Ummmh, what to do now?

[Guest guest]

Hi everyone,

I have been on minocycline 200 mg MWF for about 1 1/2 mths. Noticed

the first week some strange symptoms, bad headaches, lethargy etc.

and assumed them to be the herx. However, this all pretty much

subsided. I originally went to Dr. Franco for my consult and then

had one phone conversation where he recommended the above

prescription. I have gotten my rheumatologist to prescribe the

antibiotic treatment after a lot of lively discussions. He is always

quick to say that there is no clinical proof that this will help

dermatomyositis, but only early stages of RA. Anyways, the other day

he suggested that i do the minocycline 7 days a week. As he said, if

you are going to do it, you may as well really go for it. I told him

that IV treatment was the next step, and he thought it was crazy,

that no one would even give it to me since it is so out there (and of

course i would pay for it out of pocket). My question is, if there

is anyone out there who is doing this 7 days/ week, are days off

needed to ensure not building up a tolerance? And while i know

everyone is different, can i still get good benefit w/o the IV

treatments? I have had dm for 10 years, which i know most people say

is longterm. I have left a phone message with dr. Franco, but i must

say, that i am disappointed with his follow through. I expected a

lot of him from all his praise, but he seemed so busy when i went to

him. And it was difficult to get him via phone. Do the people who

see him from out of town, just go down to see him regularly? I was

under the impression that many see him once a year or so, and then

communicate via the phone. I feel a bit " left " in the lurch, and my

doc here, tho i really like him, isnt a major proponent of the

antibiotic therapy. I would appreciate any suggestions, thanks in

advance! -Star