Peripheral neuropathy?

Any ideas on dealing with this? An unfortunate possible side effect of an antibiotic my wife was on and now she's experiencing it. We're looking at the following neurological supplements

 

  • Acetyl L Carnetine/Alpha Lipoic Acid (already take)
  • Astaxanthin (?)

 

ideas?

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  • I'd recommend reading "How not to die with True High-Dose Vitamin D Therapy" by Tiago Henriques.  Brazilian Dr. Coimbra uses this to cure MS.  My guess is that it might also be effective with other neurological problems.  My endocrinologist prescribed 50,000 IU/day for me as being vascular protective.  I haven't read the whole book, so this is just a "check it out", not an endorsement.

    The protocol involves a low calcium diet and blood tests for D, parathyroid, and calcium.  The target apparently is to reach the highest D level that doesn't cause problems with calcium or parathyroid.

    Reply Like 1
    • RobH That is the highest dose of Vit D I have EVER heard recommended.  Sure it wasn't 5,000 u?  Several studies suggest that even a single dose of 50,000 monthly is associated with an increase in falls.  (and I am a firm believer in Vit D, just not at such levels) I surely hope you are having your levels checked if this is actually your correct dose.  Vit D acts very differently at physiologic and pharmacologic levels.  You need to be sure you are in the right (high physiologic to slightly supraphysiologic) range.   

      Reply Like
      • RobH
      • RobH
      • 1 mth ago
      • Reported - view

      Louise B Andrew I've been taking 20,000 to 50,000 IU of D3 per day for the past 11 years.  My endocrinologist put me on 50,000, and I'm not sure of the difference between that and 20,000 as a practical matter.  I agree that 50,000 a month is probably bad, and 300,000 a year is really bad.  D needs to be dosed daily, with the same total amount weekly almost as good.  Breast feeding women definitely need at least 8000 IU daily to provide enough for their baby.

      I was amazed that 5000 IU/day has been reported to maintain senior strength better than 2000 IU/day.  Generally, medical politics limits studies to 4000 IU/day.  Anything above that is just anecdotal and case reports.

      At age 74 I seem to be much stronger than my peers.  I swim at least a mile 5 days a week, and perform at about the level of 60-64 year olds.  Except they don't have the endurance that I have.  Most other 70+ guys don't even show up at the pool.  Some because they're already dead.

      This is a new situation for me.  I'm the guy who hopes the finish line will still be open when/if I get there.  I never served in the military because I would be a medical liability.  I certainly haven't gotten stronger with age.  Everybody else seems to have fallen off the cliff.

      The problem with too much D is hypercalcemia.  When I started the 50,000 daily, my calcium level when from low normal to mid normal.  Ho Hum.  Zero supplemental calcium.  K2 (300 mcg Mk-7).

      The problems that created the current fear of D3 were probably D2, misidentification of parathyroid problems, and other incorrect diagnosis.  One recurrent problem is mistaking mcg for mg.  50,000 IU D3 is 1.25 mg, which requires a $700 scale to even measure accurately.  Taking 1000 times as much D3 as intended does cause problems.

      Lack of enough D3 limits the native immune system, leading to colds, flu, infections, weakness, cancer, that would not have happened with adequate D3.  The reason most studies show D isn't effective is that they don't test higher levels.  Proving that 1000 IU/day is worthless does nothing to prove what 50,000 IU/day would do.

      Here's a link to a short video by the doctor who put me on 50,000 IU/day: https://www.youtube.com/watch?v=unRgm28MOo4 His videos mention modest amounts of D3, but he hands out 50,000 prescriptions for just about everyone coming to his clinic. Too late to see him professionally as he has retired.

      Reply Like
    • RobH Thank you for this video. The person who made it is not an MD or DO (or has never been licensed as such, at least in the US), if his correct name is Joe (http://docfinder.docboard.org/docfinder.html).  You correctly note that he is pushing some product in the video that contains 2500 IU daily, which is 1/20th of what you are reportedly taking and that you say he actually recommends or dispensed before retiring.  The study he mentions, the Amsterdam Longitudinal Study, makes correlations between LOW serum levels of Vit D (<20 ng/ml) and functional decline in the elderly.  It does NOT discuss or recommend supplementing with such massive doses of Vit D. 

      The "RDA" of Vit D of course is 600 IU/d. A meta-analysis using IPD meta-regression by the National Academy of Sciences showed that "1044 IU daily was required for 97.5% of participants to be above 20 ng/mL (RDA)."  Personally, I recommend around 5,000/d.  I don't care about medical politics.  You seem to be taking 10x this much, so I do hope you are having your levels checked and that they are not astronomical.  Very glad of course that you are vigorous and healthy, BUT not sure how you or we could prove this has anything to do with your self-megadosing of this vitamin.  But good luck and good continuing health!  

      If you wish to learn more, here's a free article on VitD Toxicity:  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6158375/

      And it's Swiss, so I wouldn't expect too much political influence.  But draw your own conclusions.  

      An excellent source of unbiased information about supplements IMO is Examine.com. It does require a subscription, but my husband and I have found it to be well worth the cost.

      Reply Like 1
      • RobH
      • RobH
      • 1 mth ago
      • 1
      • Reported - view

      Louise B Andrew Ha!  When I visited Dr. Joe Prendergast at his office in Palo Alto he sure seemed like an MD.  Medical complex, degrees on the walls, white lab coat, medical equipment all over.  He wrote prescriptions that were filled.  As an endocrinologist most of his patients were referrals from other doctors.  And the clincher, he was listed as accepting several free meals from drug reps.  Think docfinder missed him.  Since he's retired, maybe they wouldn't include him...

      Earlier in his career he tried to interest drug companies in selling arginine brews that he used to cure his own calcified arteries.  They would have nothing of it, so he ended up getting several supplement companies to sell mixtures that he approved of.  When I saw him, I was already taking bulk powders of arginine and citrulline, which he approved of.  He added berberine.  I was also taking 5000 IU D3 per day, which he increased to 50,000 daily.  He was quite specific that it be D3, not D2, and no extra calcium.  Nothing in my experience of the last 11 years indicates to me that his prescription was anything but beneficial.

      The paper on toxicity seems OK as far as it goes.  But it totally ignores cofactors such as calcium, vitamin K2, zinc, boron, selenium, etc.  Most older research seems to be about D2, and may include supplemental calcium which is toxic with high D.  At least Michael Holick got them to use blood levels instead of supplement quantity.

      The best single source of vitamin D info that I've found is at www.grassrootshealth.org . Their goal is "moving research into practice", which was happening at full glacial speed before they came along. But their goal limits their advocacy to research that has already been done. My personal goal is to practice my best estimate of where the research is pointing, including anecdotal results and opinions of researchers in the field. And with vitamin D, that's a blood level of 100 to 200 ng/ml. Anything less is just asking for vascular disease, sarcopenia, flu, and cancer. YMMV.

      Reply Like 1
    • RobH You're right, docboard missed him (although they DO list retired docs, and the reason they DO is supposedly to reveal disciplinary actions against docs to inquiring patients) .  He surrendered his license in CA in 2015, relating to a patient complaint and evaluation finding him to have "a physical or mental illness limiting his ability to practice medicine effectively and safely".   He would have been nearing or in his 90s, so really can't make much of that actually.  Not that many 90 year olds are not suffering from at least some age related mental and/or physical decline.  

      I took a look at grassrootshealth.  They sell Vit D testing kits, and their levels comport with the limits promoted by medical organizations.  Part of the confusion as you may have pointed out previously is that various labs use differing units for Vit D.  Grassroots states: "48 world-wide vitamin D researchers agree it is 40-60 ng/ml (100-150 nmol/L)"  So everyone should look closely at those limits.  

      An interesting thing I just noticed is that serum levels do not seemingly correspond directly with intracellular levels.  We get Spectracell (https://www.spectracell.com) testing done annually to know exactly how replete we are with various nutrients intracellularly.  When last checked, my intracellular Vit D levels were borderline, while my serum levels were borderline toxic.  Just repeated and will try to learn more if there is still such a discrepancy.  

      A lot of anti-aging and age management docs are moving towards intracellular nutrient testing methodologies.  I have no commercial relationship with this company, but certainly do recommend the testing.  It is not cheap.  But neither is testing for individual nutrients.  I believe Vit D at our local lab was $165 and it is not covered by Medicare.  Spectracell I think is about $400.  

      So, at any rate, just continue to be careful.  Although perhaps the proof is not in, aortic stenosis and other types of metabolic calcification are not great things to have, and they can occur even IF you take no exogenous calcium and even if your blood calcium levels are not high.  For anyone over age 50 or so (when bone growth is well over) with no active bone disease or metastases, Ca levels should be "in the 9s".  Lab "normals" may go up to 10.2 or more, and therefore can be misleading since they simply aggregate all of the levels received in their lab, which would include the entire age spectrum.  

      Reply Like 1
    • RobH Delving deeper into GRH, they publish a chart purporting to reflect a very large study of D3 levels correlated with D3 intake.  Interestingly, not one of their purported study participants admitted beyond a daily intake of more than 10,000 u. 

      Also interestingly, they claim a "Demonstrated level at which toxicity may occur" of 200 ng/ml, which is over 3x higher than is claimed by all other sources I've seen anywhere (over 60 ng/ml or 150 nmol/L; again, always check those units). (It seems to me very possible they got their units wrong.

      This graph is dated 2015, yet they state it is "not yet published".  No way to check since no authors are apparent.  

      Hmmm.  

      At any rate, here is an NIH fact sheet for professionals on Vit D that might be helpful.  https://ods.od.nih.gov/factsheets/VitaminD-HealthProfessional/#h4  

      The prudent upper level cited in this article is 250 nmol/L .  

      So again, my recommendation is to get those levels checked.  

      Reply Like
      • RobH
      • RobH
      • 4 wk ago
      • Reported - view

      Louise B Andrew GSH has my data, as well as about a half dozen other people taking 50000 IU/day.  When I asked one of their researchers about it, the reply was "you guys are all doing fine".  We're off message, and they obviously don't want the distraction

      GSH is well aware of ng/ml vs nmol/L.  

      Reply Like
      • RobH
      • RobH
      • 4 wk ago
      • Reported - view

      Louise B Andrew Wow!  I read Dr. Prendergast as maybe 5 years younger than me.  Now you tell me he's 15 years older.  Considering that he had severe vascular calcium at age 37, it appears that whatever he did gave him at least a 50 year extension on his life.

      I would expect tissue D to lag blood D by about 2 months.  And tissue is where the action is.  As of 10 years ago, lab values for the same blood sample varied substantially.  A Quest reading could show high, while a LabCorp reading was low.  Add saliva and blood spot to the mix and you're just going to be confused.  Maybe they've gotten closer since then.

      I regard the 40-60 ng/ml recommendation as a consensus of mediocre studies.  Certainly in the right direction from current practice, but not an ultimate recommendation.  

      Reply Like
    • RobH GSH?  

      Well, if GRH didn't get their units wrong, then it's too bad they didn't list their source for this "demonstrated" level at which toxicity may occur.  It's also a shame that they haven't published all of this data that they claim to have.  Including, possibly yours (if you meant GRH).  Perhaps you should ask the researcher you mention when and where they plan to publish their data where it can be peer reviewed.  

      At any rate, wish you well; and keep us posted.  

      Reply Like
      • RobH
      • RobH
      • 4 wk ago
      • 1
      • Reported - view

      Louise B Andrew Missing from that chart about toxicity is any mention of parathyroid or calcium levels.  Parathyroid suppression is perhaps a better measure of the tolerable vitamin D level.  Exceeding that tolerable level is probably what drives calcium to excess, which is where the real damage lies.

      GSH has done a fantastic job, working on a shoestring and crowd sourced funding.  The blood testing was introduced because many doctors refused to order the test.  Offering the test made the research possible.  

      If you're interested in experience with higher levels of D, the Coimbra protocol described in the book I mentioned above should be an excellent overview.  Or if you read Portuguese maybe you can find the original reports in the Brazilian medical literature.

      Guidance papers designed for general use are not rules that specialists such as endocrinologists are bound to follow.  Or even some off the wall life extensionists...

      Reply Like 1
  • Ashwagandha (KSM-66)

    Inositol (Myo-Inositol)

    B12 (Methylcobalamin)

    L-Glycine 

    A potent Omega-3 complex won’t hurt either. 

     

    The Inositol and Glycine are must-haves.

    Reply Like 1
  • Was it a fluoroquinolone (Cipro or Levaquin)? If so, mitochondrial support with CoQ10, Acyl-L-Carnitine, NAD+ or NR, Hydrogen water, and photobiomodulation with red light if possible. Also B6  & B12 deficiency can cause neuropathy, and Alpha-Lipoic acid helps with certain types of neuropathy.

    Reply Like
    • Katherine Birchenough Interestingly, B6 toxicity is a research model for (and does cause clinical) neuropathy.  It is about the only substance I know of that can cause a similar condition when levels are either excessive, or deficient.  The peripheral neuropathy of B6 excess is pure sensory neuropathy.  Since B6 is plentiful in foods and the body needs only about 2 mg daily, there seems to be no particular reason for supplementing and risking excess; and yet, if you look at most multivits and a bunch of other supplements, many of them contain very large amounts of this vitamin.  

      Please say more about photomodulation with red light.  Is this IR?  Near or Far?  or?

      Thanks.  

      Reply Like
    • Louise B Andrew it is both visible and near infra-red that targets the cytochrome-c-oxidase enzyme in the mitochondria. See joovv.com for more information. Not affiliated with them, just a big fan of their devices.

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  • I can recommend to google "Periferal Neurpathy" and then make an informed choice if that is something for you try.

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    • Staffan Olsson I forgot the most important word. Google " Periferal neuropathy and benafotiamine". 

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  • It depends ENTIRELY on the type and ACTUAL cause of neuropathy.  What antibiotic is this being attributed to?  The only ones I coul think of immediately are antituberculars.  But no, here are some others---none used any too frequently.  Depending on the antibiotic, you might be able to find the putative MECHANISM of its causing the neuropathy somewhere, and go from there. 

    Has she had a nerve biopsy, or is this speculative?  

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  • Louise B Andrew it wasn't speculative, the symptoms were very real, but it didn't get to a biopsy. Good news is they have faded and are now gone. We are attributing it to an allergic reaction to a drug. 

    I can check the name but it's one related to Fluoroquinolones, which have a number of case studies and articles written on them and neuropathy. 

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  • Hi Dan,

    I didn't mean to sound pejorative.  What I meant was, was this diagnosis essentially a guess by a provider, or was it proven pathologically?  I would always assume (well, almost always) that symptoms are real.  At any rate, good that it's gone.  It wouldn't have had to be an allergy, a side effect could do the same thing without any allergy per se. 

    Fluoroquinolones, while occasionally necessary (I had to take them once, was a worrisome week) have MANY awful potential effects.  Best avoided unless they are absolutely necessary IMO.  

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