What's with all the secrecy

[troysmom]

So after some suggestions from the board, most recently PhilC, I decided why not check into the Lyme theory, it's been almost 7 years since my son was diagnosed, maybe the LLMD's can share soemthing with me that no one else has, my son has all the very clear signs of DM and yet doesn't respond to the treatment for DM.

So I asked a trusted friend of mine who is in medicine if she could recommend anyone locally who is LLMD and this was how she started off her answer “they won't say it out loud but I know of two people”…….

So my question is what is with all the secrecy?

[luvmywonderfulkids]

Hi Troys Mom,

I am Sue, Ryan's Mom and Ryan was diagnosed with MCTD, Scleroderma and / or morphea. We also had him tested for lyme the “normal” way and they said it was negative, so I wanted to dig deeper and paid for the IgenEx test and even then, IgenEx said he was negative although he had 3 positive bands and 2 indeterminate. because of this, I asked for further testing on band 31 and sure enough, he has lyme! Continue pursuing this!

That is what I am most nervous about is this disease is sooooo political but thanks to those that came before us, I do feel that it is much more in the open now.

Thanks to everyone on this board because without them, I never would have even thought that he had lyme!

Sue

[Parisa]

Troysmom,

Lyme disease is unfortunately a hugely political disease.  At the time Lyme was discovered a very narrow definition of Lyme disease was created – actually the investigator responsible for this definition was convinced that it was an autoimmune process and had a hard time letting go of his preconception of the disease.  Second, in order to create a vaccine they stripped the Western Blot (Lyme test) of the antibody bands that correlated to the vaccine.  By stripping those bands off the test, they eliminated a significant portion of bands that Lyme infected indviduals tested positive to.  Thirdly, managed health care became big business around the same time that Lyme came into the picture.  Insurance companies decided to protect themselves from the cost of Lyme treatment by getting doctors to create very narrow guidelines on how to diagnose Lyme (with a Western Blot that is useless) and to treat with a protocol  of antibiotics limited to a couple of weeks that is only effective for acute Lyme.  By acute Lyme, I mean Lyme caught within the first couple of months.  Due to poor testing, most Lyme patients become chronic and need long term antibiotics.  The insurance companies report the doctors who treat outside of these guidelines to medical boards and doctors have lost their licenses.  This has driven the whole treatment process underground.  There is movement underfoot for change – the Infectious Disease Society of America had a hearing a couple of weeks ago to see about revising its guidelines.

Welcome to the upside down world of Lyme.  To understand it better, watch the movie Under Our Skin and read the book Cure Unknown.

[hopefull]

Hi Troysmom,I live in maine as wel.I've started the search for either a Ap or LLMD.
I have RA…for 8yrs with little response to meds.I would love some input from
someone in Maine re;the above Dr and/or practioners.Hope you can help.If you
can send me back a private reply with your email,I”l l do the same and maybe
see how close we are.That's if you feel comfortable of course.Such outstanding
news about your son…what a little trooper.Gob Bless,Kathy

[Cheryl F]

If you have any way to see the movie, “Under Our Skin” you will understand the answer to the question “why all the secrecy?” Some doctors willing to treat Lyme patients have been prosecuted and pursecuted for doing so. Their careers and lives are on the line. There are AP doctors facing the same, right now. It is a shame.

Cheryl

[Maz]

Parisa, I couldn't have said it any better….so erudite and right on. Thanks for chiming in with the Lyme controversy 101. 😀

Troysmom…below you'll find the link to the IDSA Lyme hearings on July 30th. As you watch (a full day of presentations) it will become fairly clear just how diverse opinion has grown re: Lyme and the brave physician/scientists who fight on our behalf to treat us in the face of such oppressing opposition. Lorraine Johnson's presentation is probably a good start…she outlines pretty much the heart of the controversy. She worked with CT Atty Gen Blumenthal to ensure that the original Lyme treatment authors faced the music with some pretty astounding conflicts of interest that they still shamefully deny.

Instead of it becoming a fully fledged legal action, the first of its kind against any medical society in the US, the IDSA settled “out of court,” so to speak, agreeing to this one day hearing and revision of the treatment guidelines with a new panel of guideline reviewers who were screened to ensure they had no conflicts of interest (consulting for insurance companies for large sums, being paid as expert witnesses in cases brought against targeted LLMDs, would not be steering guidelines to support their own research and research that agreed with theirs, would not block research re: chronic Lyme from being published in peer-reviewed journals, did not have interests in Lyme testing kits, vaccines, etc, etc, etc.)

http://webcast.you-niversity.com/idsaArchives/

The Lyme controversy was covered in the RBF Fall eBulletin and you can clcik on links in the text to learn more:

https://www.roadback.org/EmailBlasts/ebulletin_fall08.html

Fortunately, the “secrecy is gradually lifting as states, like CT, RI and CA have set precedents in state legislation to protect LLMDs from bring targeted for treating chronic Lyme patients longterm. Basically, LLMDs in states where there is no protection are having to still fly below the radar, but hopefully they, too, will be afforded protection….but we all await a revision of current IDSA Lyme treatment guidelines with bated breath…hopefully by the new year.

Peace, Maz 

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