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Flash of insight: Viral Meningitis

Discussion in 'General ME/CFS Discussion' started by picante, Mar 13, 2016.

  1. picante

    picante Senior Member

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    I had a jaw-dropping, smack-myself-on-the-head moment yesterday morning. A friend had posted on FB about a baby dying of viral meningitis because his parents didn't seek medical attention in time. So I looked up viral meningitis, not really knowing exactly what it was:

    http://www.meningitis.org/symptoms
    Suddenly I was looking at the symptoms from my EBV infection 23 years ago, at age 35:
    fever & vomiting (4 weeks later I was still nauseated by anything but Cream of Wheat)
    severe headache
    delirium
    muscle & joint pain
    pale skin
    rash a week after onset (full body)
    cold & hot
    couldn't stand light
    slept non-stop for many days, except to pee or throw up​

    In addition, I had a horrendous, red, burning sore throat and white stuff at the back of my mouth.
    A friend took me to Urgent Care after a few days, where they threw antibiotics at me, which didn't do anything. I actually had to insist on a mono test a week later.

    Curiosity prompted me to check for some association between EBV and viral meningitis, which I found here under causes:
    https://en.wikipedia.org/wiki/Viral_meningitis
    I also had shingles in 2012.

    I've been tested for both EBV and CMV antibodies in 2010 and 2012. They are high, especially the EBV early antigen (150) and EBV VCA, IgG (600).

    I have had chronic neck spasms & headaches as part of my ME/CFS for the last 23 years. And the orthopedist I saw for my low back pain was sure I had RA, based on my x-rays, but the tests came back negative.

    Why has no doctor ever suggested the possibility of chronic meningitis??

    Is it worthwhile to get this diagnosed? How risky is a lumbar puncture? Is this a procedure that has to be done in a hospital?

    @heapsreal, @ahmo (polio virus is on this list, too), @Gondwanaland, @Hip, @Eeyore
     
    Last edited: Mar 13, 2016
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  2. Gondwanaland

    Gondwanaland Senior Member

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    My husband had viral meningitis at age 18.:grumpy: Luckily he is easily helped by vit D.
    :hug:
     
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  3. JES

    JES Senior Member

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    Several types of viruses have actually been identified in post-mortem brain autopsies of CFS patients, so the idea of persistent chronic infection is sound. The problem is that most doctors from my understanding don't recognize a condition like "chronic meningitis", meningitis is just seen as something that you either recover from or die from. With a bacterial infection showing up in lab tests, the chances to get treatment is a bit better. Most doctors won't treat viral infections based on elevated antibodies unless the elevation is huge, at least from my experience.
     
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  4. alex3619

    alex3619 Senior Member

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    Meningitis is by definition acute. @JES is right, you either die or recover.

    However that says nothing about the damage caused by viral meningitis.

    I am a measles encephalitis survivor, but it never quite reached meningitis, though since I was not conscious for a week I cannot be sure. This was also 1968, and I have trouble remembering this morning.

    I can speak to encephalitis, which is also acute. Half die, a quarter get serious brain damage, and a quarter are presumed to be OK. I am quite dubious about that presumption. Subtle damage, or damage that worsens over time, might be very hard to identify and so be missed till long after the doctor loses contact with the patient, and that doctor will presume the patient is fine.

    Chronic issues are likely to be something else. This is still under investigation.

    I currently think a qEEG might be the best option to assess ongoing damage.I think much of this is too subtle for an MRI. Schizophrenia, for example, does not typically benefit. from an MRI, but the latest science has suggested its definitely neurological, but due to very fine scale damage that is hard to identify via scans. I have not investigated use of qEEG in Schizophrenia, but qEEG can show cognitive deficits. I think it might be useful in determining effects of viral damage to the brain, and its used for stroke patients.

    There is a suggestion that CFS might be due to chronic low grade disseminated limbic encephalopathy. This is still only an hypothesis, but there is some suggestive data.
     
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  5. SilverbladeTE

    SilverbladeTE Senior Member

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    Well I had meningitis as a youngster around 14 yeard old, probably viral because it was an outbreak in the area, didn't get hospitalized, I recall one person in the small country town suffered some serious permanent damage, blindness or paralysis??
    man that stuff SUCKS, felt like someone had put my head into a hydraulic vice and was trying to snap my neck backwards, while my head felt like it was inflating eternally and It was like BEYOND a headache into another frikkin universe, and couldn't stand even candlelight, was like searchlight burning my freakin eyes out, and "lost" 3 days
    etc etc
     
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  6. picante

    picante Senior Member

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    Holy crappola, have you ever found out what virus it was? Did a doctor diagnose you at the time? Why weren't you hospitalized? Was it lack of money?

    In 1992 I was still without health insurance, so I didn't go to docs much. But you'd think the 2 doctors I saw at Urgent Care would have suspected meningitis from my symptoms.
     
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  7. picante

    picante Senior Member

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    What kind of specialist would order a qEEG, alex?
     
  8. alex3619

    alex3619 Senior Member

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    Typically neurologists would order a qEEG, although some psychs might too. Its a quantitative EEG, that is an EEG with extensive computational analysis to calculate regional brain activity. I suspect most doctors can do it too, but the technology is so noninvasive and safe that you might just be able to order it yourself as it might not be regulated.
     
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  9. picante

    picante Senior Member

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    Thanks, alex. I have state employees' health insurance thanks to my husband, and I'm quite sure it would not cover anything I order myself :rolleyes:. I would think that my father's Alzheimer's plus my genetic risk factors would be enough reason to go to a neurologist.
     
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  10. alex3619

    alex3619 Senior Member

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    Here I could get a qEEG for about $300, just by booking at a clinic.
     
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  11. anciendaze

    anciendaze Senior Member

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    Here in Florida we have a problem with Eastern Equine Encephalitis, though most often this is passed by mosquitoes that have fed on birds rather than horses. This is said to be rare, but I happen to know a family which moved here at the same time we did, and had a child who had a battle with this. She survived, but never showed the intellectual precocity she had before. One reason this is considered rare could be that it is not a reportable disease, since direct transmission between humans is not thought to occur.

    This caused me to wonder how many people just take to their bed for a week, and never end up in hospitals. A successful immune response to the virus is not the end of the story. There is a book on a case of autoimmune encephalitis with truly appalling features not linked to any infection: The Girl on the Sixth Floor. This disease is considered extremely rare, but part of the problem may be that few cases have such remarkable presentation and few families are as diligent in supporting someone who appears to be literally possessed by demons.

    Added: I've now reached the point in that book where a definite diagnosis was made: anti-NMDA receptor autoimmune encephalitis. This could not have been diagnosed at all prior to 2007. It falls in the category of paraneoplastic syndromes. The truly remarkable thing here is that this could cause literally unbelievable symptoms right out of Stephen King, without showing up on an MRI at all. The scale of the neurological damage was too fine for present imaging technology, yet EEGs showed serious dysfunction. If the patient had not had a lumbar puncture with CSF showing many leukocytes the outcome would have been grim. I think the parallels with the disputed name myalgic encephalomyelitis are clear.
     
    Last edited: Mar 14, 2016
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  12. picante

    picante Senior Member

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    This article talks about autoimmune limbic encephalitis:
    http://journals.lww.com/neurotodayo...imbic_Encephalitis_Is_Increasingly_Not.3.aspx

    Wow. I keep wondering why I'm so blasted sensitive to free glutamic acid. It makes me feel drugged. If the glutamates were actually firing up my neurons, you'd think I would be agitated, not bloated up like a balloon and conked out :sleep:.
     
  13. SilverbladeTE

    SilverbladeTE Senior Member

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    No idea, I was too sick to ask questions or understand much
    NHS here so don't pay for medical care
    Perhaps because it was a viral outbreak they knew they could do little so hospitalization without needing intensive care would be a waste, infect others?
    Maybe the doctor was an asshole
     
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  14. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Sorry post came over more harsh than I meant it :p
    Honestly dont know WTH was going on back then, lost 3 days completely out of my head though I know I was at home, one memory of those days candle or a night light damn near blowing my head off in pqin
    Very very disturbing period, ick

    My mum had been a nurse, so maybe left me in her care
    We had very distressing (nonmedical problems) after that sothat period of time got messy
     
  15. Asa

    Asa Senior Member

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    @alex3619 Encephalitis (encephalomyelitis?) can be chronic with chronic (6+ months untreated) neurological Lyme (neuroborreliosis)? Right? (Just trying to understand.)

    Also -- and this has been on my mind awhile -- (addressed to anyone :)) I don't understand how post-infectious encephalitis (encephalomyelitis) looks different than ME. I experienced something akin to what @SilverbladeTE described, for what it's worth. (I understand we're a hetergeneous crowd.)
     
  16. duncan

    duncan Senior Member

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    Besides acknowledged etiology, I can think of no difference between Myalgic Encephalomyelitis and Lyme Encephalomyelitis.
     
  17. picante

    picante Senior Member

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    Hey, it's OK, I'm hearing it in my head with a Scottish accent, so it fits, :D.

    I wonder if your mum or anyone involved in that outbreak ever found out what the virus was. It must have had long-term consequences for more than one person! Some people here have had their illness triggered by the Hep B vaccine or a Hep B infection. Or by the live polio vaccine, which was still in use at the turn of the century in the U.S.
     
  18. picante

    picante Senior Member

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    Well, exactly. If there is an infection in the spinal cord, isn't that a type of myelitis? And an infection in the brain can cause encephalitis?
    If you still have the same infectious agent in the meninges 20 years later, then it's not meningitis? That doesn't make sense to me.

    Just trying to understand the various CNS infections.
     
  19. Hip

    Hip Senior Member

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  20. lansbergen

    lansbergen Senior Member

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    I think they mean it is only itis when the immune system responses to it. When it is just sitting there it is not itis.
     

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