Now Forming Illinois Lyme Disease Network

Discussion in 'Lyme Disease Archives' started by munch1958, Jan 30, 2008.

  1. munch1958

    munch1958 Member

    I've met a partner who is angry as I am about Lyme Crymes going on here in Illinois.

    We don't want to take this garbage anymore.

    Together we are going to try to get a support group off the ground.

    Here is our website. We hope to have a forum up called the Lyme Zone working soon.

  2. mollystwin

    mollystwin New Member

    I'm going to check out your website!!


    Went to the site. It's great!! Let us know when we can join the forum. Are you going to be a moderator?? [This Message was Edited on 01/30/2008]
  3. munch1958

    munch1958 Member

    We haven't gotten that far in our planning. We haven't even figured out more than our short term goals. First we need to file the paperwork for a 501(3)C.

    We hope to get a letter to the Govenor for a proclamation declaring May as Lyme awareness month. Put together some flyers and biz cards etc.

    Then we can go about the arduous task of attempting to educate doctors who do not consider it to be part of their differential diagnosis/ Erroneously they've all been led to believe Lyme isn't an issue here.

    We'd also like to get some notices in the newspaper as public service announcement and/or press releases around IL in the heavily populated areas that also have established tick populations in all life stages.

    The problem with our tick map from the Dept of Public Health is they are only tracking Ixodes scapularis or the deer tick. It would be so much easier if people doctors would compare notes with vets.

    We know we have Borrelia lonestari or Master's Disease here. It's not the same strain as the Lyme CT strain. Thus far the CDC wants to call it a "Lyme-like" illness. This will be a huge uphill battle.
  4. mollystwin

    mollystwin New Member

    This sounds like a big job!! When I have more energy I plan to become more active in our state as well.

    Good luck and thanks for all you do!!

  5. munch1958

    munch1958 Member

    The money part of this will be hard. We'll be operating on a less than a shoe string budget.

    I'd like to look for a job. One that willl allow me to
    wear PJs to work on those bad days. At least the bad days are now like the good moldy old good days. There are fewer and fewer bad days.

    We're still not done with my treatment so I don't want to take on too much too soon. All of this anger about having my life stolen by a tick needs to be channeled.
  6. StacyS

    StacyS New Member

    Hi Munch1958,

    I met PJ on the other site we chat on and he gave me your info b/c he says you are more versed in many of the issues with Lyme and co.
    I think he copied you when we wrote a few times back to introduce me.
    Anyway that was real nice of him and I hope to be able to write to you too.
    Is there a way to PM here or only public posts here?

    If not I think you may have my e-mail so feel free to write me that way and we can chat if you have some time?

    Thanks and way to go with the start of the Ill. support group. I grew up in Ill. for many many years until I moved.

    Just wanted to say hello
  7. munch1958

    munch1958 Member

    Hi Stacy! Another new member. Welcome.
  8. cherylsue

    cherylsue Member

    Wow! Cool site. Did you do this yourself? I'm impressed.

    Fellow Illinois Lymie,

  9. StacyS

    StacyS New Member

    Hi PJ and Munch,

    Thanks for the site and for welcoming me.