ALS Part 3

INTRODUCTION

Amounts cited are daily dosage.  With most of the items the dosage is split half in the morning and half in the evening.  In general I haven’t named specific brands because I frequently switch brands due to availability or pricing.  I am knowledgeable enough about purchasing nutritional supplements and botanicals that I’m pretty sure I’m getting what it says on the label.

The list of stuff I take is pretty long.  Taking all those pills is a nuisance, and they cost money.  But they seem to be helping, and being healthy is cheaper than being sick.  By self-prescribing nonprescription items, I bypass all the hassles of dealing with the “medical establishment”.  And, get this…..  despite taking so many pills,  none of them are for the purpose of combating the unwanted side effects of other pills, because none of these things I take has any unwanted side effects that I’m aware of.  People who take a handful of synthetic prescription drugs every day are usually making themselves sicker:  we’ve all heard stories of people (usually old folks) who were doing miserably until they got a new doctor who told them to throw all their damn pills in the garbage.

Keeping that in mind, compare my choices of chemotherapy to what the drug companies are doing clinical trials on.  An ALS patient who is not dead, but rather half-dead, and needs treatment for the side effects of the ALS meds, is a much more profitable patient than one who has managed to return to a more or less normal life.  …… Nonetheless, the drug companies have produced some really worthwhile medicines for many diseases, and I hope they will come up with something really good for ALS as well.

              To combat excitotoxicity:

 MAGNESIUM CITRATE   400 mg   

Magnesium is generally regarded as a worthwhile supplement, inasmuch as the American diet tends to be deficient in it.   The citrate form is preferred because it is readily absorbed, has less tendency to provoke digestive disturbances than the more common mineral forms, and supplies citrate, a chemical pH buffer, and which is active in the Krebs cycle.  Citrate could be regarded as a dietary adaptogen and is used in naturopathic medicine primarily in the hydroxycitrate form as Garcinia extract.

In nerves, calcium ions are excitory.  Magnesium helps maintain calcium ion balance by partially blocking the glutamate-modulated Ca++ channel.  The role of magnesium in preventing muscle cramps, treating mood disorders, and in reducing blood pressure is well known.

Most “authorities” recommend supplementing calcium-magnesium in a 2:1 ratio.  I get plenty of calcium in my diet from eggs, cheese, and cabbage, and do not supplement with calcium.  Incidentally, I have not seen any evidence that blood calcium levels are any higher in individuals with ALS than in normal persons, nor do I believe they are.

Magnesium is essential for bone health.

N-ACETYL CYSTEINE  1,200 mg   

This is a precursor to glutathione, the queen of nervous system antioxidants.  Supplementing is shown to increase glutathione synthesis in nerve cells, removing glutamate in the process.

Supplementing with glutathione itself is generally ineffective because the digestive system dismantles it, and because it does not cross the blood-brain barrier.

METHYLCOBALAMIN   a form of Vitamin B12 (cobalamin)

Methylcobalamin is the form of B12 which is active in nervous tissue.  The body converts other B12s to methylcobalamin, but not very efficiently.   

Methylcobalamin plays a role in the regeneration of neurons and myelin, and its methyl group is believed to protect against glutamate toxicity (a presumed major factor in the ALS neurodegenerative process). 

Methylcobalamin is also believed to make alpha lipoic acid, another nutritional supplement often used for treating neuropathy, more bioavailable.

The dosage believed to be useful in treating neuropathy is much higher than “regular nutrition”, on the order of 10-40 mg daily sublingually.   My daily dosage is variable but tends to run 10-20 mg.

References:  http://immunesupport.com (search “Neuro B-12)

TAURINE   2 grams  

Taurine is an amino acid which has received use as an antidote to glutamate poisoning (protects against excitotoxic glutamate damage) and mild anticonvulsant.  It is a weak inhibitory neurotransmitter which acts somewhat like GABA to which it is chemically related.  It also lowers serum cholesterol. 

Therapeutic dosage is several grams per day.  It’s used mostly by bodybuilders for reasons unrelated to ALS therapy. 

L-THEANINE

The calming agent in tea.  Chemically related to glutamate, but then so is GABA.  When I first learned about it, it looked promising, but I decided not to take it until I had more information on its biochemistry as it relates to glutamate.  About 10 January 06 I found additional information on the Life Extension Foundation website which persuaded me to start taking it.  I’ll provide further documentation on the next comprehensive rewrite.

         Antioxidants and glutathione support

There are many good antioxidants available.  I prefer those which are believed to have therapeutic activity above and beyond their role as antioxidants, or which play that role particularly in neuron energy processes.  Nervous system tissue uses energy at roughly 10 times the average rate of other body tissues, and energy production processes produce free radicals which need to be mopped up before they cause damage.  That’s why cellular energy support and antioxidant level maintenance are so important in treating diseases of the nervous system.

N-ACETYL CYSTEINE   Glutathione precursor:  see entry above.

ALPHA LIPOIC ACID    300 mg    

Although usually regarded as a mere anti-oxidant, alpha lipoic acid plays an essential role in energy metabolism.  In doses large enough to be effective as an antioxidant (100-600 mg/day, sometimes higher) it is being used experimentally to treat nerve damage.  It’s unknown how effective it is in this application.  The stuff so far appears to be safe.

One ALA supplement named “Juvenon”, patented by UC Berkeley, is combined with acetyl-L-carnitine, another chemical involved in energy metabolism. 

References:  berkeleywellness.com/html/ds/dsAlphaLipoicAcid.php ; nutritionreporter.com/Alpha-Lipoic.html

ACETYL-L-CARNITINE  1,000 mg 

Carnitine is an amino acid which is an antioxidant, and which is involved in energy metabolism.   Acetyl-L-carnitine is probably the preferred form for nerve health.

References:  http://nutritionreporter.com/carnitine_helps.html

COENZYME Q10  (“ubiquinone”)  300 mg

Involved in energy metabolism; also an antioxidant.  Widely used outside the US to treat heart disease.   Therapeutic dosage is 200-400 mg daily.  There are evidently no unwanted side effects.

References:  http://nutritionreporter.com/CoenzymeQ10.html

SELENIUM  200 mcg

Selenium is a necessary element in an enzyme which reconstitutes “used” glutathione.

VITAMIN C   1,000 mg

Queen of the water-soluble antioxidant vitamins, and especially active in stabilizing glutathione by keeping it in its reduced (unoxidized) state.  Shown to improve life expectancy in SOD-1 defect mice.

VITAMIN E   800 IU   as mixed dextro tocopherols

Queen of the fat-soluble antioxidant vitamins; and like vitamin C, active in stabilizing glutathione.

                  Cellular energy support

All the things I take for cellular energy support are listed above in other categories.  They are:  alpha lipoic acid, acetyl-L-carnitine, CoQ10, and arguably citrate.

                             Nerve support

VITAMIN B COMPLEX  

The one I’m presently taking is KAL B-Complex Super Strength, one caplet twice daily.  I do not rely on B-complex for B-12 which I take separately as sublingual methylcobalamin.

SOY LECITHIN  one rounded teaspoon

Lecithin is a group of fats which contain phosphorous.  Lecithin is widely believed to be helpful in maintaining nerve health, especially of the myelin sheath.   Phosphorous is essential for good bone health but is not usually deficient in the American diet.

OTHER STUFF

A number of items listed in other categories above are often described as “for nerve support”, particularly methylcobalamin, alpha lipoic acid, and acetyl-L-carnitine.  I take SAM-e on a rather haphazard basis (haphazard because it can’t be taken with meals).

Anti-inflammatories and joint and bone support

Most ALS patients are in an age group (like myself, presently 59), who tend to be susceptible to arthritis and osteoporosis.  In order to do a good job with physical therapy, it’s necessary for the therapy (including ordinary things like walking) to be as pain-free as possible. 

The mainstay treatment for arthritis is anti-inflammatories which inhibit COX-2.  There are many researchers who believe that inflammation is an important part of the neurodegenerative process in ALS, and that anti-inflammatory drugs may prove useful a part of a therapeutic regime.

TURMERIC EXTRACT, 95% CURCUMINOIDS  900 mg

Turmeric is the queen of the Ayurvedic anti-inflammatories, as well as a spice and coloring agent widely used in foods.  It is a COX-2 inhibitor.  Unlike many over-the-counter synthetic anti-inflammatories, it does not run the risk of stomach damage because it does not inhibit COX-1, which protects the stomach.   Turmeric is generally thought of as being safe and without side effects:  however, it increases bile production which may increase cholesterol levels or have an impact on patients with gallstones.

GREEN-LIPPED MUSSEL (Perna Canaliculus)  1,000 mg

A COX-2 inhibitor; also supplies small amounts of glucosamine and chondroitin, does not inhibit COX-1.  The only brand I’m aware of is “Sea Mussel”, distributed by FoodScience of Vermont.

About 10 years ago I began occasionally to experience joint discomfort.  About 4 years ago I decided it was becoming enough of a nuisance to be worth doing something about.  After careful research this is what I decided to try.  Within a couple weeks joint discomfort was gone and stayed gone, other than those rare instances where I pushed something beyond its normal limits (as happened in November of 2004).

VITAMIN D   1,000 IU

Folks with ALS usually don’t get much sunshine, so they need to take sunshine in pill form.  400 IU daily is the recommended dosage for people age 51-70 (the age group most affected by ALS).  Dosage up to 800 IU is safe for most people; however daily consumption over 2,000 can result in side effects the opposite of what’s intended, with loss of bone minerals and muscle weakness.   On days where I’ve gotten substantial sunshine exposure I skip the vitamin D pill.

Vitamin D may be helpful in treating depression, especially if associated by lack of exposure to sunlight as is the case with seasonal-affective disorder (“winter blues”).

Vitamin D is a co-factor with magnesium.

References:  http://nutritionreporter.com/New_Look_at_Vitamin_D.html

BORON   3 mg

Boron helps strengthen bones.

 GLUCOSAMINE  1,500 mg  and CHONDROITIN 1,200 mg

Well-known cartilage repair & maintenance substances used in treating arthritis and knee injury.  Usually taken together.

OMEGA-3’s as organic ground flaxseed:  one heaping spoonful

Omega-3’s are anti-inflammatory especially if the diet is high in Omega-6’s which tend to promote inflammation.  It’s not like the 3’s are “good” and the 6’s are “bad”:  it’s a matter of having them in a balanced ratio.  The American diet is typically very high in Omega-6’s from cheap vegetable oils, and low in Omega-3’s.  The most widely known source of Omega-3’s is coldwater fish; however because of my gout and because of the health benefits of flaxseed besides the Omega-3’s, I prefer to take flaxseed.

IBUPROFEN

I take ibuprofen (an over-the-counter NSAID anti-inflammatory and pain reliever) when I am experiencing joint discomfort or if I have engaged in exercise which I believe may lead to subsequent discomfort.   Ibuprofen bothers some people’s stomach but I have no problem with it.

NSAIDS are no substitute for the natural stuff.  We all know people who have arthritis who go to doctors, and get a prescription for a synthetic NSAID.  Yet the person continues to have arthritis and it continues to get worse.  This is the wrong outcome!  I did have arthritis and now I don’t, thanks to the natural stuff.  Much better outcome.

                             Adaptogens

HOLY BASIL (TULSI) std. to 2.5% ursolic acid:  900 mg

Holy Basil is the queen of the Ayurvedic strengthening adaptogens.  It is also believed to improve mind function and to be neuroprotective.

 DONG QUAI (Angelica sinensis) ROOT   1,000 mg

This is a balancing adaptogen in the traditional Chinese system.  It’s usually thought of as a “women’s herb”.  However in a review of a number of reports of ALS patients being treated by traditional Chinese methods, every practitioner used Dong Quai.  It is on the strength of that tradition that I am taking Dong Quai. 

Note:  I’ll add the reference to the aforementioned review the next time I come across it in my files.

                      Other stuff I’m taking

ST. JOHN’S WORT  standardized 0.3% hypericin:  900 mg

I struggled with depression all my life, and learned to manage with it.  About 10 years ago CBS ran a lengthly “60 Minutes” essay on St. John’s Wort, and I paid attention.  When seasonal depression started kicking in early that year (late August) I bought some St. John’s Wort and started taking it.  The stuff works for me without any noticeable side effects.  Now that I’m working indoors all day, I take it even during the summer.  I frequently substitute Perika ™ which is standardized for hyperforin:  I can’t tell the difference.

Clinical studies of St. John’s Wort haven’t dealt with the question of long-term risk, and so far every theory of how the stuff works seems to be full of loopholes.  I think that comparison with synthetic antidepressants has the researchers barking up the wrong tree.  They’re looking for direct neurological effects, whereas I believe it works on the pineal gland to trick the brain into thinking it’s spent the day outdoors.  But hell, I’m just an unqualified ignoramus.  How can that compare with a succession of certified experts who have come up empty-handed?

Concerned about the fact nobody seems to know how the stuff works, I spent some time searching the Web looking for evidence of an association between St. John’s Wort use and ALS.  The search turned up nothing, not even evidence that anyone else was asking the same question.

SAW PALMETTO and PYGEUM

About 6 years ago I began to have symptoms of prostatic hypertrophy (urgency, afterdribble).  So I began taking saw palmetto, and got results.  Perhaps half a year later I began to slack off, and got lazy about replenishing the supply.  For several years I was symptom-free despite taking the stuff on a very irregular basis, and being casual about it because I was free of symptoms.

In 2005 I began to experience recurrence of symptoms and am now taking both saw palmetto and pygeum on a regular basis.  As of February 06 the symptoms have largely abated but are not gone entirely.  UPDATE:  April 06 continued improvement, symptoms infrequent and mild.

BEER

I drink on the average of 4 cans of regular beer, or the ethyl alcohol equivalent in sturdier stuff such as “ice brewed” or malt liquor.  Since last May I have found this particularly helpful in reducing spasticity and fatigue to enable evening exercise which would otherwise have been difficult or impossible.  I call this in plain English “loosening up my leg so I can walk”.

I know red wine is supposed to be better for you, and I do drink it occasionally, but it doesn’t agree with my stomach nearly as well as beer does.  I almost never drink hard liquor.

                Stuff I’m not taking

RILUZOLE

Prescription drug, $600- $900 per month, said to prolong lifespan in ALS patients by (average) 3 months.  However there are potentially serious side effects, and the clinical studies came up short on the question of whether quality of life was improved. 

Riluzole reduces glutamate in the nerve cells.  Not clear to me if the researchers know how it does that, or why it offers so little help. 

ASHWAGANDHA   Withania somnifera root

This herb is generally available only in the form of root or root extract.  The primary “active ingredients” are withania alkaloids.   The leaf is also pharmacologically active but with a somewhat different alkaloid profile.  

Ashwagandha is one of the staple herbs of Ayurvedic medicine.  A normal dosage is in the range of 2-5 grams per day of dried root.  It has a wide spectrum of effects generally considered beneficial to health.  It is considered very safe, but side effects can occur, generally not of a nature any more serious than to warrant discontinuing use.  Of specific interest to ALS treatment are its antispasmodic/relaxant, anti-inflammatory, and calming effects. 

References:  http://mall.coimbatore.com/bnh/ayurvedic/herbs/ashvaganda.html  (note spelling);   http://immunesupport.com/message/neurob12.htm

I was taking ashwagandha for a while, but decided it probably wasn’t helpful, and stopped taking it.

UPDATE:  In late January 06, I ran into some additional information which persuaded me to resume taking it. 

OOPS! (And you thought that technical word was uttered only by surgeons and civil engineers?)  11 Feb I ran into problems with rubber right leg and spastic right thumb, and went hunting for a convenient scapegoat.  Violating Johnson’s #1 rule of scapegoating “blame the guy who ain’t here”, I blamed Ashwagandha.  ….
Actually, I suspect the “cause” is failure to go mountain hiking, but meanwhile I’m taking too many damn pills.  Ashwagandha bites the dust again.

 GINKGO BILOBA

One of the chemicals in the group which is used for standardization (sorry don’t remember which) is believed to protect against glutamate toxicity.

I tried taking ginkgo several times, but each time I noticed an increased tendency to bruise and/or bleed, which is a known potential side effect of ginkgo.  So I have given up on it.  (I react to aspirin the same way.)

RHODIOLA ROSEA

Well-studied, and a standard pharmacopoeia medicine in several European countries and also often used in Chinese medicine.  It has a long history of use in traditional medicine wherever it grows.

Rhodiola is an “adaptogen” which is clinically shown to increase physical endurance, reduce symptoms of fatigue, relieve depression, and to improve brain function esp. memory in age-related memory loss.  In animal studies it helps to protect the organism from different kinds of stress-- heat, oxidants, heavy metals.  It is also shown to protect against hypoxic damage.

It has very few side effects.  It should not be taken by persons who are susceptible to manic episodes, and can produce anxiety or nervousness in some people at first.  In the latter case the side effects can be minimized by starting at a small dose and working up. 

Because of its stimulant effect, it may interfere with sleep, and in individuals so susceptible, the problem can be alleviated by not taking it late in the day.

The herb should be standardized for rosavins and salidrosides in an approximately 3:1 ratio, which is the ratio characteristic of known genuine rosea species.  Unstandardized product is often other species which have low levels of the rosavins which are believed to be more closely allied to the health benefits than are the salidrosides which occur in many species related and unrelated, most of which species have little or no history of medicinal use as a strengthening herb.

It doesn’t take much.  Typical preparations are extracts standardized to 3% rosavin,  dosage several hundred milligrams per day.

……I tried taking Rhodiola rosea several times, and each time I noticed an increase in spasticity.  So I gave up on it.  With some misgivings:  for all I know, the increased spasticity might have been the sign of a healing process, or may have been a coincidence.  I may try it again one of these days since it seems so promising.   

PIRACETAM

This is a synthetic “smart drug” chemically very similar to the amino acid pyroglutamate. The amino acid itself is poorly studied though there is some speculation that it might be helpful in improving memory in older subjects.  Piracetam on the other hand is a well-studied drug well known in Europe though not approved in the USA except as an orphan drug. 

Piracetam is a derivative of GABA; however there is no evidence that it works through the GABAergic system.  And despite its chemical similarity to glutamate, there is no evidence that it stimulates glutaminergic receptors to any great extent.  It acts primarily on acetylcholine receptors. 

Because an important part of its mode of action is related to acetylcholine, it should be accompanied by supplementation with phosphadityl choline, a primary ingredient in soy lecithin. 

Although interest in piracetam in the USA revolves primarily around its use as a “smart drug”, its potential importance in the treatment of ALS lies in its powerful protective effect against hypoxic damage and regenerative effect on cholinergic receptors. 

The stuff has virtually no known toxicity or contraindications.  However it has undesirable stimulant effects in a few people, and may potentiate some psychotropic drugs. 

Piracetam is unavailable in the US except by prescription at several pharmacies which specialize in oddball drugs.  US citizens can legally import it for their own use by mail, and it is available over the counter in Mexico.

The customary dose is several grams per day divided into several doses. Almost a staple in the diet… I’m leery of such heavy dosing of something which is not a nutrient.

……I tried to get it at a pharmacy in Juarez (Mexico) which caters to folks from El Paso, and they never heard of the stuff.   Given its chemical similarity to glutamate, I’d be reluctant to take it long-term without getting more information on its biochemistry.

GABA  

Inhibitory neurotransmitter, works on the other end of the glutamate seesaw.  It combines with ammonia as does glutamate, in both cases helping clean up ammonia which is neurotoxic.  Sedative, take before bedtime, typical dose 2-5 grams.  Increases HGH production.

In my reading so far, I do not find much interest in GABA in treating ALS.  Given how closely it works with glutamate, this is surprising. 

A simplistic view would be that an ALS patient would take GABA with the expectation of doing some good by counterbalancing excess glutamate.  However the problem is not glutamate per se in its normal role as a neurotransmitter, but glutamate neurotoxicity when the levels are too high.  I have not seen evidence in what I’ve read so far that GABA has any protective effect against glutamate toxicity.  Who knows, loading up on GABA could disturb a regulation mechanism resulting in increased levels of glutamate.

If GABA is of any use in the treatment of ALS, its benefit probably lies in its ability to stimulate HGH production, which may aid in nerve regeneration.

I recently read a research summary which reported that GABA tends to inhibit adult stem cells from maturing into nerve cells, and that this is probably a mechanism by which the central nervous system prevents cancer.  If a person were hoping for stem cells to become nerve cells, damn the risk of cancer, taking GABA would probably be a bad idea.

……In my opinion supplementing with GABA deserves further investigation.  My personal interest in GABA dropped when I started supplementing with taurine (which is GABA-ergic) and when I couldn’t find much enthusiasm for the stuff among other ALS patients who’ve done their own research.

CREATINE

Rejuvenates ATP during exercise, allowing increased duration of muscle activity without having to revert to the (anerobic) lactate cycle.  Popular among bodybuilders because it allows more exercise.   The body uses about 2 grams/day from its rather substantial stores; therefore normal supplementation if any should be in that range.  Bodybuilders and athletes typically take several times that amount.

From what I’ve read so far, I gather that creatine’s beneficial role is primarily in muscle tissue rather than in nerve tissue.  Since an ALS patient should not be exercising to the point of anaerobic (lactate) muscle fatigue anyway, it’s not obvious to me that creatine has a useful role to play in ALS. 

Note:  epidemiological studies show a higher than expected incidence of ALS patients who participated in varsity sports when younger.  This lends support to the theory that disturbed redox plays an important role in the development of the disease.  Countering this observation is an admission that the more “correlation shopping” you do, the more often you’ll get statistical correlations which are just dumb non-luck.   …..I intuit that the correlation with varsity sports participation is cause-and-effect related, but I’d hate to have to defend that opinion.

If I get to the point where I’m doing regular vigorous exercise (hiking in the mountains, etc.) I may do some creatine supplementation.

S.O.D. (Superoxide dismutase, bovine liver origin)

Since a defect in the gene that synthesizes  SOD-1 is responsible for “familial” ALS, the idea of supplementing with SOD may seem attractive.  However, supplementing with SOD doesn’t put the right stuff in the right place at the right time, and anyway the culprit in familial ALS is not lack of SOD, but the destructive behavior that the mutant SOD that the defective gene encodes for. 

OTHER ANTIOXIDANTS

The catechins in green tea, and the proanthocyanins in grapeseed extract, are considered to be particularly effective in protecting the nervous system from oxidative damage.  The broader health benefits of green tea are widely documented.      UPDATE:  In mid-January my employer contracted with a beverage service to maintain a percolator and a supply of hermetically sealed perkable beverages including a particular vegetable-tasting green tea.  I’ve decided to do a cup of tea a day in addition to 2-3 cups of coffee a day.  In the past I have been leery of the oxalates in tea because urinary tract stones run in my family.

GABAPENTIN

A few people are using it as part of a therapeutic regime for ALS.  I took a quick glance and there didn’t seem to be much reason to expect it to help, and too many potentially serious side effects.  A couple years ago a psychiatrist prescribed it to my daughter, and she didn’t like the side effects, so this was not completely new turf for me.  All that having been said, I may take a second look at it one of these days.

ALLOPURINOL

A xanthine oxidase inhibitor usually prescribed for gout, to reduce the metabolic conversion of purines to uric acid.   A few people are taking it as part of ALS therapy, as I recall, to protect hypoxanthine which as I recall has something to do with the glutamate synthesis cycle.  [I’ll get this story straighter next time I come across my file material on this subject.]

Allopurinol has potentially serious side effects, and the arguments in favor of taking it seem rather weak.  I could get it prescribed on-label for gout if I wanted, but I don’t perceive a favorable ratio of potential benefit to potential risk.

VINPOCETINE 

Said to be neuroprotective and to improve brain function through better vascular flow.  Some people regard it as a “smart drug” like Piracetam.   Decided against it, mostly because of its tendency to increase the risk of bleeding.    ….UPDATE:  did a little more research.  It is evidently a calcium channel blocker, and the risk of bleeding is evidently low other than for heart patients which are taking warfarin (Coumadin), a “blood thinner”.

TRIMETHYLGLYCINE

Methyl donor and (as I recall) a component precursor of glutathione (or was it GABA?)  When I find a source I will probably start taking it.  More info on next major rewrite.

UPDATE:  24 Feb 06 I began taking TMG 750 mg.

CODONOPSIS

Most practitioners of Chinese traditional medicine use this botanical in treating ALS, which in the Chinese system is lumped together under “flaccidity syndromes”.   It is a strengthening and stimulant adaptogen.  …..I seem to be getting good results without it and I’m leery of things that might be excitotoxic.

LITHIUM

An article was recently published indicating that lithium, a mainstay treatment in bipolar (manic-depressive) disorder, increases the concentration of several biochemicals which are associated with cell survival, and decreases the concentration of several biochemicals associated with neuron death processes. [ref: www.als.net/articles/articleDetail.asp?articleId=4417]

The FDA-approved lithium compound for treatment of bipolar disorder is lithium carbonate, an ordinary industrial chemical.  Because it is defined as a drug, industrial chemical supply houses won’t sell the stuff to just anybody no questions asked.  Lithium is not an innocuous drug when used at therapeutic levels, and I cringe to think what disasters would take place if the stuff was available unrestricted.

That having been said, there are ways to get lithium if you’re interested.  First, there’s online ordering from foreign suppliers.  Second, there’s Mexican pharmacies (easy for me to say, I live within walking distance of the Zaragoza border crossing.)  Third, I have occasionally seen lithium chelate formulations in natural food/supplements/herbs stores.  The FDA-approved drug is specifically lithium carbonate, so the chelates (even though synthetic) evidently fly under the radar.

In my opinion a person should not take lithium supplements without first having a clear understanding of the risks and how those risks relate to dosage. 

Lithium is “on the back burner” for me because I already have therapies that are working well, and doubt that adding lithium would confer additional improvement.  However if I’d known about lithium for possible off-label ALS therapy in July 05 I might well have put lithium on my list of pills.

MINOCYCLINE

An antibiotic which also has anti-inflammatory properties, presently the subject of quite a bit of funded ALS research.  Has a number of potentially serious side effects, particularly relating to the fact it’s an antibiotic.  To my knowledge no attempt has been made to show it is more effective in treating ALS than relatively safe anti-inflammatories such as turmeric extract or ibuprofen.  Therefore I regard evidence in favor of Minocycline’s efficacy for treating ALS as evidence against Minocycline in favor of the over-the-counter stuff.

UPDATE 26 Feb 06:  read some info indicating that the anti-inflammatory mechanism of Minocycline is different from that of NSAIDS.

CITICOLINE

This stuff sounds so promising, I’m surprised I never ran into a reference until today (15 March 06).  Helps regenerate neuron cell membranes, regulates CA++/glutamate transport.  In rats it exhibits a strong neuroprotective effect in ischemic damage, which is strongly correlated with its glutamate regulation activity.  This discovery led to clinical trials in human stroke victims, which however turned out inconclusive, I suspect because the stuff is natural and cannot be patented….  if you catch my drift.  The more I research clinical trials, the more it looks to me like success or failure is determined by the profitability of the substance being tested.  I predict that a toxic synthetic analogue to citicoline will appear with the next several years which will “solve” the “problems” of natural citicoline. 

Supposing for the moment that citicoline confers no dramatic improvement in stroke survivability, that may have little to do with its value (or lack of same) in treatment of ALS.

I hope to learn more about citicoline, both for its potential for treating disease, and for what research on the stuff reveals about how the nervous system works and doesn’t work.

HYDRALAZINE

A vasodilator normally prescribed for the purpose of lowering blood pressure.

The Journal of Neuroscience Research (Monday 17 April 06) published studies by researchers at Purdue indicating that hydralazine is an antidote for the toxin acrolein which is produced when nerve cells are injured.  It works because acrolein is an aldehyde and hydralazine combines with aldehyde, the resulting molecule then being excreted.

They report dramatic protection from nerve cell damage and recovery of damaged cells in in vitro experiments.  They are now doing animal experiments.

They consider hydralazine problematic from the standpoint of its blood-pressure lowering effects, and are hoping to develop analogues with fewer side effects such as lowering of blood pressure.

Hydralazine carries with it the risk of developing drug-induced lupus (an autoimmune disease), and vitamin B6 deficiency.

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