I have had Lyme disease for 8 years. Thought I was in remission last 18 months, came off Biaxin and Amoxycilin, May 2003. Now I have very bad foot with "hot spot" from bone scan and MRI in metatarsal bones. Orthopedic put me back on Biaxin and Amoxycilin until he can "study out" the best treatment from information I took him. Any suggestions? I know Biaxin crosses the blood/brain barier, but I am not sure what would be best for Lyme bone infection. Blessed with Drs. who will listen to me. Has anyone else had this? Thanks, Sue
Posted by Georgia Sue (Member # 6700) on :
Thanks for your reply. Yes, the foot is very painful. It began with just a little tenderness, which is not unusual for me with all my "normal" aches and pains, fibromyalgia, etc. There really was no sign for several days, then it looked like it might be a bruise working its way out. I am on Coumadin for blood clots, so that too is "normal". It continued to get worse, and after letting it stay down and standing some for about 45 min. I could not support my weight the next morning. Natually, it was Fri. and my DR. was not in office. I kept it up over the weekend, and saw him on Mon. He and I both expected it to be soft tissue inflamation, but when he x-rayed it showed white areas in both bones of my tarsas and metatarsas bones on outside of foot. The bone scan showed a very, very black spot where the tracer dye had accumilated as it does with a problem. The MRI showed swelling and inflamation of surrounding area, but the radiologist could not be more specific about the cause than, stress injury (which I can rule out as with blood clots problem in other leg I am very limited to the time I can be on my feet.), infarction (loss of blood to the area) which I do not believe would cause the pain, infection, or less likely tumor. The orthopedic DR. who is taking care of this thinks it probably is Lyme infection, although I thought I was in remission. He is a Lymie's dream! He said, "If there is any possibility that it is Lyme, I go ahead and treat with antibiotic." Bless him and all like him. He put me back on Biaxin and Amoxycilin which I had been on previously. In 7 days it showed enough improvement that I could put on a loose shoe and put some weight on it. I took him 41 pages I had downloaded off Internet concerning treatment, I am his first chronic neurlogical Lyme patient, he has treated a number of others who responded to his immediate treatment, and he is studying this material to decide on further treatment. I am to go back to him Friday. After 8 years of dealing with this illness, I know the best information is what has been successful with someone else. That is why I posted the question. This is a rather long reply, but I know if I have it maybe someone else might and maybe my experience will help them. I made the mistake my primary care DR. reminds me not to over and over. I assumed it was just one of my usual problems and gave the infection 3 weeks to get going. As all of you know, when you have so many symptoms all the time you get so used to it, you are not aware sometimes when it is something new. This is the third relapse I have let slip up on me. Looks like I would do better. LOL I used to visit here on Lyme Flash frequently, but had not been online with it in some time. Thanks for any help. Sue
Posted by zipzip (Member # 6226) on :
sounds like you are getting EXCELLENT attention.
the biaxin/amoxy protocol is good as it will adress the lyme spirochete in two forms, intracellular and extracellular. its all dependent on dosing.
discuss the use of the drug "plaquenil" (hydro-chloroquine) with your ortho.
it has immunomodulating properties and is often used as an anti-inflammatory in autoimmune patients, specifically rheumatoid arthritis.
given the dangerous effects of cox-2 inhibitors these days this may be a good alternative for you.
plaquenil works synergistically with biaxin to attack the lyme in its intracelluar form (see paper below). but it is a very potent drug, so work up slowly to 400mg per day.
Med Sci Monit. 2003 Nov;9(11):PI136-42. Related Articles, Links
� "Macrolide therapy of chronic Lyme Disease"
Donta ST.
Boston University Medical Center, 650 Albany Street-8th Floor, Boston, MA 02118, U.S.A. [email protected]
BACKGROUND: Macrolide antibiotics are highly active in vitro against B.burgdorferi, but have limited efficacy in the treatment of patients with Lyme Disease. As macrolides are less active at a low pH, their poor clinical activity might be due to localization of borrelia to an acidic endosome, and their activity improved by alkalinization of that compartment with hydroxychloroquine.
MATERIAL/METHODS: 235 patients with a multi-symptom complex typical of chronic Lyme disease, ie fatigue, musculoskeletal pain, and neurocognitive dysfunction and with serologic reactivity against B.burgdorferi were treated with a macrolide antibiotic (eg clarithromycin) and hydroxychloroquine.
RESULTS: Eighty % of patients had self-reported improvement of 50% or more at the end of 3 months. After 2 months of treatment, 20% of patients felt markedly improved (75-100% of normal); after 3 months of treatment, 45% were markedly improved. Improvement frequently did not begin until after several weeks of therapy. There were no differences among the three macrolide antibiotics used. Patients who had been on hydroxychloroquine or macrolide antibiotic alone had experienced little or no improvement. Compared to patients ill for less than 3 years, the onset of improvement was slower, and the failure rate higher in patients who were ill for longer time periods.
CONCLUSIONS: These results support the hypothesis that the Lyme borrelia reside in an acidic endosome and that the use of a lysosomotropic agent augments the clinical activity of macrolide antibiotics in the treatment of patients with chronic Lyme Disease. In contrast, the efficacy of tetracycline in such patients is not affected by hydroxychloroquine.