Guest guest Posted May 28, 2004 Report Share Posted May 28, 2004 In a message dated 5/29/2004 1:44:13 AM Eastern Standard Time, peonyproud@... writes: I saw my ra. Dr. today and told her I would like to try the minocycline treatment. She was so discouraging. She probably wasn't any worse than most of them. Mine was just downright rude and arrogant and all but threw the literature back in my face. In fact he did slap away with his hand one printout I held up. This is NOT what they learn in medical school and NOT what the pharmaceutical companies promote. I went to every website I could find to back up what I'd read in books. I must have read 50,000 pages in my quest. Even though I have a definite brain fog from my bushel basket full of diseases, I am not stupid and I have degrees too, just not in medicine. Even my husband who is all but medically illiterate (in spite of the fact he has designed and built many pharmaceutical plants around the world as a registered architect), has read much of the information I've found and saw definite hope it the antibiotic protocol. He knew I was dying on the drugs offered by the rheumatologist, and I think he felt guilty because he was the one who found him in the first place and encouraged me to see him when I was so sick and we didn't know why. While I am not in remission or " cured " , and I've only been on antibiotics for 3 months now, I feel like a different person. I'd been on Remicade for a year, Methotrexate for 2+ years, and prednisone following shots in the joints, and I started having serious infections plus many other side effects. The answer from my rheumy was even more bad drugs in higher doses. It only made me worse. Plain and simple, he told me the antibiotics didn't work but prescribed it anyway because I had such seriously swollen glands he was afraid I had developed lymphoma and wanted me to have a biopsy. He refused to address my yeast problems, never told me probioitcs would be necessary with the antibioitcs, and had me use over the counter drugs for the the " sicca " (never saying sjogren's syndrome which I had to investigate on my own). In short, so many things it's not profitable for them to waste their time even discussing. I have found a doctor which addresses all my health issues and says it's time I was no longer jerked around by the medical profession. If you can't find a doctor through references here and other places such as the Road Back Foundation, check with the holistic doctors in your area. Osteopaths also are generally more receptive to the AP as well as some general practitioners. You owe it to yourself to have a fighting chance. Don't give up hope! Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2004 Report Share Posted May 29, 2004 <<...told her I would like to try the minocycline treatment. She was so discouraging. She told me it did not give relief to many people. I am taking plaqunil and I think I should contine this. She prescribed 100mg 2x's a day, but is this not too much? >> Rhonda, Do not let you Dr. talk you into giving up! You must try the AP. My Dr. was skeptical, but at least professional, and let me give it a try. He was amazed at where I was 6 months later (in remission), and continue to be 4 years later! I saw him in Dec. and he now prescribes AP for patients and is seeing " surprising " results. This is a rhuematologist! He reads the literature and has seen the studies, so he is becoming more open, maybe even convinced it's the way to go. *I* was the one amazed at his turn around! LOL I started at 100 mg x 2, daily, and found it was too much. I decreased to twice a day 3 days a week, still too much. I've been on 100 mg 3 days a week for about 4 years now. Seems to work well for me. Each person is probably going to be somewhat different in their dose, but seems like every other day is sufficient. M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2004 Report Share Posted May 29, 2004 Rhonda...............Nothing ventured, nothing gained is my motto. I too was told it would not work, but since I had talked to several pharmacists and was told it had almost no side effects, I decided to try antibiotic therapy anyway. Lucky for me I did try it as I was one of those who went into remission fairly quickly. I have no doubt I would now be in a wheelchair if I had stayed with traditional meds. Nice thing is you can stay on your meds while giving it a try. That way you can sort of give it a try without compromising your regular treatment. Some months down the road ( if things go good) you can reevaluate the need for traditional meds. It is really a win-win situation. As far as the dose she put you on ....100 mg twice a day. That is what I went on for 6 months. Now I am on just Mon wed Fri, 100mg once on those days. Life is pretty good, an occasional aspirin I can live with!!! Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2004 Report Share Posted May 30, 2004 I'm not free to post my rheumy's name without his permission. For now, suffice it to say that he's in Bismarck, ND. There aren't many of them here (2 men, 2 women) so he should be easy to find. LOL A phone call to the office with a question to his nurse would verify if you have the one that prescribes antibiotics for RA. Anyone in the area can contact me and I'll refer privately. Quote Link to comment Share on other sites More sharing options...
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