Guest guest Posted December 9, 2010 Report Share Posted December 9, 2010 , The one thought I have for you is that I wonder if it could be Lyme. I had very severe dermatomyositis, and Minocin or doxy alone (and even IVs) could not fully overcome it. It helped the disease a lot, and my labs came way down, but the disease kept migrating and changing and was never fully eradicated. I finally learned about Lyme and was able to connect all the dots. I had to add in Flagyl (metronidazole) and do many courses of that, in addition to staying on Minocin. Hope this helps and that you find what you need! On Thu, Dec 9, 2010 at 10:25 AM, <eson@...> wrote: > > > > Hi group, > > In Jan. 2000 I started Minocin 100 mg 5x a week. In 6 months I went into > remission. Eventually I decreased to 3x a week. > > The last few years my labs have shown underlying disease, but no symtpoms. > Last Dec. I changed to Doxycylcine 100mg because my nailbeds were turning a > blue color, presumably from Minocin. My thumb nailbeds are still blue, the > rest are ok. A month later I decided to try 2x a week, since I was doing ok. > Withing a month I started have redness, swelling, pain recurring in hands, > wrists, and shoulders. Then to my feet. > > I saw a new rhemy in Oct. familiar with protocol. She looked at x-rays I'd > had done over the previous 15 mo., magnifying them many times on the > computer, and showed me where I had mild bone erosion in some places. Lab > work still all negative. She gave me a Kenalog injection, which helped a lot > over the next few weeks, and increased Doxy to 5x a week. I go back in > March. If I'm still having trouble then she wants to start me on Plaquenil. > > I am having trouble. Fingers, shoulder and feet continue to swell and be > painful. The spot rotates, but something is always bothering me. Front of my > rt. shoulder is swollen, like a bursitis. Rt. collar bone and a/c joint are > always going out....go to chiro and get them in, but doesn't help more than > a few hours, then it's out again! I also have FMS....having myofascial work > done and pretty good with that. > > I'm wondering if I need to go back to Minocin? Or is it time to go to > serious treatment, (IV's?) see Dr. Sinnot, for example? I'm in ND, so would > need to be somewhat close. > > Any advice, ideas appreciated! > > M. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2010 Report Share Posted December 9, 2010 , One thing I wanted to add to my previous post is that people who have had Lyme for many years frequently test negative, as the body is no longer mounting an antibody response. You could pay out of pocket to have commercial testing, through Igenex lab, or you could get a physician to give you a a course of Flagyl for a few weeks. If you have a major response to Flagyl, that could tell you something... On Thu, Dec 9, 2010 at 11:49 PM, Caren Smood <carensmd397@...> wrote: > , > > The one thought I have for you is that I wonder if it could be Lyme. I had > very severe dermatomyositis, and Minocin or doxy alone (and even IVs) could > not fully overcome it. It helped the disease a lot, and my labs came way > down, but the disease kept migrating and changing and was never fully > eradicated. I finally learned about Lyme and was able to connect all the > dots. I had to add in Flagyl (metronidazole) and do many courses of that, in > addition to staying on Minocin. > > Hope this helps and that you find what you need! > > > > > On Thu, Dec 9, 2010 at 10:25 AM, <eson@...> wrote: > >> >> >> >> Hi group, >> >> In Jan. 2000 I started Minocin 100 mg 5x a week. In 6 months I went into >> remission. Eventually I decreased to 3x a week. >> >> The last few years my labs have shown underlying disease, but no symtpoms. >> Last Dec. I changed to Doxycylcine 100mg because my nailbeds were turning a >> blue color, presumably from Minocin. My thumb nailbeds are still blue, the >> rest are ok. A month later I decided to try 2x a week, since I was doing ok. >> Withing a month I started have redness, swelling, pain recurring in hands, >> wrists, and shoulders. Then to my feet. >> >> I saw a new rhemy in Oct. familiar with protocol. She looked at x-rays I'd >> had done over the previous 15 mo., magnifying them many times on the >> computer, and showed me where I had mild bone erosion in some places. Lab >> work still all negative. She gave me a Kenalog injection, which helped a lot >> over the next few weeks, and increased Doxy to 5x a week. I go back in >> March. If I'm still having trouble then she wants to start me on Plaquenil. >> >> I am having trouble. Fingers, shoulder and feet continue to swell and be >> painful. The spot rotates, but something is always bothering me. Front of my >> rt. shoulder is swollen, like a bursitis. Rt. collar bone and a/c joint are >> always going out....go to chiro and get them in, but doesn't help more than >> a few hours, then it's out again! I also have FMS....having myofascial work >> done and pretty good with that. >> >> I'm wondering if I need to go back to Minocin? Or is it time to go to >> serious treatment, (IV's?) see Dr. Sinnot, for example? I'm in ND, so would >> need to be somewhat close. >> >> Any advice, ideas appreciated! >> >> M. >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2010 Report Share Posted December 10, 2010 Caron, Will the test be accurate while on AP? M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2010 Report Share Posted December 10, 2010 I know that Igenex recommends being off antibiotics for at least 3 weeks, which is why I have never done the testing. However, there is a Lyme physician, Dr. Fein, who has stated that her patients tend to become seropositive, with the regular antibody test, about nine months into treatment with AP. The body tends to begin to mount an adequate immune response at that point that can finally be measured again. However, you've been on AP much longer than that already. It might be worth it to get the Igenex testing materials, go off AP for a few weeks, and do their test. Igenex can test for the actual Lyme spirochete, instead of just your body's reaction to it. Hope this helps. On Fri, Dec 10, 2010 at 3:09 PM, <eson@...> wrote: > > > > Caron, > Will the test be accurate while on AP? > > M. > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.