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.
I have so many symptoms of Lymes but for the last year have been thinking I could have MS or something else. I have posted on other forums here and am still not sure where to turn. I kept asking about Lymes but neuro kept saying no. After persisting he finally sent me for a test but said it was negative. Recently I got a copy of ALL my records and see that I had only 2 positive bands which were P41 and P66. If these do not mean I have lymes could they mean I have something else? Also, my livedo reticularis has already and gotten tons worse. Could this have anything to do with Lymes?
Welcome to our site -- sorry to hear what you've been going through.
Most neurologists are as a matter of policy not inclined to suspect or recognize Lyme and other diseases that often come from the same ticks. There are historical reasons for that ignorance, but there is no excuse for it now. Rheumatologists have the same problems thinking more broadly, and too often so do infectious disease (ID) MDs.
The commonly used tests, including the one you probably had, are not very accurate, but MDs who don't believe Lyme is serious or widespread often rely on those not-very-accurate tests instead of reading them in context with the patient's symptoms. It is a great sadness to me that MDs would rather tell patients they have MS than open their own tiny little minds to other medically supported possibilities.
The two positive bands you have (41 and 66) are not specific to the Lyme bacteria, as I read the medical literature, but the tests are not very accurate and should be read in context with your symptoms. Neuros are not prone to doing that, so if you want to explore the possibility of Lyme, I (as a Lyme patient, not medically trained) would suggest you find a so-called LLMD [Lyme-literate medical doctor] to evaluate your situation. (I just googled 'livedo reticularis lyme' and got a number of hits that indicate a possible association with Lyme, so it's worth checking out, I would think.)
If I were in your situation, I would find an LLMD for an evaluation. I just found a new website called It's About Lyme, which along the right side of the page has a list of other organizations with referral functions to LLMDs. We don't post LLMD names here in public, because the MDs are sometimes harrassed by their local medical boards for going off the beaten path and actually treating their ill patients.
Let us know if we can help further, and also how you do. Best wishes!
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