posted
Hi, have recently been diagnosed with lyme and have just sent off blood for testing of co-infections.
Have all the information on Chronic Lyme and also Infectious Desease treatments. There is no doubt in my mind that for me this is a progressive illness and I hope to be in treatment by the end of the month.
My questions is can anyone point me in the direction of any trials or studies done by open minded researchers as to patients getting better on long term antibiotics.
Thanks and regards maps
-------------------- 1999 CFS, 2002 CMV Myco pneumonia 1 year antibiotics on and off 2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics Posts: 328 | From somewhereelse | Registered: Apr 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
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I may be jumping way ahead here but, usually, in any medical trial they are testing ONE drug.
If you have lyme, you will require a COMBINATION of drugs. And the longest trials to date have been far shorter than the 30 week' minimum treatment that some ILADS authors say is necessary.
And, if you have other tick-borne infections that are common for lyme patients, you will require even a different combination and rotation pattern of drugs.
In addition, very few lyme patients get well without particular supplements to protect and support their liver and adrenal system.
If you were in a controlled study, you would be prohibited from taking any of these necessary supportive measures.
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Do you ask about a study so that you might get the very best advantage with a new drug . . .
or so as to be able to obtain treatment due to a cash flow situation?
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Either way, there may be some other ways to work this out. I would hope that you could see an ILADS-educated LLMD (not an IDSA affiliated doctor as they don't usually take lyme seriously).
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You might check with the Columbia University Lyme Research Center in New York. I don't know the exact name of that but Brian Fallon, (MD or Ph.D. ?) is the head of that.
He's the one who did the last study but, again, that was with a single drug and only for either 12 or 16 weeks - still too short of a time but that's all they could get regarding approval and funding.
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