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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. soofke

    soofke

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    Dutchy
    then how long would it take for the entire brain to be replaced....?

    I'm sorry for actually LOL at this but I did.....and I also think that's some serious concern for real inflammation, which I have luckily not, my cells are fixing themselves and I have the at times overdoses of neurotransmitters to prove it.. (well not really, I asked the neurologist to test me but got snubbed ;()

    VanElzakker says it's unlikely to have inflammation without cells moving on to a better place
  2. lansbergen

    lansbergen Senior Member

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    Ages. But why do you think the whole brain must be replaced?
  3. Simon

    Simon

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    ah, That was where I'd seen it - your conference report! Thanks for this.

    Here's the study Dr Younger ran for Naltrexone for Fibromyalgia:

    Low-dose naltrexone for the treatment of fib... [Arthritis Rheum. 2013] - PubMed - NCBI
    searcher likes this.
  4. soofke

    soofke

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    Dutchy
    so the reason people die of Alzheimers is because they don't have ages?
  5. Simon

    Simon

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    This study did look at pain, and while they did find a correlation between the level of pain and the level of inflammation in the thalamus (but not other areas of the brain), this correlation was not statistically significant when the appropriate corrections were applied.

    One problem with small studies is that they lack the 'statistical power' to find all but the largest effects. It's possible that a larger study would find a significant correlation with pain (possible too it would find nothing) but these PET studies are horrendously expensive - so it might be hard to get funding for a suitably large study.

    They did find that the worse the neuroinflammation, the worse the cognitive problems in several areas of the brain.

    However that was comparing between patients, what you are talking about is a longitudinal study looking at changes in each patient over time. That would be a great idea and hopefully something that will happen if this field takes off.
  6. Legendrew

    Legendrew Content team

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    I was mulling over this again last night and wonder whether this 'multiple paths to the same destination' could indeed be very plausible. Think about the studies from the last few years certain ones such as the initial (and still ongoing) work with rituximab could point to the autoimmune path which we've already discussed, this would explain why some people seem to get a major and long lasting result from this drug (some of the initial trial patients are still healthy, as is Maria Gjerpe who campaigned for further work with the drug) while other got little to no help from it or even suffered more after the treatment. I wonder whether it may be a case of 'breaking the cycle' so to speak wherein B-cells may be producing the antibodies which stimulate the immune cells of the brain hence triggering symptoms.

    Similarly I've heard many people sing the praises of certain antivirals in helping their recovery yet others get no help from them although admittedly without there being any specific pathogen that we know of, antivirals are never going to show the same effectiveness when compared to something such as rituximab which is somewhat more specifically targeted...

    Obviously I'm making far too many assumptions here but it's an interesting line of thought and could explain why some treatments seem to have such an all or nothing effect.
    Last edited: Apr 30, 2014
    Little Bluestem, vli and Nielk like this.
  7. lansbergen

    lansbergen Senior Member

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    @Legendrew

    The superoxide scavenger I use also decreases autoantibodies in several diseases.

    The positive effect it has on the immune system could be the result of superoxide excess decrease.

    In one paper I read it stops superoxide production. If that is true the low SOD2 could get the chance to neutralise the superoxide excess.
    Last edited: Apr 30, 2014
  8. soofke

    soofke

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    Dutchy
    in part because after a while the cells the virus is in stop fighting back (or never tried in the first place) and go into rest-mode which makes them indifferent to whether there's a bug or not, they don't work anyway, and why indeed Ampligen par example stops being effective after 3-5 yrs

    I'm not even adding I thinks and imho's anymore, wastes of times ;P
    Last edited: Apr 30, 2014
    vli likes this.
  9. lansbergen

    lansbergen Senior Member

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    Well the med I use has not stopped working yet. I still improve slowly.
  10. lansbergen

    lansbergen Senior Member

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    Do you think the replace cells will not get affected?
  11. soofke

    soofke

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    Dutchy
    what are you taking?
    Last edited: Apr 30, 2014
    vli likes this.
  12. Mudhole

    Mudhole

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    CallieAndToby-

    Look into Ketamine infusion. There are clinics in New York that will do this for you. It's a cheap, safe drug that repairs fried brain synapses and works very well for depression as well.
  13. Nielk

    Nielk

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    Have any of you read the book "Brain on Fire" by Susanna Cahalan? It describes her journey with a rare autoimmune disease resulting in inflammation in the brain called anti-nmda receptor autoimmune encephalitis. Top NY neurologists did not believe that she was sick. Her brain MRI, EGG and bloodwork were all normal. (sounds familiar?) Even a brain biopsy came back normal. They thought that she was just psychotic and should be institutionalized.

    She was lucky that she finally met a doctor who actually "listened" and found antibodies in her cerebrofluid. he started treating her with immunotheraphy - Rituximab and steroids which eventually nursed her back to health.

    Although this seems to be an acute disease, ME has a lot of similarities and it is evident that inflamation in the brain whether chronic or acute is not easily diagnosed.
    L'engle, SDSue, taniaaust1 and 4 others like this.
  14. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    This is what Drugs.com says about ketamine.
    soofke likes this.
  15. lansbergen

    lansbergen Senior Member

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    Levamisole
  16. Mudhole

    Mudhole

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    And what, pray tell, does drugs.com say about aspirin, a drug that kills hundreds of people a year?
    Ketamine has been around for decades and is well proven to be safe when properly administered. It could help this poor woman immediately.
  17. CallieAndToby

    CallieAndToby Senior Member

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    florida
    Yep and I consulted with her neurologist but eventually got moved to someone else. Dr. N is the one who diagnosed me with neuro-inflammation. However, I think they're all too busy to help me and I live way too far away. I will say that I don't recall rituximab ever being mentioned by her or them, what I recall is: steroids, PEX, then ivig, and anti-psychotics at first. I don't know that there are a lot of similarities, just meeting patients there I clearly had the worst fatigue and that wasn't a huge complaint with the patients I met.

    They have seizures, paranoia, hallucinations, but there are different forms of AE. I am sure that rituximab is used though regularly for AE and I read about a woman who had post-natal depression - then anti-nmda auto-antibodies, Ritux. brought her into complete remission. I think this is a bit off topic b/c it is a discussion about auto-immunity causing neuro-psychiatric illness and I know people don't like to mention that with M.E.

    The researchers at NYU and Univ. of Penn believe that many psych. patients, especially those unresponsive to treatment, actually have autoimmunity and neuro-inflammation................. But the biggest question is, how do we treat all these patients? And I guess that's what people are wondering on this message board.
    vli likes this.
  18. CallieAndToby

    CallieAndToby Senior Member

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    Thanks. They are actually finishing trials with a nasal spray cousin-kin-drug to ketamine as we speak, for MDD. My doctor said we'll most certainly try it when it comes out. I would do anything for relief at this point and the cousin-drug (name escapes me) doesn't have the side effects....... I actually live really far from NY, but this is definitely something my mom has been looking into (nasal spray) - say it helps ocd as well.
    vli likes this.
  19. Tristen

    Tristen Senior Member

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    This is awesome, thank you Simon. I remember years ago attempting to convince doctors that my symptoms felt so much like inflammation caused by a CNS infection. Of course they thought it was somatic. When I finally got into a good me/cfs doc, his list of my diagnosis had right up top......Viral Encephalitis. Treating this brought much relief.
    Little Bluestem and Simon like this.
  20. Aerose91

    Aerose91 Senior Member

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    I had and still have seizures, massive, massive dissociation, psychosis, memory and cognitive problems, occasional halleucinations and intense headaches. I've had white blood cells show up in my spinal fluid, slowing on my EEG and hypoperfusion on my SPECT. I also have fatigue, PEM and all of the physical symptoms ME people do. However I have yet to find one doctor (functional medicine or neurologist) who has any clue what is going on with me. I have tried like hell to get checked out for all types of autoimmune encephalitis but I can't find a doctor willing to try
    vli likes this.

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