Online Mass Lyme Protest


Tell the CDC and IDSA what you think about their guidelines for Lyme Disease on their Facebook pages!! Tell them that change needs to happen in diagnosing and treating Lyme Disease. Tell them how you have suffered! PLEASE SHARE and let our voices be heard!

Centers for Disease Control & Prevention

Infectious Disease Society of America

Thank you for being active in Lyme Awareness!


5 thoughts on “Online Mass Lyme Protest”

  1. It is past time for the CDC and IDSA to revise the standards by which we receive treatment. I have chronic Lyme with co-infections and can not get treatment in my area. I have to travel from New York to Virginia to see a LLMD. Insurance does not cover the doctor bills. I have to fight with the insurance company regarding medications.
    My daughter was diagnosed after I was. Neither of us ever saw a tick or a bulls eye rash. So our window of being “easily treated” was never there. The CDC should look to the wealth of information that is available from the dedicated physicians that ILADS works to train with current research and information.
    Shame on the CDC and IDSA for acting as if those of us suffering with chronic Lyme don’t exist. This just makes an already difficult disease even more difficult to deal with.

  2. RAZZLE found this and posted on a lyme board: is a web archive of many websites going back to 1996.

    I wonder if old versions of the CDC’s Lyme info is up there?

    The page from Dec. 30, 1996 says:

    quote:Treatment and prognosis

    Lyme disease is treated with antibiotics under the supervision of a physician. Several antibiotics are effective.

    Antibiotics usually are given by mouth but may be given intravenously in more severe cases.

    Patients treated in the early stages with antibiotics usually recover rapidly and completely.

    Most patients who are treated in later stages of the disease also respond well to antibiotics.

    In a few patients who are treated for Lyme disease, symptoms of persisting infection may continue or recur, making additional antibiotic treatment necessary.

    Varying degrees of permanent damage to joints or the nervous system can develop in patients with late chronic Lyme disease.

    Typically these are patients in whom Lyme disease was unrecognized in the early stages or for whom the initial treatment was unsuccessful.

    Rare deaths from Lyme disease have been reported.

    Here is a link to the archives on Wayback.*/

    Click the year you want at the top, and then click on any date highlighted in blue to see how the CDC website looked on that date.

    [ 06-10-2013, 01:33 PM: Message edited by: sideways ]

    both found here:;f=3;t=032215;p=0

    thanks lisa 😉

    iowa activist, bettyg

  3. CDC and IDSA,

    WHY do you keep revising and HIDING your info on lyme disease and vector-borne diseases?

    We have folks who regularly check there and inform us that again you’ve DELETED valuable info OR changed it to another area; often very hard to find.

    YOUR IDSA GUIDELINES are a joke! There are so many things WRONG in there, but since it’s from IDSA drs, CDC treats them as GODS and believe every word they wrote.

    The IDSA has proof that it can take only TWO hrs. not 24 hrs. to be infected.

    IDSA’S 1 day of pills to 3-4 wks. MAX creates us CHRONIC LYME/CO-INFECTION patient….so unfair.

    WE patients didn’t ask to be involved in YOUR lyme disease war of ILADS VS. IDSA drs.

    There are brilliant minds in each group; GROW UP AND WORK TOGETHER AS ADULTS instead of 5 yr. olds trying to take away each other’s toys. HOGWASH.

    I just hate all the fighting and NAME-CALLING going on.

    Why did it take 35 years of hell for me to be CORRECTLY diagnosed out of my 43.5 years by 40-50 drs? UNACCEPTABLE.

    I don’t do facebook; so this is as close as it gets Lisa.

    LISA, thanks for the OUTSTANDING JOB YOU DO on your site; being USA’S organizer for worldwide rally/protest, and ALL THE COVERAGE/PHOTOS, ETC. of events worldwide.

    You give and give like the EVERYREADY BUNNY. thanks my friend.

    Bettyg, Iowa activist

  4. The perversion of this disease’s treatment is almost impossible to believe. After contracting Lyme, and several co-infections, I became involved with Lyme support groups, and I have literally been in contact with, or have heard Lyme stories from 10’s of thousands of victims that are so similar you would have to have a hidden agenda not to realize there is and epidemic out here that has been growing for decades ! The worst part of my story is that one of my daughters has also tested positive, she is doing pretty well now but there is always the worry that she could take a turn for the worst. I honestly don’t want anyone else to have to go through the stigma and guilt that this disease may not be real “according to the CDC”. We need better research, testing, and treatment now !
    Dave Marsh

  5. Thirty something years of burying this disease is long enough. The time to act and do something about is now. We must address correct information on where the disease is possibly transmitted – which WOULD BE EVERY STATE IN THE NATION. Enough of the IDSA two tiered test – its inaccurate and leaves a lot of people in the negative category when they are positive. It took me one year of antibiotics to assist my immune system enough to make me CDC positive and this was done by numerous labs not just one. So out goes the false positive baloney. Whole families are suffering with no hope in sight as to the lack of a definitive protocol. Doctors wouldn’t leave someone hit by a mac truck on the side of the road – Why are they doing it to the people who afflicted which such a debilitating illness.

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