you mention aspirin. You were talking about ketamine, and I thought it fair to post some info on it so that people can make informed decisions.
  7. Marco

    Marco Old blackguard

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    Given the high cost of these PET scans and possible associated methodological issues that might result in progress in replicating and expanding these findings being slower than we would like, I've been interested in finding other 'markers' of neuroinflammation that may provide less direct but converging evidence.

    I've found a few but am grateful for being alerted to another potential marker in peripheral blood (PBMC's).

    Microglial activation is now widely believed to underpin neuropathic pain syndromes (often widespread 'central' pain sensitisation which is unrelated or out of proportion to an initial peripheral injury). Various peripheral messengers (associated with damage, pathogens or cellular/metabolic stress) activate CNS microglia via toll like receptors (TLR's) resulting in the release of pro-inflammatory cytokines such as IL1-b. It appears that peripheral TLRs act similarly to those in the brain with the potential that activated brain TLR's may be reflected by activated TLR's in the periphery.

    This paper seems to confirm this with peripheral IL1-b levels elevated in chronic pain patients in response to TLR agonists compared to pain free controls suggesting that the TLR/glial pathway in chronic pain patients is 'primed'. Note 'unstimulated' PBMC IL1-b levels didn't differ between patients and controls.

    Increased Responsiveness of Peripheral Blood Mononuclear Cells to In Vitro TLR 2, 4 and 7 Ligand Stimulation in Chronic Pain Patients

    http://www.plosone.org/article/info:doi/10.1371/journal.pone.0044232

    Wouldn't it be nice if similar 'biomarkers' of microglial activation/neuroinflammation could be identified in' readily accessible peripheral blood samples' in ME/CFS patients? Its not as if we're now short of biobanks.
    NK17 likes this.
  8. beaverfury

    beaverfury beaverfury

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    I'm doing great on minocycline. Don't want to jinx it, but i've had a significant increase in activity, no PEM (so far), clearer head, no pain, no POTs-like symptoms.
    Some of the improvement maybe could be attributed to buhner herbs i am also taking, but i noticed the shift to lack of PEM and lack of POTs-like symptoms particularly after taking minocycline.
    I have been on other lyme Abx for a year, and am now into my third week on mino.

    It stuffs up sleep, but i'm managing that with some add-ons.

    Fingers crossed this bout of better health continues. One often looks like a dickhead when touting a cure after a couple of weeks of remission, but it's clear i have improved since minocycline.
    NK17, searcher and Marco like this.
  9. CallieAndToby

    CallieAndToby Senior Member

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    Yea it sounds like we are the same age and have the same things going on and the same stories. I was diagnosed with a sub-acute variation of autoimmune encephalitis, then dropped by my doctors at NYU. With that diagnosis insurance still won't approve treatment. So I'm left with nothing and no-where to turn. I am so very sorry, all I can say is I understand. I have horrific fatigue and PEM as well. I saw two top CFS specialists but they couldn't help and I had violent reactions to everything they tried, I also have extreme sensitivity to all medication and supplements.
    vli likes this.
  10. Aerose91

    Aerose91 Senior Member

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    I have all exactly the same. I even went down to the John Hopkins ER because they are supposed to have an encephalitis specialty inside of their neurology dept but they turned me away.
    Sounds like we have a chronic encephalitis on top of ME
    Last edited: May 1, 2014
    vli likes this.
  11. soofke

    soofke

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    thatwouldbechronicencephalitisontopofchronicencephalitisthen
  12. CallieAndToby

    CallieAndToby Senior Member

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    Well so far we've figured out you can't go to the following for help with encephalitis: Mayo, Yale, Shands, NYU, and John Hopkins............ Nobody locally has any clue what to do. Also, do you think the inflammation and / or autoimmunity to the brain is causing the neuro-psychiatric symptoms? I've tried psych. meds for 10 years and not a single one has helped. The NYU doctors said if you have inflammation and in my case they called it "severe and extensive", psych. meds can't penetrate and help not until inflammation is brought down. I tried minocycline and had wicked side effects at 1/4 of 50 mg, within a week 4 separate times I developed: c-diff, yeast, and UT infections, also gave me bad insomnia and tiredness.
  13. catly

    catly Senior Member

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    outside of NYC
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  14. CallieAndToby

    CallieAndToby Senior Member

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    Have to retract my statements about NYU, have not been dropped. I am just unbelievably stressed and frustrated and the distance from them makes it harder.

    @Aerose91 can you send me a PM?

    Also, when taking an antibiotic how do you prevent things like yeast infections and c-diff? Seems to always be a problem for me. I take 3 different really nice probiotics.
    vli likes this.
  15. Aerose91

    Aerose91 Senior Member

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    100% guarenteed
    vli likes this.
  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I have a feeling the inflammation though is throughout the body. I have the lower back pain and neck pain now and ct scans show my spine is fall of bone spurs and shrunken disc spaces etc i said to my doc im just getting bloody old and he said that my back was alot older then me.

    I cant help but wonder if all the inflammation i have had from cmv etc has played a big part. I did read a few articles implicating infections as triggers for ankylosing spondylitis, and saw cmv implicated a couple of times?? The increased tnf and il6 which is shown in cfs/me and cause of alot of inflammation is also the big causes in auto immune diseases. Maybe it depends on where this inflammation hits is what we are left with??
    Valentijn likes this.
  17. lansbergen

    lansbergen Senior Member

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    So do I and the strange thing is improvement went from central to perifere.
    heapsreal likes this.
  18. Aerose91

    Aerose91 Senior Member

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    One of the doctors I saw told me that all fatigue is due to inflammation so being body wide would make sense
    NK17 likes this.
  19. Aerose91

    Aerose91 Senior Member

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    One thing that supports the brain inflammation theory as well is the frequency of low ADH in us. I initially had encephalitis and learned that encephalitis commonly knocks out ADH in people; not sure why that particular hormone but that would give precedence to the theory that our hypothalamus is part of the brain that is effected. I would like to learn more about this correlation
    vli and heapsreal like this.
  20. wastwater

    wastwater Senior Member

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    I read that book and felt it may have some interesting clues
    vli, merylg and Nielk like this.

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