posted
Over the last few years my neurological symptoms are getting worse and worse.
I haven't been able to get any infectious disease doctor to treat me with a long course of antibiotics-
they tell me I should have been fine after a short course of doxy.
My internist will prescribe doxy for a year now, but says it will help as an anti-inflammatory more than treat lyme.
Has anyone recovered using oral antibiotics and if so what did they use?
Or are neurological symptoms only helped by IV antibiotics?
I'm scared-I cant feel my left side anymore- even my face.
[ 24. February 2007, 02:14 AM: Message edited by: she7 ]
Posts: 35 | From st. Louis | Registered: Feb 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi She.
So sorry you're experiencing this. An ID doc is rarely helpful, as you've found. Any chance you can get in to see an LLMD?
It sounds as if you have neurological manifestations - i.e., Bell's palsy or facial numbness is one of those.
IV is preferred by some LLMD's; however, many will try you on a course of orals first.
Doxy has good blood-brain penetration. However, it ought to be in the 300-400 mg/day range; lower than that is only bacteriostatic (inhibits them) rather than bacteriocidal (kills them).
An LLMD would add in other drugs as well, most likely a cyst-buster like Flagyl and Tindamax after a time.
Another reason to find an LLMD is to be tested for coinfections..you don't want to skip that (I did, and what a mistake!)
Glad you've found a nice internist. Maybe he would take a look at the ILADS treatment guidelines and work with them?
Best,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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I'm relatively new at all this. First, I would second all that Michelle said.
My fiance has had many neuro symptoms, and has gotten the most improvement from Minocycline, which also penetrates the blood brain barrier. This was after nearly a year of other antibiotics. He has recently added Tindamax (also mentioned by Michelle, I think), to address the cyst form of the Lyme bacteria. This has also helped with his cognitive clarity. Both are taken orally.
You really do need to find a LLMD who understands the need for long term treatment. I see you're in St. Louis, which means you're only about 3 hours away from Dr. C in MO, who is one of the very best. We drive 8 hours to see him! Perhaps you could look into seeing him? Feel free to PM me for more information.
Hang in there, Aviva
Posts: 532 | From southeast US | Registered: Oct 2005
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Yes, go see the doc in Missouri.
Personally, I don't think taking Doxy for a year will do a lot for you. Doxy was good for my husband, but only for a couple of months. You need to change up the ABX to get rid of this stuff.
Just my .02.
Best wishes.
Posts: 1366 | From Southeast | Registered: Sep 2005
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