What do you think about the IDSA response?

What do you think about the IDSA response to all the comments on their facebook wall? Do you think they are going to take these comments seriously, or just continue to sweep Lyme under the rug like I read someone say in one of the comments.

Here is what they said on their facebook wall:

  • IDSA appreciates all of the passionate responses. Although we aren’t able to respond personally to each comment, we want to assure you that we take note of the input. IDSA’s member-physicians are concerned about the full range of infectious diseases, including HIV/AIDS, drug-resistant infections, influenza, tuberculosis and many others, in addition to Lyme disease. Providing guidance for excellent patient care is our goal, and relying on science and medical evidence is the best and safest way to achieve that.

    And also:

    Read the IDSA response to Dorothy Kupcha Leland, LymeDisease.org’s VP   here:


What I don’t understand is they say. “IDSA’s most recent clinical practice guidelines on Lyme disease remain current.”  Well where  is this current research that says Lyme is cured in three weeks of doxy?

Then they say, “All of our guidelines, including that for Lyme disease, are reviewed on a regular basis to determine the need for updating based on any newly available (and scientifically rigorous) evidence that would warrant a change,”  what evidence are they looking at? There is research, some done by their  own panelists that show lyme is chronic. Look here for some of this research. https://whatislyme.com/research-links/ Why won’t they recognize this research?  What research are they going off of? Just from googling Lyme Research I can find dozens of articles pointing in the direction of Lyme being persistant, but I am yet to find one that said it was cured in three weeks.

And the IDSA says: “Despite accusations by some to the contrary, it is simply untrue that the panel members who worked on our Lyme disease guidelines had conflicts of interest. All were completely transparent and none of them stood to gain from recommendations in the guidelines. In fact, they would have benefited more from recommending long-term (and expensive) antibiotic treatment.”

But if they don’t have any ties or connections to insurance, pharmaceutical, or any things else that would be a conflict of interest, then why would they benefit from prescribing long term antibiotics? Was that a slip out IDSA?

 After the IDSA started deleting a bunch of comments that Lyme patients were posting, a Facebook group was started called 

The IDSA question – all comments


 There was a team of people trying to collect each comment as it was posted but it was impossible to completely catch up. If you had one of your comments deleted please post it on the groups wall. We are trying to keep all comments in one place on Facebook.

Some people were also blocked from the IDSA Facebook wall. If you were blocked can you please comment on the group wall also so we can keep track of what they were deleting and who they were deleting. Thank you!


5 thoughts on “What do you think about the IDSA response?”

  1. Let’s review: all our most RECENT clinical practice guidelines on lyme remain current….. I would like to know in a very basic sense, who wrote these responses? The verbiage alone is ludicrous!

    Let’s start by dating the “most recent” material. When discussing any type of material, whether recent, fairly recent or semi-recent, most comprehensive articles or responses will at the very least include the latest date of “the research”, it’s author(s), the dates etc. This will alert people to the exact dates of said research and who authored it much like – information persons would probably need to know. Further, when answering suggestions that the process is not transparent, one would expect a comprehensive response as to who the panel members were and why they did not have conflicts of interest. One would expect a response that is direct, forthright with information attached!
    When presented with links to information – one would expect a comprehensive answer to the provided links. When presented with personal stories of pain and personal trials, one would expect at least a response to some of the stories……if an Association truly wanted to know the answer to a question presented to the public at large.
    Why else would a question be asked? And then basically – not answered.

    I think I know why my answer was deleted as it was fairly emotionally charged and unanswerable. It was: IDSA = I Disseminate Shmit Association, or IDSA = I Don’t (know) Shinola Association or even IDSA = Incredibly Damn Stupid Association.


  2. Why don’t they receive indictments for all the conflicts of interest in the beginning – criminals will face jail time at some point – but manslaughter is something they’ll have to live with. How many people were denied ANY care and died from their original conflicts of interest. I am glad I won’t have to face a judge like they will!

  3. It might be too late to help me get my life back, but I hope and pray that POSITIVE changes will be made for my children, grandchildren and every one else who unfortunately gets this rapidly growing disease. Please help us. People help our children.

  4. I would like my life back…. the life I had before I was misdiagnosed, mistreated, dismissed, ignored and laughed at while searching for someone to treat me for chronic lyme disease. Can you give us our lives back? If not, can you please change your guidelines so doctors are NOT afraid to treat us in fear of losing their license? I recently lost my lyme doctor because he was treating chronic lyme patients. Now there are thousands of his patients with no where to go. I was recently hospitalized for 2 days. The doctor who observed me told me I had fibro and needed to see a psychiatrist. He obviously never looked at my chart. My blood work showed there were many things going on in my body that neither fybro nor mental illness would cause. You have brought the fear upon doctors to treat those of us who need help to LIVE. WHY? I really do not understand. This doctor took me off my lyme treatment and I relapsed- now back at square one and VERY sick. Would a cancer patient be taken off their chemo? I think not. Would an AIDS patient be taken off their treatment? I think not. So WHY???? Why are you dismissing chronic lyme disease exists. If it is because blood work does not always show a positive result for lyme… well neither does fibro OR mental illness- yet doctors are so quick to diagnose us with things such as fibro, mental illness, CFS, Chronic Pain Syndrome, IBS, Restless Leg Syndrome, Carpal Tunnel Syndrome, etc-I do not believe those are shown up on blood tests either. Chronic Lyme disease is not only taking life as we knew it away from us but for some it is killing us. Please….. Please educate yourselves. Educate others. But EDUCATE the TRUTH about chronic lyme disease and NOT the mis-truths to save money for insurance companies. http://www.myblindspotjourney.com/

  5. To expect anything else from the IDSA would be insane. This is their standard go-to response for everything. What they really would like is for us to just disappear. We won’t.

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