LYME research funding bills -- REMINDER- SIGN PETITION

Discussion in 'Fibromyalgia Main Forum' started by victoria, Sep 25, 2006.

  1. victoria

    victoria New Member

    Please see my post on the Lyme message board here (click on the link up above "Message Boards", then click on 'Lyme' -

    it's about signing a petition and/or writing your Senator and Representative in Washington DC to help get the Lyme bill out of committee and to get it passed.
    ----------------------

    "Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2005.” (S.1479, H.R. 3427)

    you can read and sign the petition online at: http://www.petitiononline.com/lyme/



    Some facts you might not know:
    According to the CDC, approximately 95% of vector-born disease is Lyme or associated tick-born infections... It is endemic in the Northeast and Great Lakes States and has been reported in all but one state in the US; Less than 5% is West Nile Encephalitis (WNV).

    ... yet which one has been studied more and do you hear more about?

    In 2004, the CDC reported 19,804 cases of Lyme - CDC & NIH total spending was only $33.6 million. In 2004, the CDC reported only 2,539 cases of WNV, yet CDC & NIH total spending was $77.6 million!

    ---------------

    There have been so many at this board turning up with Lyme and co-infections as the underlying basis of their CF/FM... you never know, you might have it too. I hope you will support it. The easiest way for those of you with little energy is to sign an online petition.

    Thanks much,
    Victoria





    [This Message was Edited on 09/26/2006]
    [This Message was Edited on 10/04/2006]
  2. victoria

    victoria New Member

    ALL D.C. offices (congress or Senate) can be reached toll-free here:
    MAIN CAPITOL SWITCHBOARD:
    1-888-355-3588

    Call/write your U.S. House members and urge them to co- sponsor bill HR 3427. Visit
    http://www.congress.org
    to find out who your representative is.

    Call/write your U.S. Senators and urge them to co-sponsor bill S.1479. Visit http://www.senate.gov/general/contact_information/senators_cfm.cfm
    to find out who your senator is.

    Remember, every 'regular' letter counts for at least 40 voters - phone calls count for more - but if nothing else, an email will work as will a signature on a petition. We need to participate to not only help ourselves, but friends, and families, even if it is only to send an email.

    I sure hope some are doing this... I see where someone else has come up positive with Lyme...

    all the best,
    Victoria

  3. victoria

    victoria New Member


    - is nobody reading this? Please help keep it bumped, it IS important!

    Victoria

  4. mrdad

    mrdad New Member


    Will do that. Once again thank you for keeping us all
    aware of all new developments on the Lyme front. My
    Daughter started Grad school on Monday in earnest and
    continues to do well. You take care of self and Family.

    Sincerely,
    MRDAD
  5. webintrig

    webintrig New Member

    waiting on my results ...Does anyone know how long it takes to get the results back? Done at lab where I live.
    Thanks in advance and I went and sign the petition...so keep bumping..I just saw it...
  6. webintrig

    webintrig New Member

    on the Lyme Board or has it been on any of the other boards?
  7. victoria

    victoria New Member

    MrDad - hearing about your daughter's progress always keeps my hopes up for my son!

    Webintrig: I put it on the Lyme board here...

    I'm assuming you had the Western Blot done?
    I don't know how long it takes necessarily, I've heard different time frames; for my son it took 3-4 weeks to get Igenex testing results thru Quest...

    did you ask your doctor's office or the lab? Usually they'll give you an idea... and then they may or may not have the policy of telling you the results over the phone.

    Let us know what happens tho?!

    all the best,
    Victoria

  8. webintrig

    webintrig New Member

    If you have just FMS and your dx for Lyme Disease does this mean you no longer have FMS?

    Questions, questions, questions....

    Thanks for answering and sharing.

    Looking for answers.

    Soft hugs,

    Victoria

    I will let you know what the outcome is on the test. I tried to explain to my dr. about false reading...but she just ignored me.

    I also have other results coming in on my other condition which those take 10 days which will be next wk.when I get those results.

    Thank you for caring and sharing![This Message was Edited on 09/27/2006]
  9. dellie

    dellie New Member

  10. victoria

    victoria New Member

    everyone has a different answer for that question, webintrig! LLMDs and many pts will answer "no" - it was lyme +/or co-nfections all along. Other will say 'yes,' still.

    I tend to side with the first answer... just because of medical history of other great masqueraders such as syphilis and TB - the dx of those diseases EACH cleared up over 100 thought-to-be-separate diseases = over 200 diseases total. The treatment with penicillin of syphilis of schizophrenic pts in mental hospital wards cleared 2/3 of them!

    The important thing to remember tho is that Lyme is rarely by itself - the LLMDs say the probability is that you will have other tickborne coinfections, like bartonella . . .

    and then there are opportunistic other infections, viral/bacterial in origin... lots of stealth pathogens who know how to hide out in our bodies lots better than we know how to find, much less get rid of them.

    Just my opinion, and others' as well...

    all the best,
    Victoria

    PS: Thanks for the bump, dellie!

  11. webintrig

    webintrig New Member

    I would never got tested either. So thank you to you and others for posting about Lyme.

    I guess I thought maybe it would be just something simple but the way things are going with me it is not just simple...

    Much love,
  12. jarjar

    jarjar New Member

    That people are grabbing the bull by the horns and hopefully getting the Igenex Western Blot to find out if this is what causing them to be ill.

    There is a Doctor in Houston that has CFS/FM as well as about all of his patients. Once he became lyme aware he as well as the vast majority of his patients tested positive with the proper testing for lyme. Of course it is a clinical diagnosis also.

    Remember that most lyme patients don't even remember being bit by a tick. In my case I was bitten often as a child. But one can be infected by mosquitos also.

    Thanks Victoria for posting!

    Jar
  13. victoria

    victoria New Member

    It IS nice to know that those of us that keep on posting reminders about Lyme etc do have an effect sooner or later - guess the operative word might be 'eventually'.

    It is nice to be able to help pass on the info to others - if it hadn't been for this board/site I wouldn't have known about the marshall protocol....

    and also because of my response to doing the MP, and the increasing number here posting about the fact they were responding to treatment for Lyme for CF/FM,

    I would never have known where to go to get basic info and how to find an LLMD to take my son directly to when it became obvious something was very wrong with him.

    So I in turn thank everyone at this board and the site for keeping on giving information and sharing diagnoses and protocols!

    All the best,
    Victoria


    [This Message was Edited on 09/28/2006]
  14. Cromwell

    Cromwell New Member

    I do think there has to be some link. So yes.

    Love Anne
  15. victoria

    victoria New Member

    I really don't think enough credit is given to these nefarious little critters, lol........

    bumping for the night owls. You never know, you yourself might get this dx or a dx of a co-infection.... at any rate this bill has the potential to help a lot of people thru furthering knowledge!!!

    Thanks all,
    Victoria
  16. victoria

    victoria New Member

    for the weekenders who maybe haven't seen this...

    and to remind anyone who hasn't done this yet!

    THANKS!
    Victoria

    "If you think you're too small to have an impact, try going to bed with a mosquito in the room." -Anita Roddick


  17. victoria

    victoria New Member

    still important...
  18. suzetal

    suzetal New Member