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Lyme Disease Message Board

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lymesgal :wave:
I was on doxy for 3-4 days at which time i broke out and got worse. the er dr said it was a reaction of the med. he took me off doxy. A week later i got worse again. This time i was on iv rocephin 10 days. about 6 wks later still having problems, I was sent to infectionus disease dr. (remember 17 yrs ago they didn't know what they know now.) He put me in the hospital, ran mri scans which were normal. I was sent home to do the rest of that 10 day treatment. notice my treatments were too far apart to do any good. and I was not treated long enough.

The reaction i had while on oral doxy and was taken off after I had been on the doxy for just a few days caused what I now know was herx. I was having severe headaches, stiff neck and pain. fever. flu like systems. achy. chills

My dr who is a LLMD because of my coifections will treat me for 6 to 9 months on iv antibotics. sometimes 2-3 antibotics at a time. will alos in 2wks begin treatment for the Babesosis which takes a different med and about 2 months to treat. Bartonella takes a different one also and 1-2 mo treatment.

My dr believes in treating continously 2months past any remaining symptoms. Then go for a month and see if you start having a relapse while off meds. Then its trial & error to get it under control. Dr J says you can never be sure Lyme is really gone.

Remember most doctors do not have the necessary info to treat us much less discuss lyme disease with you. They try to turn the tables and make it our faults. When I think of all the different doctors, rehumatolgist for FM, orthopedic for neck, neuro for vision that led to possible ms. 2nd neuro worse than first. family physican. Every one of these did lyme test more that once. They never considered that I still had lyme and I was not tested for the co-infections. These drs made me feel dumb when I questioned the possiblily of lyme. I even went as far as having 2 surgeries on my neck which I know were probably not necessary. I know know lyme loves to get in cns and brain.

Get all the information together. Prepare yourself for battle. Fine a good llmd and get in to see him. Get together all medical records you might have on hand from you dr. Any film from xrays. Go prepared.

If I can be of help, please advise. Its not been a good day for me, so I am heading to bed. catch you tomorrow. prayers :angel: marsha

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