Dave Johnson's Proletariat Protocol

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Source for this document is a discussion thread on the ALSTDI forum, where also updates will be posted.

The PROLETARIAT PROTOCOL

A protocol (in this context) is a system of medical treatment. For the purpose of treating ALS, numerous protocols have been proposed, and some have resulted in credible reports of benefit for some patients. This is the ALSTDI "ALS Research & Treatments" forum: therefore we don't believe in "untreatable". ALS is treatable, and the question is which treatments are most likely to produce benefit.

Of reported therapeutic successes, most have come from patients who knew how to do medical research and who had money to spend doing their own thing. My own story is like that. Unfortunately the average ALS patient does not know how to do medical research and doesn't have much money to spend on therapeutics. (Insurance won't pay for ALS therapeutics, it's cash out of pocket.) Furthermore the average ALS patient does not have a medical doctor who knows anything about ALS therapeutics; or if the doctor does, the doctor will not apply that knowledge to help the patient.

The Proletariat Protocol is aimed at patients in the USA who are newly diagnosed and are trying to get started on a therapeutic protocol as fast as possible without having to spend a lot of money or to depend on their medical doctor for advice. This particular version is my (Dave Johnson) version. ....... Other "ALS Yodas" are invited to publish their own versions, keeping in mind what a "Proletariat Protocol" is and is not. Proletariat Protocols are not a replacement for other protocols which are based on other criteria or are intended to target specific therapeutic concerns.

BOILERPLATE: This is not "professional medical advice", that's what your neurologist is for. (Good luck on that one!) These statements have not been evaluated by the FDA. For general information purposes only. Offer void where taxed or prohibited. Subject to change without notice. Your mileage may vary.

WHAT IS "ALS"? If you've been diagnosed with "ALS", you have amyotrophy, but nobody knows whether or not you have lateral sclerosis. And you do have upper motor neuron disease even though the phrase "ALS" doesn't indicate that. When you read or hear "ALS", it's best to mentally substitute the international phrase "Motor Neuron Disease" which is more scientific, and which also tacitly admits that we're referring to a syndrome. We're not making assumptions regarding the cause of the observed disease condition or the biological processes which underlie it. As it turns out, MND is marked by diversity of clinical signs and symptoms, diversity of causes, diversity of biological processes, and diversity of outcomes. What's not diverse is the neurologist's proposed therapeutic regime: "Sorry chap, the Merck salesman was just here an hour ago and they still ain't got anything. Could I interest you in a clinical trial?"

As a newly diagnosed ALS patient, you probably don't know what caused you to get ALS. The field of ALS genetics and disease marker discovery is making progress in these areas, but what the scientists may do 5 years from now is no help for you today. When it comes to treating ALS, you're on your own. Sorry, that's the current state of the art. Treating ALS is a do-it-yourself project. Fortunately, when it comes to DIY ALS therapeutics, this very forum is the best place on the entire planet. When I say "best", I mean that nothing else is even in second place. This is where the action is.

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So, how good is the Proletariat Protocol compared to anything else? Heckuva good question, and unfortunately no straight answer is possible. Here's my best stab at it.

1. Let's begin with what the Proletariat Protocol is and isn't. It is a cocktail approach based on readily available inexpensive ingredients. It is fairly general, not making very much distinction between different types of ALS. It does not address the issues of hypermetabolism & muscle wasting, which deserve their own additional protocol, presumably ketogenic diet. And, inasmuch as it does not include any therapeutic strategy knowingly targeted to genetic defects in glia/astrocytes, the Proletariat Protocol will probably not do very much for patients having such genetic defects (for example fALS mSOD1).
2. Sorry to sound so pessimistic. On the upside, most patients who have credible reports of major therapeutic benefit, were doing a protocol of this same general nature. It's that track record of occasional success with cocktail therapies that led to the Proletariat Protocol.
3. What makes this particular Protocol different from all the others, is that this one was developed in plain view right here in the ALSTDI Research & Treatments Forum, with critique by some of the smartest ALS researchers on the entire planet. Although Dave J. is the guy actually doing this project, it has been and continues to be a project with quite a bit of PALS and research community involvement. It's got peer review.
4. The Proletariat Protocol is not driven by commercial considerations. I'm not selling any ALS-related products or jockeying for a job with a biotech company. That having been said, Life Extension Foundation was an early leader in the field of do-it-yourself ALS cocktail therapeutics and I've been trying to drag them back into it. Sorry to report that so far my invitation has gotten no traction.

THE PROLETARIAT PROTOCOL Dave J. version

BASIC PRINCIPLES

The components of the Protocol comprise three major categories:

1. Lifestyle do's and don'ts.
2. "Pills" (actually, mostly capsules) which may provide immediate symptomatic improvement. Most of these may also slow disease progression, but their potential to provide immediate results makes them of special interest.
3. "Pills" the purpose of which is to slow disease progression. It will probably take weeks or months (rule of thumb: 3 months) to know if they're helping, and since you'll be doing a pile of them, you won't know of the pills in the pile which ones are actually helping and which ones are a waste of money.

The long list of things which could have been included as components of the Protocol has been weeded down to just a few things according to the following preferences.

1. It's gotta be cheap and available in the USA without assistance from a medical doctor. (This is a fundamental criterion for inclusion.)
2. There has to be a body of science suggesting its probable usefulness.
3. It has to be nearly without downside risk.
4. I have relied heavily on credible reports of efficacy coming from persons who post on this forum. To me, one credible anecdotal report of efficacy is worth more than a hundred PubMeds. A lot of PubMed is absolute crap, and even the reported results of clinical trials should be subjected to ruthless critique. (We're good at that here.)
5. Therapeutic components (usually "pills") that may produce immediate (within hours or several days) symptomatic improvement are to be preferred over those which lack such potential. You can find out in a hurry what actually works for you and what doesn't.
6. Therapeutic components which are not aimed specifically at symptom improvement but rather at slowing disease progression, should have a pretty solid basis in the scientific literature. "Solid basis" in this context does not necessarily mean a long history or a huge number of publications, it's more about the quality of the basis.
7. A lot of what we think we know about the biology of ALS comes from research on one specific "mouse model", 93a. ALS is many diseases and nobody reading this is a mouse. Nonetheless I regard good quality mousework as superior to in vitro labwork, and regard claims of extension of life after disease onset exceeding delta 15 days as worthy of serious attention.
8. There is abundant evidence in both humans and in animal models that the ALS disease process is typically that of a "neurodegenerative cascade". The biological processes prior to symptom onset are those of homeostasis (keeping things in balance, even though something may be out of whack), whereas after symptom onset the body's attempt to maintain things in balance has failed and the body's attempt to clean up the resulting mess inadvertently winds up causing further damage to motor neurons. Therefore, a therapeutic regime, in order to be maximally effective, has to tackle a wide range of processes in an attempt to stop the neurodegenerative cascade and to enable the body to recover homeostasis. In practice, this means an effective protocol needs to be a pile of various components, it's not likely that any one "pill" is going to suffice to correct the problem.

LIFESTYLE DO'S AND DONT'S

• Exercise as you are able, but do not exercise to the point of extreme fatigue. http://blogs.als.net/post/Exercise-does-a-body-good-But-what-about-pALS.aspx Moderate exercise helps keep active the body's repair processes. But for someone with ALS, pushing beyond that into lactic acidosis is pushing into a regime that the body has lost the ability to compensate. .......The single most common anecdote among newbies is "a year ago I was running marathons, and now I can't walk without crutches, what happened?" That's not the most common anecdote you hear among heart attack or lung cancer victims. ALS is different from the customary couch potato degenerative diseases.
• Get plenty of sleep. In order to survive ALS your body's repair mechanisms have to be allowed to function, and most repair happens during sleep. http://ens-newswire.com/2013/10/18/brain-cleans-itself-of-toxins-during-sleep/
• If you're under a lot of stress, and if there's some way you can get out from under that stress, do it. Prolonged stress impairs your body's ability to repair itself.
• Regarding Vitamin A (including retinoids) supplementation, there is conflicting information. Natural dietary carotenes aren't a problem.
• Don't supplement with copper, and avoid foods high in copper such as shellfish. Don't use copper or brass cookware. (More on this subject later.)
• Don't supplement with iron, unless prescribed by a medical doctor for treatment of anemia.
• Don't supplement with "pills" that claim to increase SOD-1. Since wild-type (normal) SOD-1 can become misfolded (and therefore toxic)in sporadic ALS, such supplements are likely to make the disease worse.
• Don't go berserk piling on antioxidant supplements, choose antioxidants carefully. A lot of patients have tried flooding their bodies with all kinds of antioxidants (out of desperation, not knowing what else to do), and that approach has a dismal track record of failure. There are theoretical reasons to believe that overdoing the antioxidants may even throw your body's ability to control oxidation out of whack leading to accelerated disease progression. Do however make sure you have adequate vitamin C intake.
• Don't drink aspartame sweetened soft drinks. Most bodies are strong enough to handle that neurotoxin but yours may not be.http://www.als.net/forum/yaf_postsm387065_Glutamate-esp-biological-regulation-thereof.aspx#387065
• Don't eat foods that are high in free glutamate flavor enhancers such as MSG, soy sauce, hydrolyzed vegetable protein, yeast extract, or aged cheeses such as Parmesan. Most bodies are strong enough to handle a sudden excess of glutamate but yours may not be. http://www.als.net/forum/yaf_postsm387065_Glutamate-esp-biological-regulation-thereof.aspx#387065
• Avoid aluminum compounds. This means aluminum-based antiperspirants, alum as an additive to pickles, aluminum-based antacids, and the use of aluminum cookware where the food being cooked comes into contact with an aluminum surface.
• If you are taking statin drugs, either stop or begin supplementing with plenty of CoQ10. If your medical doctor argues with you, tell the cuss that ALS patients don't die from heart attacks, you want high cholesterol to protect what's left of your nervous system. It should provoke an interesting conversation......... You need to find out NOW what your doctor does and doesn't know, and what conversations are and aren't possible. ALS therapeutics are a DIY project and the question is not who can do it for you, the question is who can provide useful support on that very personal journey.
• If you're taking phytosterol nutritional supplements (esp. saw palmetto), stop taking them. Beta sitosterol does have certain health benefits, but over time it compromises brain health by substituting for cholesterol.

Whatever you do or don't do, first read up on it sufficiently that you at least know what it is and have some idea how it works. You don't have to become an expert on the stuff but you don't want to be popping pills without even knowing what they are. Wikipedia is usually the best place to start. In nearly every case there will be lots of info here, too, but plowing through the posts can be time-consuming and tedious.

Proleariat Protocol - addeds text after copying the original. To be edited before translation.

WARNING ABOUT RILUZOLE (RILUTEK)

Labwork using different methods substantiates this basic principle, and extends it to sporadic ALS in humans. This is well known (at this point) in the ALS research community but easily forgotten because it's so counter-intuitive.

Most therapeutic interventions proposed for ALS focus on helping the neuron survive the attack it's under. A few therapeutic interventions (generally in the "anti-inflammatory" category) hope to reduce the intensity of the attack or to eliminate it. The Proletariat Protocol includes therapeutic interventions in both categories.

The underlying theory of the Prole Prote is that of the "neurodegenerative cascade", a theory which includes as a basic element the idea that damaged neurons release proinflammatory cytokines which sustain the attack. The "neurodegenerative cascade" theory does not address the question of why the attack began in the first place.

It appears that at least in the case of SOD1 fALS, the attack is going to proceed because of a fundamental defect in the astroglia, without dependence on release of proinflammatory cytokines by damaged neurons to maintain the attack. Therefore a protocol such as the Prole Prote, although it may prolong life somewhat in an SOD1 sALS patient, is not going to halt the disease much less make recovery possible. This is more than just a limitation of the Prole Prote, it indicates a fundamental inability of the G93a mouse model to be used for testing therapeutics intended for a sporadic ALS patient population.

The problem goes beyond SOD1 fALS, it extends to any case of ALS which is initiated and sustained by a fundamental genetic defect in the astroglia.

I'll stretch this line of reasoning a bit further. ALS is not "a disease", it is a collection of many different diseases, a fact better grasped by replacing the misleading acronym "ALS" with "Motor Neuron Disease". There are credible reports of varying degrees of therapeutic success, mostly with cocktail approaches that have a lot in common with the Prole Prote. And, reports of no apparent benefit as well. Some of this variability in results is obviously attributable to the fact that every DIY'er does their cocktail differently, but some has to be attributable to variability in what disease is actually afflicting the patient. And the patient rarely knows what disease that is, other than that is some kind of nebulous "ALS" thing.

There have been a few reports of definite therapeutic success from monotherapies: joelC (IV glutathione) and (as I recall) an animal model using a copper chelator and another using a small-molecule antioxidant. The animal models aren't representative of sporadic (that's not even possible with animal models), they're usually a mutant SOD1 model.

Somewhere along the line I've read of purported effective "alternative medicine" treatment of gliomas, but paid little attention to it because I didn't think it was directly applicable to ALS. Nemesis' post has changed that perspective.

Because of the importance of this line of reasoning to therapeutic strategies, I will cross-post some version of this to a couple of other threads.

Dave Johnson's case history

People occasionally ask me about my personal case history. Rather than retelling it over and over, I'll stick a summary here where it's easy to find.

Onset early 2005, upper and lower motor symptoms, rapid progression, no bulbar. Usually required crutches for ambulation. Self-diagnosed Dx late spring, confirmed by neurologist summer and reconfirmed by another neurologist in October. Some respiratory impairment Aug through Oct.

Had been researching therapeutics and began a protocol generally similar to the Prole Prote in August. At that time I didn't know anyone else who'd done this type of protocol and frankly my expectations were low. During the fall, symptoms were highly variable but my worst days were no worse than they had been earlier in the year, and on good days I decided not to use the crutches any time I didn't really have to. By November the respiratory impairment (diaphragm involvement) was gone. By December most of the time I didn't need crutches.

Began Jan 2006 with the crutches in the closet. During winter-spring re-learned how to run and to kick (had to figure it out, not just a matter of regaining strength, similar to what stroke victims describe) and by early summer was nearly fully recovered. Next several years did some good mountain hiking upon occasion, but the last 4 years or so symptoms have been returning enough to cause impairment esp. upper motor neuron. Last good hiking was July 2012. Oct 2013 I went hiking and people were asking if I needed to be rescued, it was that ugly. I knew my limits and got out. Despite application of "jock science", I suffered a neurological setback (sometimes back on crutches). Since I hadn't had a setback like that before, I figured it was now "end game". However, gradually recovered over a period of a couple months. These days (spring 2014) I use a cane but don't need crutches.

I'm hoping for some good new developments in therapeutics this year to keep me going. Zinc gluconate and 5-HTP are now regular items in my diet, and switched to LEF Peony Root Extract which is much higher dosage than the Roex I had been taking. Magnolia has also been a help, suppressing vagus hyperreflexia (esophageal spasm etc.) to where I can reliably get the Pile of Pills down. The vagus hyperreflexia I've had for about 15 years, and doesn't seem to be related to the ALS.

Regarding the specifics of my therapeutic regime over time, the information is scattered. There are links to most of the pieces in the Peony thread http://www.als.net/forum/yaf_postst48193_Peony-root-and-paeoniflorin-long-essay.aspx

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18 May 2014 The following is a sneak preview of the next "Pile of Pills" and instructions what to do with it. The information is arguably useful to anyone about to embark on some version of the Proletariat Protocol. I'll eventually transfer this information to the Pile of Pills thread when I'm back to actually putting piles of pills into boxes.

NEXT PILE OF PILLS

CONTENTS OF THE PILE

• Wal-Tussin DM liquigels, 15 mg
• Trimethylglycine caps, 750 mg
• 5-HTP caps, 100 mg
• Gamma E toco's softgels,470 mg
• Licorice root extract caps, 450 mg
• Vit D+K+iodine caps, approx 4 mg
• Zinc (as gluconate) caps, 25 mg
• Milk thistle extract softgels, 460 mg
• Ibuprofen caplets, 200 mg
• CDP-choline caps, 250 mg
• Celery seed extract caps, 75 mg
• B-12 methylcobalamin tablets, 5 mg
• Vit B-50 complex caps, 850 mg
• Curcumin complex caps, 400 mg
• Carnitine complex caps,700 mg
• R-lipoic acid caps, 300 mg
• Magnolia bark extract caps, 30 mg
• Resveratrol tablets, 17 mg
• Niacinamide caps, 250 mg
• Benfotiamine caps, 150 mg
• Selenium (methionine) tabs, 0.1 mg
• N-acetylcysteine caps, 600 mg
• Peony root extract caps, 600 mg
• Ubiquinol liquicaps, 100 mg
• Magnesium (taurate) caps, 125 mg

PILE OF PILLS: DISCUSSION

First, the boilerplate

You know I'm not a medical doctor, you know that this pile of pills comes with no warranty other than there has been no intentional material misrepresentation on my part, and you acknowledge that nobody knows the outcome of taking this pile of pills. It's a box of stuff that you want because having informed yourself regarding its contents, you believe it might be beneficial to you. You understand that my "advice" and "recommendations" regarding this stuff comprise nonprofessional (although hopefully well-informed) opinions, and not more than that. If you utilize materials or information that I have provided, you acknowledge that you are doing so having researched these things yourself, and having done so that you are acting on your own personal knowledge and opinion.

Introduction

This Pile of Pills corresponds loosely to the toplist of the Proletariat Protocol. This Protocol comprises more than a pile of pills: it also involves diet and lifestyle practices. Those are things I can't ship in a box, you have to take responsibility for them yourself.

There's a lot of pills there, and if you simply start out the first day with the full regime, if you have unwanted side effects (or for that matter immediate beneficial effects) you won't know what caused them.

The Pile of Pills does include several items the primary purpose of which is symptomatic improvement. However the Proletariat Protocol is designed around the theory of the “neurodegenerative cascade”, and every day that the neurodegenerative cascade continues, additional permanent damage is done. Therefore, I suggest starting out with stuff that's not likely to have any immediate symptomatic effect, but which may begin targeting neurodegenerative processes. A few people may have undesirable reactions to "pills" that otherwise rarely cause problems, and if you're one of those few people you need to find out immediately. More on this in the next section.

Before taking any “pill” (even a prescription from a doctor), first go on the Internet and read at least the following pieces of information:

1. The information about the product on the manufacturer’s website. It’s important to know what the “pill” actually is.
2. A Wikipedia article on the substance in question.
3. The Proletariat Protocol, see what information may be there about the stuff. ……...These are pills you may be taking every day for years, so it’s not unreasonable to spend half an hour researching each one before beginning to take it. You might even decide based on that research that you don’t want to take the “pill” after all. ALS therapeutics are a do-it-yourself project, every patient’s case is different, and everyone’s life circumstances are different. Therefore you have to be the one to decide what to take or to not take, those are decisions nobody else can make for you.

The science of ALS therapeutics is in its infancy. Almost nothing is known for certain, and there are constantly new developments in opinions regarding therapeutics for ALS. Therefore please keep in touch with what’s happening on the ALSTDI Treatments Forum. I realize that for most people it is not practical to read everything posted, there’s just too much of it, and most folks lack enough education in molecular biology to understand it even if they do read it. There are two ways to keep the effort of continuing education manageable.

1. When there is a new development which I believe warrants a revision in the information in the Proletariat Protocol document (first post in the thread), I update the document. So if you check the Protocol twice a month, you’ll be reasonably up-to-date on that.
2. When you see a thread pop onto the first page of the forum the topic of which concerns something you’re actually taking or doing, check the new posts to see if they’re relevant to you.
3. If you have a question, post it in the appropriate forum. That’s a good way to get a quick response from people who might actually know something about it. What’s more, we often learn from questions, so questions are welcome.

Stuff to begin with

I recommend to begin immediately with the following items that are extremely unlikely to have any immediate effect, either positive or negative. If there is a negative effect, stop taking all of it and reintroduce the items one item at a time, a new item every two days. If a particular item seems to have unwanted side effects, omit it. …..What you perceived as an unwanted side effect was probably just a coincidence. Later on when your “pill regime” has stabilized, you can reintroduce it again to see what happens.

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LEF N-Acetyl-L-Cysteine (NAC), 600 mg x 60 caps. LEF #01534, cost $10. Dosage: twice a day. Supports synthesis of glutathione, a key antioxidant esp. for neurons, and also an immune modulator. NOTE: there are anecdotal reports of symptomatic improvement after a few days of NAC supplementation. For this reason I regard NAC as the very first best thing to start out with. WARNING: if you have ever experienced cysteine urinary tract stones, skip the NAC until you’ve first consulted with a medical doctor, then decide which risk you’d rather take.

Vitamin Shoppe Selenium (methionine) tabs, 0.1 mg x 300, cost $14. Dosage: one a day. Selenium is an essential mineral for synthesis of glutathione.

LEF European Milk thistle extract softgels, 460 mg x 60, #01822C, cost $17. Dosage: one a day. This is an advanced formulation. Milk thistle extract supports glutathione production by the liver. Glutathione is an antioxidant of critical importance to neurons. It also modulates immune function. NOTE: the bottle recommends dosage 2 times a day. In my opinion they’re just trying to sell more pills. With this advanced formulation, once a day should be sufficient.

Allergy Research Group TMG (Trimethylglycine) caps, 750 mg x 100 , cost $18. Dosage: twice a day. Methylating agent (helps suppress homocysteine, a cause of inflammation), and is synergistic with zinc and alcohol at the neuromuscular junction in protecting against excitotoxicity. NOTE: Yep, I said alcohol. As I explain in the Proletariat Protocol document, “some people should drink, and some shouldn’t”. There are several reasons to reason to think that alcohol is beneficial in ALS among people who should drink. If you’re among those who know from prior experience that you shouldn’t drink, I don’t recommend starting just because you developed ALS.

LEF Gamma E Tocopherol/Tocotrienols, 470 mg x 60 softgels. LEF #00559, cost $25. Dosage: one a day. Antioxidant support of particular importance to neurons. Best absorbed if taken with a meal that includes fats/oils.

LEF Vitamins D and K with Sea-Iodine, 60 capsules. D=5,000IU, K=1.1mg, iodine=1mg. LEF #01741, cost $15. Dosage: one a day. Vitamin D is anti-inflammatory, and Vitamin D and K together manage the body’s storage and use of calcium. Iodine supports thyroid function.

Vitamin Shoppe B-Complex 50, 850 mg x 100 caps, cost $10. Dosage: one a day. General neurological and health support. The various specific B-vitamins play different roles in the body. This particular product seems well balanced for use in ALS, and the niacin is in the form of niacinamide in order to avoid “niacin flush”.

Twinlab Mega B-12 Dots (sublingual tablets), 5 mg x 60, cost $ 11. Dosage: 1 a day. I thought this was methylcobalamin but reading the fine print I see it’s cyanocobalamin which is widely regarded as an inferior form, sorry! I’ll be more careful next time. Unlike some vitamins, B12 is safe to megadose (this is 800 times the RDA). Many people regard oral B-12 megadosing to be beneficial in neurodegenerative disease. I regard that evidence as flimsy. Nonetheless the stuff is harmless, it doesn’t even need to be swallowed, and it might help. NOTE: since the B-Complex also contains B-12, it’s best to take the B-12 “dots” during the meal that you don’t take the B-Complex, therefore maintaining a more stable blood level of B12.

Dr. Mercola Ubiquinol (CoQ-10) liquicaps, 100 mg x 30, cost $22. Dosage: one a day. Ubiquinol is the preferred form of CoQ-10, a mitochondrial antioxidant. Best absorbed if taken with a meal that includes fats/oils.

Natural Factors Celery Seed Standardized Extract (3nB) caps, 75 mg x 60, cost $14. Dosage: one a day in the evening. Anti-inflammatory of special interest in neuroinflammation. NOTE: “in the evening”, because it alternates with the somewhat similar acting curcumin which is taken in the morning. The reason for 3nB in the evening (and not the morning) is because 3nB is probably the more effective of the two in suppressing inflammation associated with gout, that most often develops during the night.

If all that goes fine for several days, then:

LEF Super R-Lipoic Acid, 300 mg x 60 caps, #01208, cost $31. Dosage: twice a day. Mitochondrial antioxidant. The R- form of alpha lipoic acid is the preferred form. A few people experience mild stomach upset with alpha lipoic acid. If this happens, my recommendation is to keep taking it anyhow, your stomach will probably quickly accommodate to it.

LEF Optimized Carnitine (Carnitine complex) caps, 700 mg x 60, #00916, cost $22. 400 mg ALC, 150 mg ALC arginate, and 150 mg Glycine propionyl-L-carnitine. Dosage: two a day. Mitochondrial energy chain support. Traditionally paired with alpha lipoic acid.

LEF Super Bio-Curcumin, 400 mg x 60 caps. LEF #00407, cost $24. Dosage: once a day in the morning (see previous comments on 3nB). Anti-inflammatory, crosses BBB. This formula is an advanced formulation. WARNING: If you have a history of gall bladder problems, do not take this without first consulting with a medical doctor.

If that goes well for two days, then introduce the following, one at a time every two days:

Extreme Gluzin Zinc 25 mg (as gluconate) x 120, Extreme #V-1431, cost $22. Dosage: twice a day immediately before meals. The purpose of zinc is to inhibit copper toxicity, and the gluconate form taken immediately before meals is preferred because it inhibits absorption of copper from the digestive tract and itself has high absorption. If your copper bloodwork test results suggest high copper, 3 times a day is probably more appropriate dosing. NOTE: A few people might experience mild digestive upset or odd taste sensations: my recommendation is to continue even if this occurs, your system will probably get used to it.

Cardiovascular Research Ltd. Magnesium Taurate, 125 mg magnesium capsules x 60, Vitamin Shoppe item CV-1094, cost $11. Dosage: two capsules twice a day. Magnesium and the amino acid taurine are inhibitors of glutamate excitotoxicity, usually taken separately but this particular formula combines them. NOTE: a few people may experience a mild laxative effect from the magnesium. If this occurs, my recommendation is to cut back to one capsule twice a day, and then boost it to 2 caps twice a day a week or so later.

Well at Walgreens Ibuprofen 200 mg caplets x 100, item #500733, cost $7. Dosage: one caplet twice a day. Anti-inflammatory. Note: a few people may experience stomach upset. If this occurs, discontinue. Your system won’t get used to it.

Twinlab Resveratrol Max Dots (sublingual tablets), 17 mg x 60, cost $15. Dosage: one caplet twice a day. Widely believed to be “healthy stuff”, although the underlying science is complex. In my opinion, this relatively low dosing level is to be preferred over the megadose “pills” commonly being marketed these days. Resveratrol is a co-factor with niacinamide.

Jarrow Niacinamide (nicotinamide) capsules, 250 mg x 100, cost $9. Dosage: one capsule twice a day, take with resveratrol. Note: although niacinamide isn’t supposed to produce the “niacin flush”, a few people may experience some flushing anyhow, a nuisance which goes away typically in about 15 minutes. Also: some patients within several days of niacinamide supplementation may experience symptomatic improvement in lower motor neuron symptoms. Note: if you are supplementing with nicotinamide riboside, that stuff replaces niacinamide so don’t do the niacinamide. The 50 mg of niacinamide in the B-50 is okay, don’t worry about that.

Doctor’s Best, Best Benfotiamine capsules, 150 mg x 120, cost $23. Dosage: one cap per day. Benfotiamine is a semisynthetic special form of the B-vitamin thiamine which may be of special importance in treating neurodegenerative disease and which also inhibits the formation of toxic protein-sugar complexes (glycation).

Items that may provide quick symptomatic improvement, and possibly long term benefit:

Go several days between each item before introducing a new one into your protocol. This way you can tell what produced symptomatic improvement and what doesn’t. ……...Items which produce no symptomatic improvement may nonetheless be beneficial in slowing neurodegeneration, so just because an item doesn’t produce symptomatic benefit doesn’t necessarily mean you shouldn’t be taking it.

Walgreens Wal-Tussin (R) liquid-filled capsules, 20 to a bottle, item #669854. Each cap 15 mg dextromethorphan hydrobromide. Cost $6. Appears to be the same thing as Robitussin Long-Acting Cough-Gels (R). Dosing: 3 times a day. If you have pseudobulbar or bulbar symptoms, this is one of the first things you should try, maybe even the first thing. Many bulbar/pseudobulbar ALS patients experience significant symptomatic benefit from dextromethorphan. You’ll know within 2 days if it helps. If it doesn’t help, discontinue it unless you believe it may slow disease progression (there’s reason to think it may). WARNINGS: Some people metabolize dextromethorphan slowly, causing buildup over several days. If (especially after several days) you notice unusual mental symptoms (which could be just about anything), stop taking it. If after several days of no dextromethorphan the unusual mental symptoms have disappeared and bulbar/pseudobulbar symptoms are returning, then resume dosing at one capsule per day in the morning. Then increase dosage every several days up to a maximum of 3/day or until you get either symptomatic improvement or the unusual mental symptoms return. If the unusual mental symptoms return before you get symptomatic improvement, dextromethorphan is not for you, sorry! ALSO: If you are taking prescription drugs for depression, St. John’s Wort, or tryptophan or 5-HTP or other potent serotonin precursor, do not take dextromethorphan until you have informed yourself about potentially dangerous “serotonin syndrome” and have either discussed with your neurologist or have decided to proceed very cautiously knowing how to manage the risk. AND: dextromethorphan may be synergistic with dopamine-enhancing Parkinson’s drugs: therefore if taking Parkinson’s drugs do not take dextromethorphan unless you’ve had a discussion with your neurologist about recognizing symptoms of excess dopamine.

Jarrow 5-HTP caps, 100 mg x 60, cost $19. Dosage: one cap twice a day. This is a serotonin precursor. Although we usually think of serotonin in the context of treating depression, actually serotonin plays an important role in neurological health including that of motor neurons. Although the primary purpose of taking 5-HTP as a therapeutic in ALS is to retard neurodegeneration, some patients may also experience symptomatic benefit due to its antidepressant effect. Such symptomatic benefit, if it occurs, will usually be noticeable within a couple days, 5-HTP is quick-acting unlike many antidepressants which take a couple weeks to kick in. WARNING: Don’t mix with other serotoninergic agents without first becoming informed regarding the dangers, please see the remarks about this in the discussion of dextromethorphan.

Roex Magnolia Extract 30 mg 90 capsules, item #85090, cost $15. Dosage: 2 to 4 caps a day, whatever seems to work best for you. Magnolia bark extract is usually regarded as an anti-anxiety therapeutic, but some patients experience improvement in bulbar and/or pseudobulbar symptoms as well. You’ll know quickly if you get symptomatic improvement. If you have problems with esophageal spasm or acid reflux, magnolia may also help with that as well. There’s reason to think that magnolia may also retard neurodegeneration, but the evidence for that is not sufficiently persuasive to recommend taking magnolia for that purpose alone.

LEF Peony Immune White Peony Root Extract 600 mg x 60 caps, standardized to 252 mg paeoniflorin. LEF #01811, cost $22. Dosing: one capsule per day. The primary purpose of the Peony is long-term (based primarily on heat shock protein activation), but some people may experience immediate symptomatic improvement in either or both upper and lower motor neuron symptoms due to its ion channel modulation characteristics. Peony is normally dosed together with licorice extract, which boosts its efficacy: see next item.

Nature's Answer Licorice root single herb supplement. (non-dgl), 450 mg x 90 capsules. LEF #28567, cost $6. Dosage: one cap per day. Licorice has a number of therapeutic actions: the one that matters to us is that it’s a co-factor with Peony root extract, even though licorice itself is not a heat shock protein inducer. The biochemical glycyrrhizin is responsible for this effect, the commonly available deglycyrrhized licorice extract won’t work. WARNING: Glycyrrhizin may raise blood pressure. If you have blood pressure issues, monitor blood pressure on a regular basis (several times a day at first) to make sure that licorice root isn’t causing problems. ALSO: licorice may be incompatible with ginseng (blood pressure issues again), which some people take but I have a low opinion of the stuff myself.

LEF CDP-Choline Caps, 250 mg x 60 caps. [CDP-choline is the same thing as citicoline.) LEF #01659, cost $25. Some patients report symptomatic benefit (improved energy, reduced brain fog). Appropriate dosing based on patient reports is probably two caps at a time. Unknown if it has any impact on neurodegenerative processes, although I suspect it does help a little.

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What’s most important?

In the discussion above, I’ve grouped things in a certain way which emphasizes sequence in which to introduce things, assuming that within a couple weeks you’ll be doing most or all of it. There’s another approach, and that’s to begin with the stuff that’s probably most important. For your convenience, here’s a list of that kind. Unfortunately it’s mostly guesswork, but there is a little bit of science behind it.

1. Only if you have bulbar/pseudobulbar symptoms, start with dextromethorphan. If you don’t see symptomatic improvement, it stops being important.
2. Zinc gluconate.
3. Curcumin.
4. Magnesium taurate.
5. NAC + selenium.
6. Acetyl-L-carnitine (in this case ALC complex), + alpha lipoic acid (in this case R-lipoic).
7. Vitamin B complex.
8. Vitamin D + K.
9. Only if you have bulbar, pseudobulbar, or upper motor neuron symptoms: magnolia bark extract. If you see no symptomatic benefit, it becomes unimportant.
10. Vitamin E tocopherols and tocotrienols.
11. Trimethylglycine.
12. Peony root extract + licorice root extract.
13. 5-HTP.
14. Niacinamide + resveratrol.
15. CoQ-10 (in this case ubiquinol).
16. Milk thistle extract.
17. Benfotiamine.
18. Celery seed extract (3nB).
19. CDP-choline. If you see symptomatic improvement (if so, it’ll probably be an increase in energy or a reduction in brain fog), continue. Unknown if it has any benefit other than symptomatic.
20. Ibuprofen.
21. Vitamin B-12.

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Summary, grouped by therapeutic action

Anti-inflammatory Curcumin, 3nB, ibuprofen, Vitamin D, trimethylglycine

Glutathione support NAC, selenium, milk thistle extract, trimethylglycine

Mitochondrial support ALC, ALA, CoQ-10, some B-vitamins

Antioxidant ALA, CoQ-10, Vitamin E’s, some B-vitamins, plus anything in the category of “glutathione support”

Calcium channel modulator Magnesium, taurine, dextromethorphan, Peony root extract, trimethylglycine

Sodium and/or potassium ion transport modulator Peony root extract, possibly licorice

Serotonin agonist 5-HTP, dextromethorphan

Heat shock protein support Curcumin, Peony, Licorice

Heavy metal toxicity inhibitors Zinc, selenium, ALA.

Choline support CDP-choline

Immune modulator Vitamin D, zinc, iodine, anything having to do with glutathione support. Almost anything has some impact on the immune system.

END OF PROLETARIAT PROTOCOL DOCUMENT