West Nile does look a lot like CFS

Discussion in 'Fibromyalgia Main Forum' started by lrgatplay, Feb 7, 2007.

  1. lrgatplay

    lrgatplay New Member

    Considering its another virus I'm not surprised.
    However my son Jordan doesn't quite fit the pattern.
    Even though he has been diagnosed positive for West Nile

    But I Thought some here might find this interesting.
    If you have not been tested for this.
    I found the following info.
    There is still no 'treatment'

    West Nile Virus Infection Commonly Has Long Term Effects
    Your chances of having long-term effects as a result of West Nile Virus (WNV) infection are the same, regardless of whether your infection was mild or more serious, say researchers from the University of North Dakota School of Medicine and Health Science. The most common long-term effects are depression, tremors, fatigue, memory problems, extremity weakness, word-finding difficulty and headaches.

    Since WNV arrived in North America in 1999, it has become the most common arboviral infection in the continent. Before this study, very little was known about the long term effects of WNV infection.

    (Arboviral = Any virus transmitted by arthropods, such as mosquitoes and ticks, that can cause encephalitis, yellow fever and dengue)

    You can read about this new study in Clinical Infectious Diseases, September 15 issue.

    The researchers examined 49 patients who had been infected with WNV 13 months after they had been diagnosed. Some had had West Nile Virus fever (mild form) while others had developed encephalitis and meningitis.

    The researchers tested the patients' quality of life, functional ability, level of fatigue, level of depression, and cognitive function.

    The researchers found that there appeared to be a substantial amount of ongoing symptoms, both among those who had been diagnosed with West Nile fever as well as those who had had more serious diseases.

    24 (49%) of the patients went on to have long term effects, regardless of the severity of their disease, said the scientists. One quarter of them went on to have moderate to severe depression, over four fifths experienced fatigue, and one fifth had tremors.

    Dr. Paul Carson, team leader, said he hoped the study may raise awereness that WNV poses a substantial public health threat.

    Long-Term Clinical and Neuropsychological Outcomes of West Nile Virus Infection
    Paul J. Carson, Patrick Konewko, Kimberly S. Wold, Paul Mariani, Sunil Goli, Paula Bergloff, and Ross D. Crosby
    Clinical Infectious Diseases 2006;43:723-730

    Physical Health
    Difficulty walking
    Joint pain
    Muscle pain
    Muscle weakness
    Stiff neck
    Cognitive Health
    Loss of concentration
    Loss of memory
    If nothing else, a diagnosis might bring a little more legitamacy. I imagine these people have some of the trouble getting help and services. They look well.

  2. swedeboy

    swedeboy Member

    Thanks for the post.
    I am wondering if someones CFS started before 1999 then would the possibility if it being WNV be very low?
  3. lrgatplay

    lrgatplay New Member

    Have you been tested for West Nile?

    If I remember from your posts you've traveled quite a bit.
    There are also associated mosquito virus things.
    St.Louis encephalitus, Red River virus, etc.

    I wonder if it would still show up on a blood test if it caused the problem many years ago.

    Doc told us Jordans infection showed he'd had it within the last month. don't know how they tell that. Back in Aug. when he first started getting really sick. But he'd been having sinus problems before that and he had a pattern throughout childhood. In hindsight.

    One way or another, the treatment or lack thereof is the same. They don't have any known anti-viral for it.

    Doc has decided to withhold meds right now so we're going to have a fight.

    Have a good day.

  4. lrgatplay

    lrgatplay New Member

  5. Lichu3

    Lichu3 New Member

    I had a lumbar puncture when I first fell ill since I had a headache and myalgias as part of my presentation. My ID doc tested for West Nile in CSF then (had a history of mosquito bite) and retested me recently with bloodwork. Negative both times. I didn't have fever, nause/vomiting though that sometimes present with WNV and didn't suspect it in myself but she wanted to test anyway.

    WNV doesn't cause post-exertional malaise as far as we know.
  6. lrgatplay

    lrgatplay New Member

    Thats what I mean about Jordans symptoms not quite matching the description of WNV. Though he did test positive. So contributory at the least.

    However, I found a site with posters reporting illnesses including post exertional malaise.

    I just thought this was important, as WNV and Lyme are implicated in these same types of illnesses and the treatment modalities are the same. Except for various anti-biotics etc. that are known to possibly treat Lyme.

    More people here may have WNV. The CDC reporting is shoddy.

    Jordan did not have fever, nausua or vomiting either.
    But was on anti-biotics and steriods at the time for sinus issues. Unless he actually contracted it way earlier and became susceptible due the above treatment. Wish I knew.

    Just wanted to put this info out.

    Better days.

  7. rockyjs

    rockyjs Member

    I contracted West Nile in 2003. While I've had chronic fatigue most of my life, for the eight years preceeding my West Nile infection I had been doing very well and was even working as a personal trainer.

    Many people test positive for WNV who never even knew they had it. And even those of us who developed meningitis and encephalitis often did NOT get a fever. However we all did have severe headaches and other symptoms related to neurological damage. And many of us seemed to recover then had a relapse a few weeks to a few months later that was even worse than the original symptoms.

    Post exertional malaise is absolutely seen, sometimes for years. Some had paralysis (I had bulbar paralysis which was caused by damage to the cranial nerves). Some just had flu-like symptoms but never seem to get better. Many of us had elevated Epstein-Barr titers during the initial infection which may have contributed to the damage.

    As far as antibodies, my initial tests came back negative and my infectious disease doctor said that about 30% of his patients never did develop the early antibodies (IgM) but later showed the IgG antibodies.

    The most persistent symptoms (3+ years) seem to be fatigue, cognitive problems, depression and neuropathy with pain and/or numbness.

    West Nile is still a puzzle to most doctors and treatment is based on individual symptoms, like Neurontin for nerve pain for instance, rather than a treatment for the virus. There is one protocol that has been used by a company called Genomed that seems to be quite effective, even months after the initial exposure. It has to do with using common blood pressure medications which seem to normalize the immune response.


  8. lrgatplay

    lrgatplay New Member

    Thanks for the additional info.

    Just seems like a band of brothers to me.

    I had read that about the Genomed treatment. There site was down when I tried to look it up. But I had thought it was only used during the initial infection.

    Do you know anyone who has tried it?

  9. rockyjs

    rockyjs Member

    I have seen a couple of reports on West Nile forums from people who have improved. I believe on man even started taking it two years after his initial infection.

    If you go to Genomed's website you can e-mail Dr. Moskowitz or even call him. He's very eager to help by sending the protocol for your doctor (they don't have a product to sell). The doctor can then prescribe the medication recommended.

    I saw significant improvement after taking an herbal preparation called Saventaro, but the pain in my legs didn't let up until I moved to a higher altitude which helps suppress an overactive immune system. I really think much of what we're seeing long-term is an autoimmune response to the virus.

    I did develop myositis/fibromyalgia about a year after getting West Nile. I'd had CFIDS but no FM before that. My rheumatologist said that the brain damage messed with my ability to block and process pain signals so my pain threshhold is much lower than before. I still don't take any medications but I definitely experience pain from exercise and exertion.

    One good thing about WNV...apparently researchers found that those of us who contracted the neuroinvasive form have a resistance to HIV infection and that there is some sort of genetic component involved. Go figure!

  10. monicaz49

    monicaz49 New Member

    hmm..now i want to get tested. lol
    to add to my list of unclear diagnoses. cfs, fibro, depression, lyme, candida, now this. lol
    my doc prob thinks im a hypochondriac that needs to get off the computer and stop thinkin i have everything. But truth is im very sick and need to find out!

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