CDC press conference

Discussion in 'Fibromyalgia Main Forum' started by lrgatplay, Nov 10, 2006.

  1. lrgatplay

    lrgatplay New Member

    Did anyone watch or read the CDC press conference? I'm new hear and have been reading like crazy to get a grip on my sons
    recent illness. He has been suffering for up to 3 months with what seems likely to be CFS. He is 15. Thru testing the doctor found the West Nile Virus and said he'd probably contracted that within the last month. We had been seeing the doctor repeatly prior to that for sinus infections and increasing frequency of seasonal allergies. He was on about his 4th round of antibiotics and 2 steriod injections plus one round of oral prednisone. Coincidentally, he had his required for school DPT shot in August.
    I have noticed that some people feel that these shots may in
    some way be implicated in some of the CFS cases.
    And the CDC mentioned CFS patients going and getting flu shots.
    Is that really recommended?
    Just wanting to do the right thing for my son and for the sake of awareness. I figure if I get a good start the prognosis for him may improve.
    PS Our doc said the treatment for West Nile is nothing and that recovery could take up to a year. But upon reading up
    on that, a lot of the West Nile details are comparable to CFS and some even more extreme. My son still fits the CFS patterns as far as I can tell. If I used the rating(?)I'd say he it currently about a 30. I'll have to find that again to see.
    Hope I'm doing this posting ok.
    Haysville, Ks.
    Wichita where 2 of the studies mentioned were located.
    Thanks for all the info by the way.
  2. lrgatplay

    lrgatplay New Member

    I just came across some articles about that chronic wasting disease myself. I was poking around local tv on the internet to see if anyone had covered the CDC press conference. Nada. That I could find.
    Thanks for the comment.
  3. NancyMystic

    NancyMystic New Member

    And welcome to the community, though I'm sorry that the reason you're here is your son's illness. You're a loving mother and a smart one, too, to be exploring all the resources like this.

    You'll find lots of information and lively discussion here on the forum, about the CDC press conference and your other questions too, by using the Search box under the purple bar at the top of the page.

    Check out the Library tab above the purple bar for articles about CFS/CFIDS/ME.

    Also, have you found the CFIDS Association website yet -www.cfids.org

    And the CDC website for coverage of their press conference - www.cdc.gov

    Happy reading, and I look forward to seeing more of your posts.

    Nancy
  4. NancyMystic

    NancyMystic New Member

    I'm with you about the bats. Restoring & encouraging the healthy balance of nature would really help prevent disease.

    Nancy
  5. lrgatplay

    lrgatplay New Member

    I've seen a few of those bats around here. Perhaps the population will grow. And bees. I think someone around here has or had a hive.
    Need to get back to some of that nature myself. I'm having to seriously replan priorities right now to make it all work.
    I was just joking with my son, the nightowl, that he needs to learn to live like the dogs. You know, good circadian rhythm, run around a bit all day, bark at the door, take a nap, run around outside take a pee, take a nap, eat & beg food, and nap again. I told him he could leave out a few of those hings of course.
  6. lrgatplay

    lrgatplay New Member

    "Influenza. If a patient has any medical condition that could be severely affected by an attack of the flu, such as heart disease, asthma, or bronchitis, influenza vaccine should certainly be considered.

    My own data indicates approximately 60% of CFS patients experience some form of exacerbation in their fatigue and flulike symptoms (sometimes quite marked) following an influenza vaccine. "

    Still wondering why the CDC comments about CFS patients getting flu shots.
  7. jmcdelaney

    jmcdelaney New Member

    Irgatplay,

    Have they tested your son for lyme disease or any of the other tick born viruses? I am not a great source for lyme, but I do know the symptoms can be very similar to FM/CFS. I also know that there are several tick born viruses. They seem to be popping up all over the country now. What I don't know is that if the antibiotic he is on would take care of the tick born ailments or not.

    Joann
  8. lrgatplay

    lrgatplay New Member

    I think was tested for Lyme several weeks before the test for West Nile. Seems all the same to me regardless. He is on nothing at the moment except supplements, probiotics, diet, etc. Early yet, but hoping to see improvement.
    Seems to be sensitive to medications, so am trying to be very careful. Was feeling good during the prednisone treatment, but don't know if thats good in the long run.
    I did long term alternate day prednisone myself for many years.
  9. victoria

    victoria New Member

    A good LLMD might try a therapeutic trial of abx since Lyme is a bacteria.......... tests are unreliable, even the CDC says the clinical picture is what should count.

    But the chronic lyme treatment is a community divided, there are 2 standards of care... there is a lyme board here btw, if you click on message boards up above you'll find it and lots of info.

    My son also got the symptoms of CFIDS at 15, progressed to FM, had obvious signs of problems that doctor couldn't ignore; in his case it was low BP and low pulse and loss of weight that he couldn't afford. 'Regular' blood tests showed nothing wrong, internist didn't know what to do.

    Due to my reading and my response to the protocol I'm on, I figured Lyme was a good possibility... he came up CDC positive on 2 tests 6 months apart...

    but many do NOT come up positive until after being treated with abx for a while. This is because Lyme spirochetes can go inside even white blood cells, tissue cells anywhere, etc... also form cysts with immature spirochetes in order to hide out. These 2 defense mechanisms allow it to hide out from our bodies, plus their replication cycle is 28 days (compared to 20 minutes for strep, approximately).

    Another to get a LOT of info is ilads.org - they also have links to other sites to get good info, including to find an LLMD that is willing to treat more than a very short cycle of abx.

    My son has been in treatment for 18 months now... is slowly making headway. Some are lucky and find relief immediately, others take a long time.

    Hope this helps and hope you take some time to read about the possibilities. These symptoms overlap with a lot of other diseases, like hemochromatosis, something else he should probably be checked for...

    all the best,
    Victoria

  10. lrgatplay

    lrgatplay New Member

    I will look into more of the Lyme. He is/was a hunter with his father and we live in an area where there are ticks. And of course the mosquitos for the West Nile. I'll have to do a search for the "abx"? And what is and LLMD?

    Sorry about you and your son. I just get teary when I think about the life they're missing and the things they/we have to go through.

    My son is however a very easygoing person. He has yet to complain. Although he does tell us to quit being so loud sometimes. Kinda hard for my husband and other son to do! I think they are toxic sometimes.


    Ok- duh- abx antibiotics. He was feeling better was talking biaxin and prednisone.[This Message was Edited on 11/11/2006]