Band 41 frustrated! Need some guidance

Hi Everyone. Could desperately use some advice. In my 20s I got very ill from some mysterious illness which I believed to be lymes. After,6 months of the typical lymesv symptomsb and despite Bing told Iv was negative for lymes, i took a month course of antibiotics and within the first well it cleared up by 80 percent and since then I fully recovered asidE wIth some odd but totally manageable symptoms. 16 years later i came siren with neuropathy, fatigue and migratory joint and muscle pain as well as some very stressful autinimic nervous system issues. I had been tested and retested for everything and so far they don't have a clue. The infectious disease doctor said emphatically that lyme and chronic lyme never manifest in neuropathy and then toss me tests were all negative and I could completely rule it out. Today I received the results in the mail and he was right according to the cdc. However I did have reactivity to band 41 on both igg and igm and one of two tests had 58. I had two questions for the group here. (1) in absEnce of being a new infection since i love in manhattan and spend most time indoors, could lyme stray dormant for that many years and resurface?. (2) is the band 41 a relevanT finding? I read somewhere that many of even must ppl that were to take this test would show that as reactive since it is non specific. However, i also read that itis more on specific flagrant bacteria and those seemed to be pretty finite and unrealistic (gun disease, syphillis etx). I am really struggling to figure out which way i should go wIth my treatment and diagnostic path. Next up is a spinal tap. Any thoughts here would be appreciaTed!

If you are interested in finding a LLMD (Lyme Literate MD) - you could start a new thread titled: "Looking for LLMD in/near_________" and insert your city/town and State.

then enable your email option so members can send you names of LLMD's - we can't post the names on the forum- for privacy reasons.

Good luck!

Keep reading, posting, as there is a lot of support and knowledge on this forum...we can help you through this....

41 is the tail or flagella band...could be Borrelia or could be a different bacteria. 58 is a heat shock protein...

Thanks Lyme Pickle. My symptoms are neurological and muscular (migratory pains in joint, tissues and muscles) along with peripheral neuropathy (recently confirmed through punch biopsy) and dizziness and fatigue. Neuros don't see any gross motor involvement and MR's and other bloodwork has been very clean. I tried doxy for 10 days and felt no real effect except for a lot of stomach issues so I stopped. Don't know what path to go down now and with such non-specific blood results I worry doing something like iv abx could in fact make things worse.
How did you confirm your diagnosis and what treatment did you undergo? How did you know for example it was not an autoimmune reaction to prior tick borne infections etc?

What is a blood smear?

Thx. That almost sounds too easy. I probably need to get to an LLMD fast. My infectious disease doc (who has clinical expertise in LD) said there is no way I have lyme disease. Was pretty emphatic. Symptoms however fit chronic lyme and I have no positive findings in any bloodwork or diagnostics aside from neuropathy however to not assume that is not a possibility.

Yes, go to a LLMD - skip the ID Dr's.

Hey Mysteriousme,

I am sending you an email now with some NYC LLMDs. None of us can say you have lyme, of course, but I will tell you that I had or have all your symptoms. Tons of us on here have neuropathy--if your ID doc rules it out as a symptom then I would definitely say he's not the doc for you.

I did get negative results from many labs before my CDC-positive results from Stonybrook, so i agree that they are the best lab that is covered by insurance. I also encourage you to spend the $200 at Igenex--they are very kind and, at least for me, more accurate. I didn't get a for-profit vibe at all from them. They are doing their job of helping vast numbers of us who couldn't get an answer anywhere else. Also, an LLMD can diagnose you without any positive test results.

I also live in Manhattan and moving here is when my symptoms became their worst ever. I personally believe it's the stressful environment, cold weather, lack of sun by being inside so much, and even the actual northern latitude that made my symptoms flare after so many years of being manageable in a warmer southern climate.

Good luck, and please keep posting here!

Yes, Girlie, I feel the same way! When I was first sick I went home during winter: symptoms were a little lessened. It was rainy and cold on Maui, and I was still tired & sickly but not debilitated.

Went back to Maui in March, felt much much better after some killer headaches finally subsided.

Went back in June for a very short trip, and the MOMENT the plane doors opened all symptoms went away! They stayed away for 3.5 days. But they came slamming back the very moment I got back to NYC. I was sick in the car on the way home. This really made me think about the latitude issue.

I'm so ready to move back to Hawai'i or Houston--anything further south and warmer in general!