Does anyone treat their neuropathy without big pharma drugs?

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.

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Thanks ❤️

I remember having the bullseye indicator on my upper arm many years ago. My Dr. said that nothing can be done after many years to test for Lyme's decease.
I suffer with severe sciatica, arthritis, and neuropathy which limit my quality of life and movement.
Your article helps to shed light on what many of us are experiencing.

I take Pure encapsulations Alpha Lipoic Acid, 600 mg 3 times a day. It has helped tremendously over the years but it is expensive but worked better than cheaper brands. When the burning came back a few months ago, someone on this site pointed out that large amounts of B6 could make neuropathy worse. Right before the new burning began, I had changed one-a-day vitamin and the new one had tremendous amounts of B6. My doctor tested me for B6 and it was way above normal. I switched back to my original one-a-day vitamin and burning has gone away. I also take NAD.

Good luck,

For harpur, and actually anyone who has reason to think Lyme might be a possibility, testing can be done at any time. Once positive the test remains positive. The downside of that is that the test can't distinguish between a current ongoing infection or an older infection. And that's assuming that the test actually works, and I'm reading more articles that have cast serious doubts about the tests. I can't post links, too new on the site I gather, so I'll go about this a different way. Note that any article that I refer to can be found on the NCBI (National Center for Biological Information) site. So for an interesting read about the results of a study on people who supposedly didn't have Lyme and did not live in a Lyme endemic area, search for "Isolation of live Borrelia burgdorferi sensu lato spirochaetes from patients with undefined disorders" My tetracycline therapy was based on this study, "Tetracycline Therapy for Chronic Lyme Disease" It is more than 20 years old and I haven't found any study more recent. FWIW, prior to my tetracycline I had been up going to the bathroom several times each night, age I figured, or the water was drinking trying to prevent cramps. Then after my hip surgery and getting up at night was a concern I got a bedside urinal bottle, which got used many times during the night. But I was surprised in the morning to see how small was the volume of urine I passed during the night. Drinking lots of water was not the cause. I decided that I would talk to my PCP about this at my next appt. At this point I was almost half way through my tetracycline and soon I noticed that I was getting up less often. By the time I finished my med I was not getting up at all in the night. That was mid-Nov 2024. Since then it has been a rare night that I need to get up to urinate during the night. Subsequent searches found a few articles suggesting that borrelia, the Lyme bacterium, often would colonize the bladder. Because it is very fastidious in its growth requirements it would never show up on a routine urine culture. All this made me think that the tetracycline was doing something. Next, two articles that have given me the idea of implementing forced exercise into my treatment of neuropathy, "It Is Not About the Bike, It Is About the Pedaling" and "The Role of Physical Exercise and Rehabilitative Implications in the Process of Nerve Repair in Peripheral Neuropathies" Finally, in a potential joint attack on Lyme and neuropathy, "Evaluation of Natural and Botanical Medicines for Activity Against Growing and Non-growing Forms of B. burgdorferi" I found this link in a book I just got, "Lyme With a Twist" by Lowell Miller (inexpensive and readily found on Amazon). It is simply a story about his 40+ years dealing with Lyme, neuropathy, the American medical system, and alternative therapies. An interesting read, generally info I already knew. The gem for me was the link to the study about botanical medicines. He had Lyme for many years before he eventually was able to get conventional treatment, with the usual lack of results for someone treated long after the infection was acquired. His neuropathy was very severe, including Bell's palsy. He tried the "drug" that had the best results, a herb, Cryptolepis sanguinolenta, with wonderful results. I was impressed enough that I ordered a large bottle of the tincture and started taking it yesterday, 2/17.

Look up Journavx for pain relief

Hi Anna
I’m sorry to hear about your neuropathy. Mine is post-surgical from nearly 3 years ago. I started on Gabapentin, up to a very high dose. I wasn’t sure it was helping (and was cautioned about some aspects of it) so I weaned off and didn’t notice a difference. I’m now on Duloxetine 60 mg delayed release capsules 2x/day. I take in the morning and afternoon and if I take it late, I notice more discomfort, so I think they help. They have multiple benefits for me as I also have neurocardiogenic syncope (feel lightheaded/pre-faint) if I’m not really well hydrated or I’m standing too long, for example (blood pools in my legs/doesn’t get to my brain). This med also helps block the signal to my brain that makes me feel lightheaded.

Edit: Apologies/ I initially thought you asked about big pharma drugs but realize now you said without drugs. My story under our journey with neuropathy covers several other things I’ve found (non pharma)

Best wishes to you!

I've been going through my notes to find the reasoning for taking the various supplements that I use. This was the article that got me started on acetyl-l-carnitine (ALC), "Acetyl-L-Carnitine in the Treatment of Peripheral Neuropathic Pain: A Systematic Review and Meta-Analysis of Randomized Controlled Trials." The article came out early 2015, and stated that "In conclusion, the current evidence suggests that ALC seems effective and safe in the treatment of PNP, especially of diabetic PNP. Oral administration of ALC may be recommended due to its similar efficacy but easier administration. However, further trials with larger and various population and longer follow-up are needed." I have not found any follow up studies. However, as I mentioned in an earlier comment I really haven't had any pain, other than that from severe cramping in my legs, which has ended for whatever reason. But ALC was one of the first supplements I started after my diagnosis. It is very difficult, actually probably quite impossible, to attribute an effect to any one cause. Did I not have pain because I started taking ALC? Who knows. Thinking back now, one of the reasons my PCP referred me to a neurologist was because of pain in my shins, something I had attributed to shin splints. The pain was not severe but it was definitely noticeable. The supplement is inexpensive, as supplements go, I pay $45 for 120 500 mg capsules. Currently I take one each day. Unfortunately it was not until I realized or accepted that neuropathy and I were going to travel together for a long time, my early notes are not very useful. I do know that until a month or two ago I was taking 2 capsules per day, so that is at least 18 months on that dosing.