This forum is for questions and support regarding What Causes Lyme Disease, Diagnosing Lyme Disease, Joint Pain issues, Living with Lyme Disease, Nervous System issues, Prevention, Risk Factors, Skin Disorders, Symptoms and Treatments.
Tested positive for LYMES and MRI shows a small tear in miniscus. Should therapy be done while there is still effusion in the knee. Also the left knee is acting up as well. The right knee was very warm and very swollen. 3 doctors and no treatment except for doxicyline for 3 weeks back in Sept. The infectious disease doctor said I have big knee joints and the Lymes doctor verified that I have Lymes with no further treatment than being tested for it in 4 months.
Knee specialist gave me an x-ray and said I have arthritis and talked about injections in the knee. I suggested an MRI and the miniscus tear showed up. Next visit nothing was said about the arthritis. Just go to rehab and wear the special knee brace. Do I do the therapy and look for a doctor to help me reduce the LYMES antibodies through antibiotics?
I'm not medically trained, so I can't speak to the physical therapy aspect, but your inclination to find a different Lyme specialist for a second opinion is what I personally would do.
You may already be aware that so-called 'standard' therapy for Lyme is a few weeks (at most) of antibiotics, and that the standard explanation for continued symptoms after that treatment is 'an autoimmune reaction' to the Lyme bacteria that are no longer there. So it sounds like you may have gotten standard treatment.
I have not read anywhere about what physical therapy treatment/brace is recommended for Lyme knee -- just don't know. It's not a problem I have had much trouble with, but perhaps others here can speak to it.
It sounds like you have seen several different specialists: an ID doc, a Lyme doc, and an orthopedist/rheumatologist --? ID docs and rheumatologists are often very strong in their belief that a Lyme patient is fine after a few weeks of antibiotics. Some of them understand that Lyme is not that simple to get rid of, and it depends more on the individual doc than on what specialty they are in ... but generally speaking, ID docs and rheumies have drunk the koolaid and are firm in their 'hard to get, easy to get rid of' approach to Lyme.
Were you tested for any co-infections, which are diseases carried by the Lyme ticks in addition to Lyme? I have read various estimates, but I've read that ~50% of Lyme patients have one or more co-infections. These diseases are tested for separately from Lyme and often treated with different antibiotics than Lyme. You may not have any co-infections, but it's a question I would ask and expect a reasoned answer (that is, something more detailed than 'No, you don't have anything else.')
The knee thing is different in everyone with that symptom, so hard to say. Remember, I'm not medically trained, but in your situation I personally would find a (new) LLMD [Lyme specialist] to look at the infection aspect, and keep up with physical therapy for the knee. Further treatment for Lyme (with antibiotics) may resolve at least part of your knee problems, tho not the meniscus tear, of course. Most important is getting a full and accurate diagnosis (and then treatment if indicated) for Lyme, imo.
So yes, I think your suggested approach is what I would do in your situation.
Best wishes -- let us know what you do and how it goes -- your experience could help someone else here.
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