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Post by LymeEnigma on Sept 18, 2007 16:00:39 GMT -8
The “Lyme Wars” must end if we are to see any change in the way our disease is viewed and treated by the mainstream medical community. In order for this to happen a number of changes need to occur. Some of these changes we, the patients, have no power in effecting ... but there are some changes that we can make that could potentially trickle up to those who do have the power to effect change, changes that could make diagnosis and treatment more readily available to everyone.
It is time we take a stand and truly take charge of our health. It is time we demand the truth. It is time we demand the IDSA redraft its guidelines again once Columbia University’s Lyme Research Center staff has published a few more papers on the subject. I predict that they, and perhaps also similar groups, will find some benefits to antibiotic therapy for chronic Lyme, but I fear the results will be limited. Hopefully they will be able to do more controlled studies on patients treated for multiple years, although – again – I fear that the results might not be exactly what most of us expected. I believe treatment is out there, but I also believe much more research needs to be done before anyone can claim to know enough about Lyme to be able to write any viable treatment guidelines on the disease, the IDSA included.
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Post by LymeEnigma on Sept 18, 2007 16:01:59 GMT -8
Change #1 We must demand that those who are willing to treat our Lyme disease using means that go beyond IDSA guidelines do so with the utmost of integrity and only to the extent their formal training allows. We must demand that those who offer questionable practices, such as Immune Response Training, Applied Kinesiology, and other scientifically unproven diagnostic and treatment “protocols” see justice for the damage they have done – not only for the physical and financial damage they have done to their patients, but to the dark smudge they put on reputation of the Lyme-literate community in whole. With this in mind, we must also demand that those who would provide misleading information, no matter who they are, answer for their misdeeds without leniency. Dr. Stricker recently played with semantics in a letter written to a number of government officials to make it appear as though over 19,000 articles contain evidence of the existence of chronic Lyme. But, believe it or not, this is not the first time he has been misleading.... According to a quote by Durland Fish in the much fussed about Hartford Courant article ( www.topix.net/content/trb/2007/08/state-joins-dispute-over-lyme), Stricker “fabricated an article in the New England Journal of Medicine. He provided false results. The paper had to be retracted. He was banned from [National Institutes of Health] funding for a period of time.” Why did the Lyme literate community respond by turning Fish into a straw man, rather than addressing the fact that Dr. Stricker, the man leading ILADS, had been caught, red-handed, lying about medical data? What does this say about the integrity of ILADS, as a whole? What does it say about us?
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Post by LymeEnigma on Sept 18, 2007 16:03:05 GMT -8
Change #2
Certain changes absolutely have to be made to the IDSA’s current guidelines. We can say whatever we want, but the IDSA isn’t going anywhere and we aren’t going to negate their guidelines with a separate set, written despite them, even as flawed as the current guidelines might be. Changes that have to occur:
1. The IDSA needs to acknowledge the importance to early detection and treatment. With that, it also needs to acknowledge the unreliability of blood tests and the fact that people can catch Lyme in non-endemic areas. People need better access to early diagnosis and treatment.
2. The IDSA needs to acknowledge the fact that persistent and chronic Lyme disease are possible manifestations in some cases that are diagnosed and treated late, and/or that there may exist some strains of Lyme disease that may be more antibiotic resistant than others.
How we might do what we can to effect these changes:
1. Support scientific, peer-reviewed research on the disease. The only way we’re going to gain the knowledge needed to manage chronic/post Lyme disease is by doing what we can to ensure future research.
2. Take some time to actually read and compare the different scientific studies being used to back each stance. Be as educated as you possibly can be, reading articles from as many IDSA, ILADS and neutral sources as you can, so you can be firm in what you are fighting both for and against. While you read these various studies, make sure you ask yourself: How do these studies differ? Who (if any) is not fully referenced? Who (if any) uses circular referencing? If there are papers that do not reference every “fact” they state, or if you find two articles referencing each other over the same “fact,” then you might want to question the validity of those sources ... and, trust me, they do exist – in droves.
3. Research any “calls to action” you might receive from different Lyme advocacy groups. Make sure you understand petitions you are signing, and make sure you aren’t buying into spin or misleading statements when you are contacting state and federal officials. Support calls to action that promote research funding and Lyme awareness.
4. Demand that more funding go out to educating the mainstream medical community on diagnosing and properly treating both early and later stages of Lyme disease.
Lyme advocacy groups have been fighting the mainstream, to no avail, for over twenty-five years. Maybe it’s time to try something different?
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Post by cobweb2 on Mar 6, 2008 19:06:10 GMT -8
I propose that even pharmacists learn more about the two protocals.
I'll never forget the first script I tried to have filled-and the well meaning pharmacist was quite alarmed and would not fill it because of the high dose.
He did check with the doctor, and I ultimately got the script, but I remember his comment about how he had NEVER heard of such a dose , nor read of such a dose, while in pharmacy school.
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Post by LymeEnigma on Mar 8, 2008 9:15:45 GMT -8
I propose that even pharmacists learn more about the two protocals. I'll never forget the first script I tried to have filled-and the well meaning pharmacist was quite alarmed and would not fill it because of the high dose. He did check with the doctor, and I ultimately got the script, but I remember his comment about how he had NEVER heard of such a dose , nor read of such a dose, while in pharmacy school. If you'll remember, I had a pharmacist actually call to "check up" on me after so many months of antibiotics ... I felt like I was being treated like a drug-seeker. There definitely needs to be more education across the board.
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Post by itsybitsyone on Mar 10, 2008 9:13:36 GMT -8
You message is logical, LE. Not everyone appreciates logic.
I do, thanks.
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Post by LymeEnigma on Mar 10, 2008 9:34:02 GMT -8
I appreciate the fact that you appreciate that. ;D
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