First, I was diagnosed with neuropathy in spring 2023, but based on symptoms I probably was developing it as early as 2019. Second, I, fortunately, don't have any constant pain, so I stayed way from the gabapentin from the start. Third, if you haven't been tested for Lyme disease do so now, no matter where you live. My neurologist did not even consider Lyme disease as a possible cause. I live in a rural area, constantly outside, removing ticks, loose and attached, on a regular basis. After my diagnosis as I started to research a disease of which I knew nothing, I found that Lyme disease is listed as a potential cause. I asked my PCP to order the test, she was willing, and the results were positive. Be aware that the tests are now being recognized by some researchers as being notoriously inaccurate. Since I was not positive for the "traditional" causes of neuropathy I made the assumption that Lyme disease was a possible cause and thus started treatment for Lyme. I went through the convention treatment, 4 weeks of doxy No noticeable change after 4 weeks. I continued my research, the government NCBI web site being a good place to start (I'm not allowed to post the url for it). Thus, 6 months after my initial doxy my PCP was willing to try another 4 weeks. Again, no result. I have since read numerous pubmed type articles that indicate doxy is only good very early in the disease and I was long past that. Meanwhile my neuropathy was bearable--numbness, tingling, stiff feet and ankles, balance issues, severe cramps in my legs at night (really the only painful times, and the cramps did pass somewhat quickly), and a developing tremor in my right hand. My searches led me to a research paper that suggested long term treatment with tetracycline was better than doxy. I shared that paper with my PCP; she wasn't willing to go for the 11 months that was the max length in the paper, but did go for 4 months. I started that in May, 2024, and with my PCP's consent I pulsed the doses, taking the med for 5 days then stopping for 3 days. I was very respectful of the before and after meal spacing of the doses, skipping a meal if it conflicted with the med, and I tried to space the doses as much as possible every 8 hours. Note that this info would only be of use if there is the possibility that you have Lyme. By the time that I finished the meds in Nov. the leg cramps were long gone, and the tremor in my right hand was barely noticeable. The meds? Who knows, because I was also trying to deal with the neuropathy directly. Researching the cramping, before my diagnosis, led me to info about somatic movements. You would have to look it up but I guess it is sort of a cross between physical therapy and yoga. No practitioners near me, but I found an online source. I read the info, the price seemed decent, and I signed up for a basic course. That was in Dec. 2022. I liked the results and signed up for the 2nd level course, and have been doing a varying set of the movements daily since then. I find that the movements help keep me limber, and that seems to help with the balance issues. There are many articles on the site, some of which deal with neurogenesis. If I have damaged nerves then it stands to reason that I need to repair the nerves or maybe grow new nerves. That opened a flood gate as I started tracking down research papers dealing with neurogenesis. More than 15 years ago research suggested that forced exercise can help with Parkinson's disease. Research after that has suggested that forced exercise could possibly help with other neurological diseases. I was a long time bicyclist and hiker but between a bad hip (replaced last year) and legs that often didn't want to support me, I depended on an elliptical exerciser for much of my active exercise. Since reading about forced exercise I have stepped up my efforts on the elliptical. It is too soon to tell if that has made a difference, although I do seem to feel better when done. As soon as the weather gets better I will get out on a bicycle. I think I can force the pace, and that seems to be what is needed, more on a bike than I can on a machine. Finally, whenever a research paper, and note that they are all dealing with animal subjects, indicated that some compound other than a drug might help with neurogenesis I added it to my list of daily supplements. Thus, over the last maybe 6 months I have started to take choline, lithium orotate, vitamins B3, B5, B12, zinc, and selenium in addition to my usual vitamins and the herbs that I continue to take for Lyme. It is too soon to know if any one of them has made a difference. but as a researcher noted in one of the papers, it might be time to recognize that there is no one size fits all when it comes to neuropathy because it can express itself in so many ways, and each person responds to it as an individual.
Very Helpful
Thanks ❤️