To ‘B’ or Not to ‘B’?

To ‘B’ or Not to ‘B’?

That is the question. Vitamin B, that is. And any other nutritional supplement.

Shortly after ALS crashed my party, I was introduced to the book “Eric Is Winning,” by Eric Edney. Edney was a long-term ALS survivor (over 20 years) who attributed his longevity to a regimen that included, among other factors, nutritional supplements. The book offers Edney’s assertion that his protocol prevented further decline and may have even reversed some of his ALS symptoms.

That got my attention. Motivated in equal parts by hope, cynicism, desperation, and finite financial means, I launched a research campaign. My conclusion was that, minimally, some baseline gain might be achieved by a supplement “cocktail.” And if a fraction of the constituents could somehow circumvent the blood-brain barrier, ALS modulation might even be possible.

Beginning with Edney’s list, augmented by doctor recommendations, patient experiences, and my own due diligence, the candidates for my elixir emerged. My criteria for selection became:

  • Scientifically proven, or theoretically postulated, mitigator against the suspected causes of ALS
  • Symptom-relief potential
  • Side effect tolerance
  • Budget-friendly

For example, coenzyme Q10 (CoQ10) is a mitochondrial cofactor known for its antioxidant properties. Oxidative stress and mitochondrial dysfunction have been implicated in the pathophysiology of ALS. CoQ10 also promotes energy and overall vitality and helps normalize circulation. Side effects from CoQ10 are rare and mild. It is relatively inexpensive. Thus, CoQ10 has been the one constant component in my changing supplement mix.

Within that framework, I have at various times and at varying dosages included the following in my daily potion: garlic, vitamins B-complex/C/D/E, coconut oil, acetyl-L-carnitine, 5-hydroxytryptophan, DHEA, N-acetylcysteine, Bacopa, methylsulfonylmethane, luteolin, proanthocyanidins, ginseng, astragalus, arginine, glucosamine, chondroitin, biotin, Ginkgo biloba, taurine, omega-3, deer antler velvet, copper, zinc, alpha lipoic acid, selenium, glutathione, Protandim, astaxanthin, resveratrol, creatine, hemp oil, and magnesium.

Once selected, I commit to the supplement for a minimum of three months. I make mental note of any change, however slight, in my abilities and function. I strive to pay about $100 per month, and never over $200. I maintain an ongoing surveillance for new prospects. As I add promising components, others, fall off out of economic necessity. Discontinuance may only be temporary. Glutathione is now available as an intra-oral spray, offering much more effective absorption into the bloodstream. Consequently, I am once again taking it.

Recently, I added three new supplements to my daily intake. Here is the rationale:

  1. Per ALS News Today, reduced levels of nicotinamide phosphoribosyltransferase (NAMPT) led to motor dysfunction and impaired neuromuscular junction synaptic transmission in mice. In ALS patients, levels of NAMPT are significantly lower, possibly suggesting a link between ALS and NAMPT. A naturally occurring enzyme, nicotinamide mononucleotide (NMN), regulates NAMPT activity. In NAMPT-deficient mice, it served as a substitute for NAMPT, reducing the loss of movement and increasing lifespan. I have added a daily 250-mg dose of NMN to my mix.
  2. Per The ALSUntangled Group, at least four of curcumin’s purported therapeutic advantages might be useful in treating ALS: modulating neuroinflammation, lessening oxidative stress, reducing protein aggregation, and altering the fecal microbiome, as well as promoting neuron survival, growth, and differentiation. ALSUntangled independently validated the diagnoses and substantial and sustained functional improvement of three people with ALS who were on cocktails of treatments that included curcumin at some point. I am now taking 600 mg daily of Theracurmin (water-soluble nanoparticles to maximize bioavailability).
  3. Within the PatientsLikeMe online community, nine members with ALS reported taking cannabidiol (CBD) oil in a variety of doses. Three reported “major” benefit and two claimed “moderate” ones. Benefits cited included improved speech, swallowing, secretions, fasciculations, appetite, sleep, and mood. According to ALSUntangled, “Cannabinoids and manipulation of the endocannabinoid system may well have disease-modifying potential in ALS.” Through my primary care physician, I aim daily to take 20 mg of CBD oil sublingually.

The reality, of course, is that all of the effort and expense likely will bear no fruit. The odds are astronomically stacked against me. Even if any of the supplements were to have any hint of efficacy against ALS, the unanswerable questions of dose, frequency, and synergistic effect within the cocktail remain. That, and the aforementioned blood-brain barrier lottery-like challenge, lead many to describe what I am attempting as impossible. That said, a shot in the dark is better than no shot at all. And I still have some bullets left.

A childhood memory futher buoys me. When I was a boy, perhaps as an influence of having lived during the Great Depression, my father was zealous in following a “waste not, want not” mentality. So much so, that he would periodically combine all of the soon-to-be-expiring meat, cheese, and produce into a single, visually and aromatically unappealing, potpourri. To encourage its rapid consumption, he dubbed the resulting product a “yum yum casserole.” Once, out of dozens of attempts, it actually lived up to its name.

With my ever-evolving supplement concoction du jour, I am seeking to strike ALS-impacting “yum yum.”

***

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.

25 comments

  1. Charlie says:

    So, Rick. Has there been any efficacy ?
    If something works it’s going to be the devil’s own job to identify it amongst all the other stuff.
    (Deer antler velvet? Seriously? Or did you put that in just to see if we were concentrating?)

    • Rick Jobus says:

      Charlie, given my gatling gun approach, it’s impossible to isolate a single element. Suffice it to say, if I had stumbled upon a particularly efficacious cocktail I’d stop tweaking. The deer antler was the recommendation of acupuncturist. Desperate times….

      • Charlie says:

        “The deer antler was the recommendation of acupuncturist.”
        Well, that will teach him a lesson about not running away from a charging deer.

    • jethro says:

      Main problem is that after intake of all these supplements – you dont know which is good for you. To find out, it will take a while. Time is a thing that ALS doesnt recognize.

  2. Lorna Sedor says:

    Hi Rick-
    There are so many places to purchase supplements-hard to know amongst all the vendors, what is good quality- so can you suggest where to get the NMN/NAMPT? Thanks.

  3. Patricia Riascos says:

    My 2 cents…
    It seems like I have had ALS for a long time, maybe since 2011, yet I was only diagnosed last year, (after an unnecessary fusion of the spine) 🙁
    The doctor has told me that I am an “aberration” because apparently I should be much worse by now. So far my arms are very strong, voice and swallowing still intact) crossing my fingers because I know that will be arriving eventually.
    I have been taking a moderate amount of High quality supplements for more than 30 years now, lots of antioxidants. CoQ10, alpha lipoic acid, Omega 3, Actyl carnitine off and on) curcumin (off and on) multivitamins with a high dose of Vits. 12and now taking also tea supplement. Not sure what is working but all together is not an oveweolming amount. If that is the reason for my slow advancement then great. It is something that I definitely think that Drs. should look into.

    • Charlie says:

      This interesting post shows one of the major dilemmas of ALS and the things people do to try and slow it or stop its progression.
      Does taking your favourite cocktail of supplements really slow things down; or is the perceived slowing really the disease’s actual progression rate for you (which appears different for every pALS) ?

      • Rick Jobus says:

        Great point Charlie. I wish that the urgency of my mixology didn’t preclude adequate time research a possible answer.

  4. Charlie says:

    There is very little research into naturals/supplements because Big Pharma prefers a multi-molecule drug which they can sell for homogeneously huge amounts of money (vide Radicava).
    Big Pharma would be horrified if any incurable disease was then found to be cured by a cheap and readily available tablet sold in the health-food store.
    ‘Odd ball’ doctors like Bedlack area rarity in studying Lunasin. No Pharma will pay for a scientific study of something like Turmeric. Spice manufacturers might …

  5. Charlie says:

    Re: ‘Eric is Winning’
    Eric was misdiagnosed.
    His neurologist wouldn’t be the first sawbones to call something ALS when it’s really something else.

  6. Charlie says:

    ALS disrupts the nervous system with horrifying results.
    Chemical weapon nerve agents disrupt the victims’ nervous system with horrifying results, and usually instant death.
    The basic molecules of nerve agents are organo-phosphates.
    Widely used agricultural fertilizers are variations of phosphates.
    Agricultural land run-offs into the water system contain phosphates.
    Many foods are found to contain phosphate residues, which are ‘claimed’ by governments to be at harmless levels.
    Many of us are able to fight off or synthesise these toxins. Many can’t do so.
    Some people get ALS.
    No ALS research (dares to) attempt investigation of phosphates on the human body.
    Can you imagine the uproar if these fertilisers were found to be poisonous to us?
    Can you imagine the fight-back if statins were found to be poisoning us?
    No ALS research attempts to find the cause of ALS.
    All ALS research attempts to find a ‘slowing’ treatment.

  7. AndyS says:

    Rick: You say that you are taking 600mg/day of Theracurmin, but from prices I’ve seen ($68 for 120 count 60mg capsules) that alone would cost almost $200/month. ALS Untangled report suggests 180mg/day (90mg twice a day). Why are you taking so high a dose? Are you getting it cheaper than this, and if so, where?

  8. JFK-1972 says:

    I take Bio-Turmeric etc from amazon. It´s cheaper and i hope the brand is not important, but the curcumin content.

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