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.

29 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.

    • Angeline Pacy says:

      My brother died of ALS but before he did, we used to giggle together over the deer antler. After trying a few supplements, his comment on the red velvet dear antler was that ‘it was his favorite’ (careful of knock-offs that use other parts of the antler to cut prices). It stimulates growth hormone (among other things) and you can find studies on that in pubmed.gov. I am sure that it alone cant keep someone alive but that doesn’t mean that it cant help symptoms.

  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.

    • Angeline Pacy says:

      The link between statins and ALS is multi-factorial in nature:

      1.) First, there is a strong genetic link. SNPs are common genetic variations. Amongst these common genetic variations seen throughout the population are variations in drug metabolism. The p450 variations determine how we metabolize drugs, determines many drug side-effects and disease presentations:(https://www.ncbi.nlm.nih.gov/pubmed/25792441).

      2.) There is a direct link between statins and CoQ10 levels. As a mitochondrial nutrient, CoQ10 is needed for healthy mitochondrial functioning. Mitochondrial functioning is directly linked to ALS (either as primary or secondary mitochondrial disease / mitochondrial dysfunction). CoQ10 has an affinity for the heart in particular, and less so for other systems (but still is important for the brain and nerves in other ways). As CoQ10 levels drop, patients near death. There is a relationship there that needs some better definition in the ALS community since they only studied CoQ10 and not the reduced ubiquinol form. None-the-less, the relationship to mitochondrial health is there. Therefore, this statin-impaired pathway likely contributes to ALS dysfunction in some capacity.

      3.) Not every drug side-effect comes from the p450 gene variations (SNPs). I have someone close in my life who is carrying an SOD2 gene mutation associated with mitochondrial disease and with ALS (and MTHFR A1298C, amongst other recessive genetic issues). He developed ALS-like symptoms (and later Parkinson’s-like symptoms) after years of disseminated bartonella, plus multiple additional infections such as mycoplasma and borreliosis. He is a perfect example of someone who developed extreme cramping and fasciculations with a generic statin. He could see his muscles jumping while in church and had to excuse himself. Those extreme symptoms resolved when he was removed from the new statin drug. However, he still has a plethora of neurological symptoms. In this case, the statin represents the lock-and-key model perfectly. This is a complex case in which the patient has environmentally-induced neurological symptoms, genetic predispositions plus drug side-effects. This is real life. ALS is messy. But, it can be tweezed out and stressors (environmental complications) and genetic issues can be addressed with a good cocktail (unique to the genome).

      Moving back to drug therapy…without genetic testing, physicians are prescribing medicine in a partly blind-folded way. Do I feel lucky? Knowing one’s genome can be empowering (and strangely not prescribed, despite its potential).

      ALS and genetic testing should go hand-in-hand but it really doesn’t. While environmental factors are sjust as strong in this population, they interact with genes (impaired detox, metabolism, methylation and more).

      While insurance claims to cover genetic testing and counseling services, I have never seen such ignorance or resistance as I have in the teaching hospital systems (even in Boston)…then, failure to even recognize the testing by FDA-approved labs. They are not independently operated, thats for sure. I am lucky to be alive!

      I have had success with integrative physicians. Knowing, at the very least, the drug metabolism genes can be the difference between life and death for some at-risk people (especially as the population ages and drug metabolism goes way down anyway as we age). I hope that everyone on this board is inspired to get active in their care with genetic testing and addressing obvious environmental illness.

  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.

  9. Zak says:

    This right here is what is going to cure ALS at least in the short term. Please read this article and spread this around. Also try to see if your doc’s will prescribe you Requip (Ropinirole). Scientists until this study have been going about treatment identification all wrong. Cluster testing is the only way to determine efficacy for a large group of people without a Phase 3 Clinical Trial and the funding and time required.

    https://www.alzforum.org/news/research-news/treating-als-dish-models-point-drug-candidate-sporadic-disease

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