Discussion in 'Fibromyalgia Main Forum' started by chopindog, Nov 18, 2005.

  1. chopindog

    chopindog New Member

    I am wondering if there are others out there who have had viral menngitis, and more so if the meningitis brought on the CFIDS. Joy
  2. ellie5320

    ellie5320 New Member

    I had viral meningitis but it was 33 yrs ago so cannot remember much except I was very ill in hospital
  3. rockyjs

    rockyjs Member


    I had West Nile Virus encephalitis/meningitis. It's been two years now and I'm still struggling with the after-effects.

    Any brain damage can cause chronic fatigue. It was helpful to me to get neuropsych testing to determine what areas were most affected, but nothing has changed the fatigue. My doctor wanted me to try Provigil - I think it's better to let my brain continue to heal and not push it into alertness when it wants to rest.

    When I'm really tired (which doesn't take much) my legs also hurt and I get paresthesias which feel like bees stinging me. No one can explain it other than to say it's misdirected signals to the nerves caused by the brain damage.

  4. lovinlifeinAK

    lovinlifeinAK New Member

    no one knew what to do with me. They told me I would have no lastings symptoms because of it. Well I believe I do. As all this pain and suffering first started 4 almost 5 years ago to the date. Which is 3 months after my daughter was born.

    No one has been able to give me a correct answers so far even though I have been healthy my whole life.
  5. Mikie

    Mikie Moderator

    At the time, I didn't know I was sick, but in retrospect, I have had these illnesses all my life.

    Love, Mikie
  6. justlooking

    justlooking New Member

    I had both mono and meningitis within 2 years of each other and I believe the mono left me succeptable but the meningitis finished me off.
    I was just 11yo(mono) and 13yo(meningitis)give or take a year on each my memory is fuzzy now-a-days. the mono had me down for about a month and then when I got meningitis, I was hospitalized for over a week but couldn't leave my house for over a month after. They thought I was going to die.
    The Dr did tell me I would have life-long problems,
    I was basically told that the meningitis caused damage to the base of my brain where it meets the spinal cord and whenever I got sick (colds, flus, etc) I would feel it it that area first. That ended up being true for many years and then when I was 28, I began to get cycles of fatigue and migraines that would last for months. The full on body pain didn't come until I was 32.

    So my belief is that the menigitis has played a major role in my getting sick!

  7. victoria

    victoria New Member

    was told when I was 18 (now 54) I had it along with mono, started getting headaches 4 months after I found out I had mono... but was told it was a kind that is associated with mono, don't know how it's different or what it'd be called?

    They told me that this was a somewhat common thing when one had prolonged mono, that it was not infectious, and that it would take about 3-4 months for headaches to peak, and then another 3-4 months to slowly go away.... which they did, exactly to that schedule!

    It was hell with the daily 24-hr headaches as I couldn't take any painkillers as I had bad reactions, very distracting to say the least! I was in college and had to drop half my classes to cope... looking back, I wish I'd been able to just drop out for a while to get better.

    I DO feel I have never been the same since I had the mono/meningitis/hepatitis... altho I've never showed up with active E-B since.
  8. chopindog

    chopindog New Member

    Interesting! For the first 6 months after the meningitis I used to talk to people on a meningitis web board.Mostly everybody on there were having long term effects and complaints. All of them sounding very much like CFIDS and FM. Also many of them ended up with Mono sometime near the meningitis. I lived in colorado and In 2002 we got hit hard by west nile virus. I was a RN and took care of many of its victims, who also had after effects very much like CFIDS. My infectiouse disease doctor also told me that she had found that many of these pts with west nile ended up with positive mono,EBV in the months that followed. Strange how they are all so related! Joy
  9. silky17

    silky17 New Member

    me that was what he thought I might have. I asked if we could test for it and he said it was a very painful test to get. Was it or how were you diagnosed? I know my headaches were so bad at times I could have taken a whole bottle of Vicodens. Thank God I never had them. What does it feel like to have it?

  10. rockyjs

    rockyjs Member

    Very interesting about the EBV. My first test for West Nile came back negative but my EBV titers were sky high. My infectious disease doctor (Nelson Gantz in Boulder) told me that 50% of his patients tested negative for West Nile for the first three months.

    I later read that both EBV and West Nile infections are modulated by CD8 T Cells (related to serotonin). I started taking 5-HTP and did improve a bit but it's been two years now and the fatigue is still constant. However I have never been diagnosed with fibromyalgia. I have muscle pain and nerve pain, but it doesn't fit the pattern of FM.

  11. justlooking

    justlooking New Member

    The test your Dr is probably referring to is the lumbar puncture also known as a spinal tap. The Dr goes in your spinal cord with several needles to numb it and then a long one to extract spinal fluid. I've had 3 of them at different times in my life, all due to the meningitis and the after effects. I can't say they are painful as much as VERY uncomfortable...not something I would want to do willingly.

    However, I think the only time the bacteria, virus or anti-bodies will show up in the spinal fluid is during the meningitis, so if you had a spinal tap now its unlikely it would show anything, unless you currently were infected with it.

    [This Message was Edited on 11/20/2005]
  12. chopindog

    chopindog New Member

    Want to hear about a small world? I too went to nelson Gantz in boulder. I actually never saw him, but I saw his nurse practitioner. I am from Longmont, Co. I was a cancer nurse at Longmont united hospital. That is were I got the meningitis from my Pt. I went to Dr. Gantz because my infectiouse disease Dr. in longmont was fighting the workers comp claim that I got it from the pt. She stated that I didn't come into intament enough contact with the pt. BULLS#$%! Anyway I was so sick that I didn't end up fighting the workers comp thing. The long term dissability through my work was approved, so I just gave it up. I then lost my job and my insurance so I never saw Dr Gantz again. I did not know that about the late west nile virus results. That is interesting! Thanks for writing, I hope you see this reply. Joy
  13. rockyjs

    rockyjs Member


    It is a small world! I have seen Betsy, too. Several months ago Dr. Gantz found out he had metastasized colon cancer and I don't think the prognosis was very good. He's such a wonderful doctor and it was his report that got me disability.

    Sorry you had an awful time with Worker's Comp. I hate it every time my husband writes a check to them for his company because I know no one will ever benefit from it.

    Here's another small world story for you...I used to be an artist rep in Loveland and was meeting with an artist (Bo Bush) and his wife who is also a nurse at Longmont United. We started talking about where we grew up, and when she mentioned Illinois I told her that I had gone to a great girls' camp there when I was in jr hi. She said she had, too, and it turned out to be the same camp, the same summer. I had been filing some old photos recently and remembered my cabin leader's name, and she said, "That was mine, too!" So I ran and got a photo of my cabin mates and sure enough, there she was. What are the odds!

  14. chopindog

    chopindog New Member

    That is crazy. I am so sorry to hear about dr gantz, he really did seem like a good and caring Dr.! Just goes to show none of us are immune from trajedy. I wonder what the name of the nurse is that you are talking about. I just may know her also! My mom amd some of my other family live in loveland. My best friends mom is a art teacher for the saint vrain valley school district and is well known amoung artists in that area. Maybe you know her? Her name is Cheryl Barnett. It's fun to talk to somebody who knows and lives in my home. I was born and raised there, and miss it alot!Talk to you soon, hopefully! Joy

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