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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. Simon

    Simon

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    Hi Womble
    This is very much an early finding that needs replication, not something that would be helpful in the clinic. I think it's too early to show to your neurologist or pain management doctor, though if the findings are independently replicated those replications would be worth mentioning. I'm afraid it would be another step again (probably a big one) from establishing that neuroinflammation is important in the illness to actually having a treatment.

    One to watch for the future, though.
     
    MeSci likes this.
  2. CallieAndToby

    CallieAndToby Senior Member

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    Last year I saw a neurologist at NYU, well 2 to be exact. We did a PET scan and found decreased metabolism through-out my brain, the radiologist was so alarmed she paged him and said, "I've never seen anything like this in a 20 - something female, this is what'd I'd expect to see in an elderly patient with severe Alzheimer's". They looked at extensive labs from UM and my pro-inflammatory cytokines were through the roof.

    They said they thought I had neuro-inflammation and we did CT scan which also came back grossly abnormal. I received a diagnosis of "primary autoimmunity and clinical encephalitis". These are not quack doctors they are NYU NEUROLOGISTS. My insurance covered an 11 day stay at NYU to get IVIG, I had 4 infusions, a lumbar puncture that went bad and that I still don't have results from, ended up with LP leak and stayed in hospital for 11 days - there was nothing more brutal than everything I went through.

    My insurance company cancelled ivig and have denied all appeals to continue, now my neurologist has dropped me as a result. We have PROOF of inflammation, not just in one spot, all over my fu**ing brain, yet I can't get anyone to help me. I contacted the Autoimmune encephalitis alliance and they recommended some doctor from mayo - I've been there 4 times and was told every time to see a psychiatrist.

    I do think I have M.E. but I also have terrible depression and OCD and insomnia, the diagnosis eventually became "neuro-psychiatric autoimmune encephalitis" but my records still say clinical encephalitis. Just thought I'd add my story to show and prove that yes we have neuro-inflammation and in my case I have all signs of auto-immunity, unfortunately it's making me deathly ill and I can't find anyone to help me or they don't know what to do; I really thought ivig would help but insurance won't cover it.
     
  3. Aerose91

    Aerose91 Senior Member

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    When I first got hit with encephalitis and subsequently M.E. I was seeing Dr Romeo Mariano in Monetary, CA, a psychiatrist who also practices neuroendocrinology. He was the first one to recognise my symptoms and pegged me 100% for brain. inflammation.

    He did state, however, that brain inflammation is a much different monster than inflammation in the body and described trying to stop it as akin to "trying to stop a speeding train without any brakes" He said that no matter what the initial offender, once microgliol activation reaches a certain level it can go on for the rest of your life unless direct action is taken.
     
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    thanks for sharing your story. Lumbar punctures are said to be painful when gone well, feel sorry that yours went bad, the pain must have been bad, hope they atleast treated your pain???

    So are u undertaking any treatments for this neuro inflammation? Im guessing some antidepressants would have anti inflammatory effects as well as certain anticonvulsants??
     
  5. Aerose91

    Aerose91 Senior Member

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    @Womble

    I also had various MRIs and MRAs which came back clear, but then went on to get a SPECT scan where it showed massive hypoperfusion. Much like
    @CallieAndToby stated, the doctor said he has never seen a case so bad, especially in a 28 year old. He said it was akin to mid-late stage Alzheimer's or dementia. However, as satisfying as it was to me to have validation of my problems it didn't help with any treatments.

    I then brought these results, along with the white blood cells in my spinal fluid found from a lumbar puncture, back to the neurologists that I saw at Yale (who told me I was a psychiatric patient) and they completely dismissed it. They told me that a SPECT and PET are completely unreliable and "will change if you have a bad hair day" They again referred me to a psychiatrist, this time because "your obsessed with symptoms"
     
    L'engle, Little Bluestem, vli and 2 others like this.
  6. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    All this makes me think its a waste of time to go to doctors to try to get help. I still can't fathom why proof of problems is dismissed as irrelevant, seen in the general population or psychiatric. I just don't get it.

    It's sad.
     
    SDSue likes this.
  7. searcher

    searcher

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    Dr Younger listed potential microglial inhibitors that he thinks may be worth investigating at the Stanford and IACFS/ME conferences. Other than naltrexone I don't think most have been studied in fibromyalgia or ME but I think several are very promising. For example, I know many people are using minocycline for its neuroprotective qualities. The list is split into prescription drugs and supplements (primarily from chinese medicine.)
    The full list is at http://forums.phoenixrising.me/inde...-me-21-march-day-two.29098/page-3#post-443598

    I have only tried a few items on that list and have found ganoderma lucidum (reishi) to be the most obviously effective. As an extra bonus, reishi also appears to increase NK cell cytotoxicity.
     
    Last edited: Apr 29, 2014
    L'engle and Simon like this.
  8. HowToEscape?

    HowToEscape? Senior Member

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    Another reason I get infuriated at the arrogant twits explaining that "Aren't you glad you have Obamacare/it would be so much better with single payer!1!". They like hearing themselves talk, but helping YOU is not anywhere on their mental map.

    You need a family member to help you fuss with insurance. It can be done, but probably not while having an encephalitic condition. I know I can't manage that level of bureaucratic combat.
     
    Little Bluestem and vli like this.
  9. Aerose91

    Aerose91 Senior Member

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    @CallieAndToby

    I'm interested in the facts hat your insurance covered some IVIG. If I may ask, what was it for specifically? Parvo? I also had/have encephalitis and would love to get IVIG for my parvo and m. Pneumoniae but I need a doctor to order it which has been impossible so far. I was admitted to Yale for 4 days and they sent me packing with a diagnosis of depression.
     
    vli likes this.
  10. Womble

    Womble

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    Wow, I'm speechless.

    How much evidence do they need before they recognize this as a legitimate medical problem?

    But yeah, it doesn't sound like any treatments are on the horizon for this, despite this new evidence.
     
    vli likes this.
  11. Womble

    Womble

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    Might encyphalitis be a way of explaining my pain syndrome at least?

    When the doctors ask me what kind of pain I'm having, and I just describe it as a "nerve ending pain" or an "inflammation", they act clueless.

    Maybe neuro-inflammation would clarify it for them? Cause it feels like my brain is burning, that is literally what it feels like.
     
  12. biophile

    biophile Places I'd rather be.

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    vli and Simon like this.
  13. Aerose91

    Aerose91 Senior Member

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    I honestly believe that conventional doctors, as good as they may be (and neurology is the ivory tower), just aren't aware that conditions like this exist. The only reason any doctors are studying it is because they are outside the box thinkers. If a neurologist hasn't read about this in a book then we must be making it up.

    For what it's worth- when I met with the doctor who reviewed my SPECT I asked him if he could take a guess at what he thought this pattern showed. He said it most definitely did not look like chronic fatigue syndrome but also said it didn't look like acute inflammation. His opinion was mitochondrial disease. However, take into account that my brain symptoms seem to be in the top 1%
     
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Most doctors no little about it unless it's affected them directly or a family member. Sad isn't it.
     
    vli and Kati like this.
  15. November Girl

    November Girl Senior Member

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    Many years ago I had the type of brainfog where I couldn't manage to think from one word to the next. When the brainfog was very severe, my chronic-headache-from-hell would go ballistic if I actually tried to think - i.e. remember a name or answer a simple question. I've often thought that this was the result of neural inflammation.
     
    SDSue likes this.
  16. taniaaust1

    taniaaust1 Senior Member

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    I had severe mono as a teen (10 weeks bedridden, I even passed out a few times due to it), I thou recovered from that only to then be hit with ME 10 or so years later. I do have severe ME just like I had severe mono so I can see a corellation ..but why the gap in my case? If it was going to give me severe ME why didnt it do so then?

    I though came to the conclusion that I my body was primed in some way before the mono and hence why I got so very sick then.. (I never got colds as a child) .. so I think there is something going on with that TH1/TH2 and something is causing an imbalance before we even get ME (or mono)
     
  17. taniaaust1

    taniaaust1 Senior Member

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    Im sure I have some kind of brain inflammation going on .. and it seems many things can trigger it eg chemicals, working my brain too hard etc.

    Yesterday I was trying to work on a letter but then had to stop due to the feeling I was getting inside my head, this happens to me a lot if Im doing constant thinking on something. Its similar to POTS in which you know you get that urge that you NEED to go and lay down (or you know something bad will occur) but with the brain thing instead its the urge that you know you need to stop doing something which is making you think too much and rest the brain (highly uncomfortable).

    This morning (maybe due to working on letter yesterday), I couldnt text a message on my mobile phone.. forgot how to work it as in how to put a space between words. I ended up contacting people to ask them how to text.
     
    SDSue likes this.
  18. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    As Simon has said, inflammation doesn't necessarily lead to cell death, but even if cells are killed, new ones can grow - even neurons. It was long believed that new neurons did not grow in adulthood, but now we know that they can. There is some info on this here.
     
    November Girl, searcher and Simon like this.
  19. lansbergen

    lansbergen Senior Member

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    As long as there are healthy stemcells anything can be replaced.
     
  20. taniaaust1

    taniaaust1 Senior Member

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    Ive been thinking more about this article and I wonder if the worst the brain issues is, the worst the inflammation in the brain may be?

    Another here and I were on the phone today discussing amnesia episodes with him saying how at uni one time he forgot where he lived or who he was and was having to go throu his wallet looking at his cards to try to work it out. Ive had similiar thing happen at times, my brain one time (after a perfume exposure at a petrol station) forgot where I'd lived thou I lived there for 17 years, I was stuck then and couldnt go home.

    Another time before I stopped working (no chemical exposure on this occassion), my brain stopped remembering where I was working thou I'd worked there for years.. I couldnt go to work for 3 days due to not knowing where I worked (and was too embarrassed to ring my boss and say "where do I work?").

    I'd love for them to do brain scans on us when we are having a severe brain episode when we dont know who we are or know our address or on the very severe ME group who are struggling just to be able to speak as surely even more would show up at such a time (probably quite shocking results!!!). I think my brain issues shift at times with the "inflammation"? not so bad at some times then others.
     
    November Girl likes this.

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