Letter by the president of the IDSA

[wonko]

I think it is more important to focus on health over politics.  But for anyone interested, here is a letter written by the president of the IDSA.

http://jme.bmj.com/cgi/eletters?lookup=by_date&days=60#2422

[JackieCalifornia]

Well, that's interesting.  The program automatically blocked my use of G er so n 's name.  Fill in the blanks above.

[JackieCalifornia]

There, in ******'s response, is the backbone of the beast we are up against:  willful ignorance and blind indifference, cloaked in sanctimony and indignation.  If we don't have symptoms that fit within the IDSA definition of Lyme, then we don't have Lyme.  Full stop.  They are not concerned with our welfare, only their own.

When I see posts by new people here in this forum, it's clear they have been to a doctor who has read the IDSA guidelines, because as a professional organization, it is expected to be a trustworthy source of diagnostic and treatment guidelines.  It's like buying the cookbook of a famed chef who has trained at all the best culinary schools:  you naturally rely on the book to tell you accurately how to make an omelette.  If however the chef has only ever cooked using ostrich eggs instead of chicken eggs, something is going to be off about that recipe when I make it at home with chicken eggs.

When my omelette turns out badly, the chef replies:  "I don't know why your omelette didn't work -- the ones in my kitchen came out fine.  You must have made a mistake."  And that is the end of that.

The initial understanding, diagnosis and treatment of Lyme was so restrictive that it appears IDSA is simply standing its ground, frozen in that earlier time, repeating over and over that based on the fixed IDSA definition of Lyme, we don't have the disease, we are not their concern, and they are therefore not neglecting or ignoring us.  Limiting the definition of the disease to early stage Lyme that shows up with a rash, with a tick, and on ELISA and W. Blot allows the IDSA to ignore those outside that narrow group, thus clinging to their tiny island of definition and refusing to see anything beyond, including the suffering patients like us.  What do they think we have?  They don't know, and it's not their concern because we clearly don't have Lyme *as they define it*.  By their standards, they are doing nothing wrong -- it's an old trick, like setting up a scholarship with recipient parameters so narrow that only your own kin can benefit from it.  Think how foolish (and worse) the IDSA would look to back down now; if it weren't for the suffering out here, I would take pleasure in anticipating the coming resolution.  Their response is predictable, however:  they will call what we have, say, Schmiggle's Disease, something *clearly* different from Lyme, because Schmiggle's symptoms are different from the [IDSA-defined] Lyme symptoms.

****** confirms the allegations she seeks to refute: they did exclude MDs who already did not agree with the IDSA, and they did ignore peer-reviewed articles they deemed insufficiently rigorous because those articles came to conclusions contrary to the IDSA position.  Hey, who you gonna ask if you want someone to agree with you?  People that you already know agree with you!  

Bottom line is, the beast is still out there, but we have ILADS and open-minded physicians who treat us, the patients, in order to first do no harm.  Let's just keep plowing ahead and not let this get us down.  

[patsy10]

That was really a negative article.  My question is the same one SOONERMOM asks.  What is wrong with us then?

[SOONERMOM]

It's really sad and disturbing that the IDSA is using it's position and influence to deny and attack us.  If it isn't chronic lyme, then WHAT IS IT???  They can't ever seem to answer that question or do anything to help us.

Sorry, look at all the studies that show that lyme can persist despite treatment and add to that the ones that show the autoimmune aspect of the antibodies that our bodies produce against borrelia.  What a nightmare.  I feel like my body is one experiment gone wrong that the mainstream doctors don't care to figure out or address.

As for the phrase "do no harm"...how about all the months I spent looking for a diagnosis and being told all the while that lyme didn't exist in my state.  We all know the importance of early treatment.  What about my friend who was given 5 days of steroid drips even though she had numerous positive lyme tests??  She has NEVER gotten back to what she was before all of that.  Now she is in a wheelchair AND has brain lesions...this only happened AFTER the steroids.  (yes, I had warned her and she knew the risks...she was just so desperate to get better and believed the neuro could help her do that)

Give me a break, they act like THEY are the ones that are looking out for us!  Even though this letter is from the IDSA, I think most mainstream doctors feel the same way about any lyme diagnosis that isn't cured with a few weeks of abx.

There IS more to all of this, they just aren't interested in exploring it.  There is just no way that so many of us end up in this position especially when we were so normal and active with our lives beforehand.  I didn't just go crazy at 38, 2 years after moving out  in the country and being subjected to numerous tick bites.  Not to mention that one of the former owners of this land shot and killed herself out here because of a chronic illness that was diagnosed as lupus back in the 80's.  There is a family across the street that tested positive for lyme(she was initially told she had MS and he was told he had ALS)  and their next door neighbor has an MS diagnosis.  I recently was told that I have 3 new brain lesions...still not typical for MS (or migraine),  

OKAY so what is wrong with me??? All I have is a CDC positive western blot for lyme (@16 brain lesions and 1 O-band in CSF).  The only doctor that has helped me feel "normal" again is my LLMD.  The ID Dr. told me he couldn't treat me for neuro-lyme because it would be considered "too controversial".

I guess this "rant" is just to say that it is easy for Ms. Gershon to sit in her ivory tower and say that chronic lyme doesn't exist and doesn't need to be treated.  She is certainly welcome to come camping on my 17 acres and see how her life proceeds afterward.  I have a nice spot for her where all the deer like to hang out.