arrow12 Comments
  1. Karen
    Jun 20 - 6:06 pm

    A very interesting article, Marco — thanks.

    I developed peripheral neuropathy 20+ years after my ME/FM diagnosis. It started after the onset of rheumatoid arthritis, so I assumed a direct link to the RA. But, since my RA was being controlled by a low-dose chemo drug, I had difficulty understanding why I was experiencing nerve pain in my hands and feet. I eventually concluded that the peripheral neuropathy was a delayed symptom of ME/FM. Your article gives me another possible explanation — that the Methotrexate (MTX) responsible for restoring the function of my hands is causing the PN.

    My MTX dose is miniscule compared with that given for cancer treatment. Perhaps an ME/FM patient would require a lower chemo dose to produce neuropathy.

    The “original” article mentions acetyl-l-carnitine as a nutritional supplement that could reverse neuropathy in animals exposed to chemotherapeutic drugs. Perhaps this means me! (Although the article does go on to say this supplement made CIPN worse in a large study of women with breast cancer.)

    Regardless, your article gives me hope that a solution may be found before my nerve pain becomes unbearable.

    • Marco
      Jun 21 - 1:16 am

      Thanks Karen

      I’d no idea that chemo drugs could be used for RA. Its unfortunate that all these treatments seem to involve some sort of trade off.

      Hope for more rapid progress is why I thought this article might be of wider interest. I’ve come across many compounds that might help with peripheral neuropathy either for theoretical reasons, in vitro or in animal models but the real proof needs the various phases of clinical trials in humans and that’s where the big money is needed.

      FMS and ME/CFS research funding in isolation couldn’t hope to cover the cost so being able to piggyback on cancer funding has to be a big plus. It would be even better if it worked both ways and fibro and ME/CFS were seen as ‘pure’ examples of widespread pain/fatigue and could attract funding from other conditions where these are a major problem.

  2. Iquitos
    Jun 21 - 7:59 am

    At the risk of repeating myself, I’ve found medical cannabis to be the best treatment for pain.

    I don’t know exactly what part(s) of cannabis is/are doing this. There are supposedly at least 85 cannabinoids, only one of which is THC. I’m finding the low THC, high CBD varieties the most helpful, as I don’t care to feel like I’m “stoned.”

    So far, after moving to Colorado where both medical and recreational cannabis are now legal, I’ve had to buy mine at a dispensary and it doesn’t sell the varieties I’d prefer — those high in cannabinoids other than THC.

    But I’m growing my own high CBD/low THC varieties and should be able to start using my own plants in another week or so. I tincure the herb like I do other medicinal herbs, using grain alcohol and distilled water, then “cooking” the result down to lessen or eliminate the alcohol and water.

    And Colorado has just dedicated $10 million to researching the medicinal applications of cannabis. I really, really hope that research will attract some ME researchers. (Medical cannabis is already being used in Israel and Spain to treat cancers, epilepsy, Alzheimer’s and several other conditions.)

    First the House, and now the Senate, have bills telling the DEA to stop using money to harrass the users and providers of cannabis in the states where it is legal, which now total 23 states where it is at least legal medicine.

    I encourage anyone who cares to, to sign the petition at asking the Senate to pass that bill.

    • Cort Johnson
      Jun 21 - 2:12 pm

      And Colorado has just dedicated $10 million to researching the medicinal applications of cannabis

      I love it! Thanks for the information on the bills as well. Endocannabanoid receptors apparently litter the surface of the microglia. Who knows how far this field would go if the federal govt would just get out of the way.

    • Betsy
      Jun 21 - 2:45 pm

      Iquitos, what is the percentage of CBD to THC that you’re growing?

      • Iquitos
        Jun 23 - 8:54 am

        One variety, Med GOM 1.0, has 5% THC and 6% CBD. No information on the other cannabinoids.

        Another variety, CBD Kush, has 7% of each. It is claimed that is has the potential to produce up to 15% CBD. Some of the results can depend on growing conditions in addition to the genetics. These two varieties are from feminized seeds that shouldn’t produce any male plants, which “stoners” don’t want since they don’t produce much THC, but I had some male plants from some free seeds sent with my order of medical cannabis seeds and just harvested them before they could start pollinating and tinctured them as usual. I assume they have most if not all the 84 other cannabinoids and would be just as useful to me as those with more THC.

        Another, Skunk #1, claims to have 11% THC and 25% CBD, but I’m not sure I believe it. I haven’t harvested any of these yet so I don’t know if they will be better than the Red Dragon I bought at the dispensary, percentage of components unknown, at least to me.

        In looking at medical cannabis seeds for sale lately, I found some that had even higher percentages of CBD and lower percentages of THC. They are very expensive, like $10-15/seed and one must buy a minimum number of seeds. I may try one of those if what I have isn’t as good as I hope they will be. We can now buy even those seeds named Charlotte’s Web, for a little girl suffering from Dravet’s epilepsy, a potentially fatal seizure disorder, that is now being controlled by CBD made from the variety named after her.

        I have matured and harvested one plant of Med GOM 1.0 and it is curing right now. I’ll make a tincture of it in about a week. I am cloning this mother plant so I won’t have to keep buying seeds. I’m a complete amateur growing this herb, but I’ve been gardening all my life so it doesn’t seem all that hard, other than the fact I have to do it indoors, to comply with the law on having a secure place to do it.

        • Betsy
          Jun 27 - 1:16 pm

          Thanks for your info Iquitos. I wrote earlier but it wouldn’t go through. I got my THC that puts my brain at war from the Stanley Brothers dispensary. They make the Charlottes Web but don’t sell it at their store – you have to apply for it. Guess I will since I went to the trouble and expense of getting a red card. Hope you see this.

  3. Max
    Jun 21 - 11:03 am

    Very interesting piece, thank you. In Germany, a common, low-cost, and effective treatment for neuropathy is intravenous alpha-lipoic acid, which is considered one of the most potent antioxidants known. In the US, Dr Burt Berkson MD has pioneered use of this treatment, at first for liver diseases and neuropathies but increasingly for autoimmune disorders including CFS. For autoimmune cases, I believe he often combines it with low-dose naltrexone with astonishingly good results.

    • Marco
      Jun 21 - 11:28 am

      Thanks Max

      Has Dr Berkson published anything on these treatments?

      • Max
        Jun 21 - 12:40 pm

        Here are some of his journal publications:

        His site gives more detail on conditions he treats. I believe they offer a free phone consult after which he’ll indicate whether he thinks he can help or not.

        He’s the principal investigator and consultant on ALA for the CDC and FDA, so he’s got the medical and research chops!

        He is also profiled in the book “Honest Medicine”, available on Amazon, etc.

  4. Lynne Broad
    Jun 21 - 7:09 pm

    Hi, Marco and Cort, many thanks for this information.

    I just wrote you an extremely detailed reply explaining my reasons for the similarities between this and my condition and now I’ve lost it after going out to get a reference for Dr. Lapp’s Recommended Supplements for Fibromyaglia and ME/CFS By Bruce Campbell, January, 2014.

    Oh well, this report on cancer treatment and small fibre neuropathy is great confirmation for your pre-existing focus on the mitochondria.

    Cheers, Lynne

    • Cort Johnson
      Jun 24 - 4:26 pm

      Sorry you lost it! (Painful when that happens…) hope you can get it back. The mitochondria connection is incredible indeed….

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