In order of relevance
MEDICATIONS & SUPPLEMENTS
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Where possible, effects of the following substances on humans have been quoted although some of the following data have been gathered from animal studies only.
It is generally accepted that medical laboratory studies using animal models have eventually been proven to apply to humans and that exceptions to this rule are relatively rare.
Although laboratory animals and humans live in very different environments, the results observed in most animal tests are consistent with ultimate epidemiological findings in humans.
See my Useful Links page for direct links from this site to many other pharmaceutical, neurological and ALS/MND relevant websites.
AGRIN Regeneron Pharmaceuticals Inc. (REGN) scientists have identified the naturally occurring ligand, called agrin, that activates a muscle-specific growth factor receptor.
Scientists have discovered that activation of a muscle-specific growth factor receptor, which the scientists previously cloned and named MuSK, is responsible for triggering all aspects of neuromuscular junction formation.The neuromuscular junction, located at the nerve tip where it contacts the muscle surface, is the connection point at which communications between nerve and muscle take place. Research will be published in two articles in the scientific journal ''Cell.''
Human agrin has now been cloned and work is underway to develop a manufactured version of agrin. The discovery raises the possibility of using drugs to stimulate the MuSK receptor, which would then activate muscle growth.
Regeneron said this could help maintain muscles that are at risk of atrophy and degeneration from muscular dystrophies, motor neuron disease (ALS) or broken bones that are in casts.
Scientists have unravelled the mysteries of one of life's most basic pieces of wiring the connection between nerves and muscles. Every time someone twitches a toe or wiggles a finger, the nerves communicate with the muscles. But just how the body constructs the biological machinery that makes this happen, usually flawlessly, has been unclear.
"This is the most intensively studied communications relay point in the human body," said Dr. George Yancopoulos. "Understanding it is a Holy Grail."
The discovery may offer clues about how cell-to-cell communication goes on inside the brain, and it could also lead to new treatments for nerve injuries and a variety of diseases. The research may yield a remedy for muscle atrophy that occurs when people break bones or become bedridden.
Nerve cells talk to each other, as well as give orders to muscles, by sending messages across gaps called synapses. These synapses are formed where nerve meets muscle, a point called the neuromuscular junction. Nerves and muscles create chemically intricate synapses in just the right places.
The secret seems to be two proteins one called agrin and another known as muscle-specific-receptor kinase, or MuSK. Sanes and colleagues looked at the role of agrin, while Yancopoulos and others from Regeneron Pharmaceuticals Inc. of Tarrytown, N.Y. examined agrin's interaction with MuSK. Their reports were published in the journal "Cell".
Both worked with mice that were missing the genes that produce agrin or MuSK. They found that both proteins are necessary during embryonic development to make working connections between nerves and muscles.
A major problem in treating nerve injuries is getting the nerves to grow back and work properly. Dr. Zack W. Hall said "The problem with regeneration is trying to recreate those embryonic conditions in which they were formed in the first place. The more we know about this, the better we can encourage that regeneration,".
During development, it now appears that nerve cells grow toward muscles and then release agrin. On the muscle side of the gap, the agrin is received by MuSK, which works in combination with another protein called muscle-associated specificity component, or MASC. This triggers a chain reaction that eventually results in changes in both the nerve and the muscle that add up to a working synapse.
Nerve cells talk to the muscle cells by sending a chemical code in the form of the neurotransmitter acetylcholine. Agrin is the first step. It signals the muscle to pull together the chemicals it needs to construct acetylcholine receptors so it can receive these messages.
Regeneron scientists say agrin works like a muscle growth hormone, and it might be used as a medicine for some muscle conditions. The Regeneron researchers have produced the human form of agrin and are testing whether it can halt muscle breakdown.
ALLOPURINOL Researchers measured neuronal death in rat cortical cell cultures exposed to cerebro-spinal fluid (CSF) from ALS patients. CSF was quite neurotoxic, but Vitamin E and allopurinol separately protected cells and in combination "completely prevented the neurotoxicity of ALS CSF." The authors conclude,
"A combination of allopurinol and vitamin E may be useful in ALS therapy." Allopurinol is a prescription drug, primarily used for the treatment of gout. If an ALS patient wants to try this therapy, a doctor must prescribe allopurinol.
Dr. Stanley Appel of the Baylor ALS/MDA Clinic in Houston prescribed allopurinol for his ALS patients for several years. The dosage is 200mg/day to start, working up to 600mg/day.
"antioxidant drugs block in vitro the neurotoxicity of CSF from Patients with amyotrophic lateral sclerosis" AU: Terro, F. et al SO: *Neuro Report*, v7, n12, pp1970-72, Aug 12, 1996
Note that Vitamin E has already been shown to delay onset of ALS-like symptoms in the ALS mice. See antioxidants
[n.b. I used Allopurinol in the first stage of My Clinical Study but discontinued Allopurinol because of its potential to impair liver function. For many years I have successfully used a combination of other antioxidants and assistive supplements. SS]
ALOE VERA Aloe gel contains water and 75 other substances. Applied to wounds, it is a mild anaesthetic and also antibacterial and antifungal. It increases blood flow to wounded areas and stimulates the skin cells responsible for wound healing.
Researchers concluded that aloe is able to regulate gastrointestinal pH while improving gastrointestinal motility and reducing populations of certain micro-organisms, including yeast.
Other studies show that aloe vera juice helps detoxify the bowel, neutralize stomach acidity, and relieve constipation and gastric ulcers. Aloe Vera contains amino acids and enzymes that promote cell growth and maintain cell wall integrity and can improve the mucosal lining of the intestines and assist digestion.
An extract of mannose, one of the sugars in aloe, can inhibit HIV-1 (the virus associated with AIDS). In a 1991 study in Molecular Biotherapy, HIV-1 cells were treated in vitro with a mannose extract, which slowed virus reproduction by as much as 30%, reduced viral load, suppressed the spread of the virus from infected cells, and increased the viability of infected cells.
Twenty nine HIV patients were given pure aloe vera juice (5 ounces, 4 x daily) along with essential fatty acid, vitamin, mineral and amino acid supplements. After 90 days they had fewer opportunistic infections, thrush, fatigue, and diarrhoea, plus better immune system response and improved overall quality of health. In 25% of the patients, aloe inhibited the virus's ability to reproduce.
Researchers found that the mannose extract and perhaps other compounds stimulate the body's immune system, particularly T4 helper cells, which activate the immune response to infection.
Aloe can also inhibit the autoimmune reaction associated with certain forms of arthritis, in which the body attacks its own tissues. One organic acid in aloe reduced arthritic inflammation by 79.7% and suppressed the autoimmune response by 42.4% in mice. Another aloe compound (anthraquinone) reduced inflammation by 67.3% but had no effect on the autoimmune response.
Researchers writing in Cancer Immunology and Immunotherapy found that lectin from aloe activated killer T cells, white blood cells that bind to invading cells and destroy them, to attack tumour cells injected with lectin.
Aloe activates macrophages causing the release of immune-activating substances such as interferons, interleukines, and tumour necrosis factor. In addition, aloe promotes the growth of healthy, non-cancerous cells.
AMGEN Amgen and Guilford Pharmaceuticals Inc. have announced world-wide rights to Amgen for Guilfords FKBO-neuroimmunophilin ligands, a class of small molecule neurotrophic agents that may represent a new approach in the treatment of neurodegenerative disorders. They are orally active neurotrophic agents developed to promote nerve regeneration and repair. Their polymer biopharmaceutical company is looking into the treatment of neurological diseases, including ALS/MND.
The compounds are claimed to have activity comparable to NGF, BDNF and other neurotrophic protein factors and are active following oral administration. They cross the blood/brain barrier even in small doses. They specifically target damaged nerve cells and bypass healthy cells, so there are few side effects. These have only been tested in cultures and animal models to date.
AMINO ACIDS There are contradictory research reports on the use of certain amino acids in the treatment of ALS/MND. I present both cases here for your information.
Research from the Mt. Sinai School of Medicine published in The Lancet in 1988 revealed that ALS patients whose diets were supplemented with an amino acid preparation containing high levels of the amino acids L-leucine, L-isoleucine, and L-valine demonstrated significant benefit in terms of maintaining the strength of their arms and legs and ability to continue walking.
These supplements were chosen because it was hypothesised that some patients with ALS had a deficiency of a certain enzyme which could be stimulated with these particular amino acid. In the study, subjects consumed three grams of L-leucine, two grams of L-isoleucine, and 1.6 grams of L-valine four times daily between meals.
The above information about L-Leucine for ALS has been overtaken by a more recent clinical trial. See the following article: TI: "A controlled trial of amino acid therapy in amyotrophic lateral sclerosis" AU: Tandan, R., et al. JO: *Neurology* 1996;47:1220-26. These trials suggest the above amino acid combination may be of no use or even harmful for people with ALS/MND. The account below (frustratingly) contradicts this:
There is some evidence suggesting that L-Leucine / L-Isoleucine / L-Valine might be able to help restore muscle mass in those who have liver disease, those who have undergone surgery and those who have suffered injury or other trauma, but no one has shown that they are effective in this regard in healthy individuals.
On the other hand, the branched-chain amino acids appear to be quite useful in treating and, in some cases, even reversing hepatic encephalopathy, a form of liver damage that is a frequent feature of alcoholism.
The branched-chain amino acids help curb muscle wasting in individuals with this disease and, through their actions on brain neurotransmitters, help prevent a number of the adverse neurologic effects of chronic liver disease. [Author's note: I am convinced there is a link between liver function and the successful metabolisation of possibly useful medications, antioxidants, etc. that may slow the progress of ALS/MND]
Other reports suggest possible additional roles for the branched-chain amino acids in the treatment of some neurologic disorders. A recent study suggests that leucine, isoleucine and valine may be helpful in ALS/MND.
This pilot study involved nine ALS patients, eight of whom reportedly benefited from supplementation with these branched- chain amino acids, to the extent that, over the one-year period of the study, they maintained muscle strength and the ability to walk.
By contrast, five of nine control subjects with ALS, all of whom received placebos instead of the amino acids, lost their ability to walk within the one-year period. Those receiving the amino acids got (daily) 12 grams of leucine, 8 grams of isoleucine and 6.4 grams of valine. These were divided into four doses taken between meals.
The researchers in this study, funded by the National Institutes of Health, decided to try the branched-chain amino acids in part because of leucine's and isoleucine's ability to promote the enzymatic break-down of glutamate, another amino acid, which appears to be overactive and possibly toxic in the brains of PALS.
Valine was added to the regimen, as well, because levels of this amino acid are severely reduced in the blood and cerebrospinal fluid of ALS patients. No significant side effects were noted. Owing to the importance of these findings, a much more ambitious three-year follow-up study is now underway involving one hundred ALS patients. Submitted, David Grimshaw
L-ARGININE is used to treat a variety of ailments including heart disease, immune function, adiposity-generated diseases, genetic growth deficiencies, high blood pressure, sexual dysfunction and human aging.
The efficacy of L-arginine as a therapeutic agent has been validated by thousands of clinical studies. It is a precursor for the essential synthesis of Nitric Oxide (NO) and stimulates the release of anti-aging growth hormone.
L-Arginine improves immune function, reduces healing time of injuries, reduces risk of heart disease, increases muscle mass, reduces adipose tissue body fat, helps improve insulin sensitivity and decreases blood pressure. It also alleviates male infertility, improving sperm production and motility.
ARTHRITIS MEDICATIONS This note is included as many PALS mention that they have arthritic pain or have suffered injury that has lead to arthritic changes. Glucosamine and Chondroitin in combination can rebuild the damaged or deficient cartilage that usually leads to arthritic pain.
Numerous studies have been done that demonstrated the efficacy of Glucosamine and Chondroitin supplementation. These combined supplements are now generally available but the quality may vary. Some of the cheaper products do not contain sufficient amounts to be of therapeutic value.
Liquid Glucosamine and Chondroitin is reported to work best. (At the time of writing it is reported that arthritic changes to the spine are the least likely to benefit from these supplements but nearly all other arthritic joint pain was relieved in a large study group). Many practitioners report good results using Glucosamine alone.
ARTICHOKE Globe Artichoke helps stimulate bile flow from the gall bladder and assists the liver to digest fats thereby helping to maintain healthy cholesterol and triglyceride levels. See the importance of Liver Function
ASPIRIN Randall Bosin posted a note reporting on an article in the Washington Post that cited research in Italy demonstrating that aspirin could reduce excess glutamate in rat brains. (Neuroprotection by Aspirin and Sodium Salicylate Through Blockade of NF-kB Activation) Journal: *Science* vol 274, pp. 1383-1385, Nov 22, 1996, Author: Grilli, M., et al.
Some quotes from the article: "We tested the possibility that the anti-inflammatory drugs aspirin and sodium salicylate, because of their wide spectrum of pharmacological activities and multiple sites of action, may confer neuroprotective properties... We used primary cultures of rat cerebellar granule cells, where a brief pulse of glutamate, through activation of the N-methyl-D-aspartate (NMDA) type of glutamate receptor, induces cell death...
The range of concentrations for both drugs was correlated with the amounts in plasma (1 to 3mM) for optimal anti-inflammatory effects in patients with rheumatic diseases...
A concentration dependent protection against glutamate-induced neurotoxicity was observed in the presence of both drugs. For aspirin, the calculated median effective concentration was 1.7mM, with maximal effect at 3mM...
It was likely that salicylates were acting on intracellular molecular targets further downstream of glutamate receptor activation, a property that makes them distinguishable from most neuroprotective drugs...
At concentrations compatible with amounts in plasma during treatment of chronic inflammatory states, Salicylates prevented glutamate-induced Neurotoxicity." This research refers to the action of aspirin on glutamate- induced neurotoxicity, not about its anti-inflammatory activity.
Enteric-coated aspirin is a powerful drug and needs close medical supervision. Talk to your physician about its use.
In the Sonntags Zeitung (Sunday Newspaper, Zurich) 30 August 1998 an article on new aspirin (in the newspaper called "super-aspirin") claims the new aspirin should be much better for the stomach and the kidneys. It reduces the effect of the COX-2 (cyclooxygenase-2) but not COX-1, which helps to protect the stomach and the kidneys. The super-aspirin has undergone clinical tests by Searle (brand name Celebra), Merck (brand name Vioxx), Johnson & Johnson, Bristol- Myers Squibb and Glaxo.
Low dose aspirin may also inhibit nitric oxide synthase damage in the brain and central nervous system.
People who are immobilised for long periods may tend to develop blood clots in their legs which can lead to heart attacks and strokes. Discuss with your doctor the advisability of taking low dose aspirin to help prevent blood clots.
ASTRAGALUS (Astragalus membranaceus) Known as Huang Qui in China where it has been used for 2000 years. It has been used to raise vitality, stop debilitating sweating, promote healing and tissue regeneration.
The raw root has been found to aid the body's resistance to infection, promote diuresis, reduce swelling, promote suppuration (drain pus) regenerate tissue, promote muscle growth and reduce chronic fatigue.
Cured root is said to replenish the vital energy and is used as a tonic to treat general weakness, fatigue and lack of appetite. It contains more than 20 trace elements including magnesium, iron, manganese, zinc, copper, rubidium, molybdenum and chromium.
In animal studies, Astragalus was shown to enhance phagocytic activity and increase super-oxide production and acid phosphatase activity of peritoneal macrophages. When given to humans oral doses of the dried extract increased levels of antibodies such as lgE and IgM.
Increased levels of lgA and IgG in nasal secretions were shown. Oral doses of Astragalus increased serum levels and conversion percentage of lymphocytes when given to mice. It exerts an antiviral action, most likely due to increased immunity and the enhancement of interferon production.
Studies have shown protective effects of Astragalus with para-influenza virus type 1 and Coxsackie B virus infection of myocardial cells in vitro and vivo after injection. In vitro studies have confirmed the herb has antimicrobial effects against Shingella dysenteriae, Streptococcus haemolyticus, Diploccus pneumonia and Staphylococcus aureus.
Astragalus is said to be adaptogenic, immune stimulating, tonic in nature, diuretic and cardiotonic. It is useful for regulating the immune system, increasing energy, reducing toxicity in the liver, lowering blood pressure, dilating blood vessels and increasing the endurance of the heart. It has also been found to increase urine flow, aid in recovery from bladder infection and help to neutralise fevers and improve digestion.
Polysaccharides in astragalus, especially the polysaccharide fraction F3, show considerable immune enhancing activity in vitro. They have been found to potentiate the immune mediated anti-tumour activity of interleukin-2 in vitro, improve the response of T-lymphocytes from normal subjects and cancer patients in vitro, enhance the natural killer cells activity of normal subjects and potentiate monocyte activity.
Triterpenoid saponins such as Astragalosides 1 to VIII, acetyl astragalosides and astragenol have been identified. The root contains flavonoids, isoflavonoids, sterols, a volatile oil and amino acids including GABA and 1-canavanine. Clinical studies confirmed the immune enhancing activity of the herb in vivo.
The pharmacological properties of Astragalus are varied and include immunopotentiating effects, anti-bacterial and antiviral properties, the ability to promote nucleic acid synthesis in the liver and spleen, hepatoprotective, anti-inflammatory activity, cardiovascular tonic effects such as hypotensive and vasodilatory action plus a possible blood glucose balancing action. The herb has also been found to increase superoxide dismutase activity thus acting as a powerful antioxidant.
Experiments show Astragalus to be liver protective by preventing liver glycogen reduction caused by carbon tetrachloride exposure. In conjunction with Silybum marianum (St Mary's Thistle) Astragalus, with its antiviral and liver protective action, may help in the treatment of Hepatitis C.
The herb is useful in the treatment of kidney disease, having the ability to reduce urinary protein in chronic and acute nephritis. These effects appear to be mainly due to the saponins and polysaccharides in the herb.
Clinical studies have confirmed the herb's efficacy. Patients with low white blood cell counts responded to treatment with Astragalus, maintaining 4000 cells per mL while on the preparation. Prophylactic effect against the common cold was shown for oral doses and nasal sprays and there was a decreased incidence and shortened duration of infection.
Based on studies and clinical trials, astragalus has a number of uses in treating or prevention of: infection and impaired immunity, chronic bacterial or viral infections, Chronic Fatigue Syndrome, chronic and autoimmune diseases, especially nephritis. As support for congestive heart failure, peptic ulcers, high blood pressure and the common cold. As support, in conjunction with Korean Ginseng, for chemotherapy and radiation therapy.
Toxicity of astragalus root is very low with no side effects recorded in animal studies. Doses of 12 x 400mg capsules for several months have proven to beneficial in treating some chronic illnesses such as Epstein Barr Virus and chronic fatigue.
BACOPA (BRAHMI) Bacopa monniera (L.) Pennell Scrophulariacea. Synonyms: Herpestis monniera (L.) H.B.K. Monniera cuneifolia Mich. Used in Indian ayurvedic medicine for centuries to "improve blood circulation to the head" (see also Ginkgo). Affects the brain and nervous system, strengthening the nerves and encouraging the smooth flow of energy along the nerves to and from the brain. Improves coordination. Constituents: Alkaloids, brahmine, and herpestine, D-mannitol and a saponin.
A brain tonic that improves memory and learning. Category 3 and 1c nervine, imparting relaxation and restitution of balance.
Bacopa effects learning and memory retention and improves gross motor coordination. It doesn't suppress motor efficiency.
Useful for treating nervous deficit due to injury and stroke. Good as a general nerve tonic in nervous breakdown and fatigue related conditions.
Effective in the patient experiencing decreased strength as a result nerve damage.
Preparations & Dosage: 1:2 Tincture of the leaf in 25% alcohol. Dose 35-90mL/Wk.
BU NAO GAO Chinese herbs that are used in combination to treat neurodegenerative illnesses have been reported to help to some patients ALS/MND. Dose rates and the addition of other herbs and treatments may be necessary and can only be established by an expert Chinese herbalist.
CANNABIS The use of cannabis for ALS/MND patients has been called for by researchers in Washington (2010). They say that cannabis is a powerful antioxidative and anti-inflammatory agent and has neuroprotective effects. It also has properties applicable to symptom management of ALS/MND, including analgesia, muscle relaxation, bronchodilation, saliva reduction, appetite stimulation and sleep induction.
CARNITINE Acetyl-L-Carnitine Some benefits of using supplementary Acetyl-L-Carnitine: Improves nerve conduction velocity. Retards decline of Nerve Growth Factor (NGF) Receptors. Stimulates and maintains growth of neurones within the brain both independently of NGF and by preserving NGF.
Inhibits degeneration of neurones. Reduces spasticity. Increases responsiveness of neurotrophic factors. Reduces harmful, stress induced, cortisol levels. Inhibits Xanthene Oxidase (a neurone damaging free radical).
Now used to treat effects of ageing and age related disorders such as alzheimer's disease. Suggested dosage from 1500 to 3000mg daily. [Carnitine is available as the prescription medicine "Carnitor" but only Acetyl-L-Carnitine is seems to be effective.
CAT'S CLAW Uncaria tomentosa Primarily used to boost immune function and documented to increase phagocytosis. The chemical composition of cat's claw includes 17 different alkaloids, quinovic acid glycosides, tannins, flavonoids, sterol fractions and other compounds.
Cat's claw contains a group of oxindole alkaloids with documented biological activities. Another form of Cat's Claw Uncaria guianensis is sometimes substituted for or combined with U tomentosa and there is some debate as to whether this is good, bad or makes little difference.
Some of the more expensive proprietary brands of cat's claw may actually have lower levels of useful compounds so it is important to purchase this herb from a supplier that can verify the quality of the source material.
CELEBREX [From "Cyclooxygenase-2 Inhibitor Protective in ALS Model". Annals of Neurology 2000;48:792-795] Selective cyclooxygenase-2 (COX-2) inhibition protects against motor neuron loss in an in vitro model of amyotrophic lateral sclerosis (ALS).
Glutamate accumulation in the synaptic space produces neurotoxic effects and astrocytes can release glutamate in response to prostaglandins and other triggers. By inhibiting astrocytic glutamate release, COX-2 inhibitors might play a therapeutic role in ALS.
Doctors Daniel Drachman and Jeffrey Rothstein tested the effects of a selective COX-2 inhibitor, SC236, in THA-treated spinal cord cultures. THA inhibits the astroglial transport of glutamate and thereby induces gradual loss of motor neurons as seen in ALS. Highly significant loss of motor neurons in untreated cultures occurred within 3 to 5 weeks after the addition of THA.
In contrast, SC236 potently and significantly protected against motor neuron damage at all concentrations tested. Researchers observed that, in their model system, COX-2 inhibition had a highly significant protective effect on motor neurons. COX-2 inhibition may have therapeutic effects in ALS by altering the cascade of pathogenic processes that otherwise cause relentless progression of motor neuron damage.
Doses used in clinical trials were 800mg daily. The usual maximum dose is 400mg. Some doctors prescribe Celebrex for ALS/MND patients.
CHAPARRAL (Larrea v. sp.) Actions : Antioxidant, antirheumatic, analgesic, antineoplastic, diuretic, immune stimulant.
For centuries, Native Americans have been using chaparral leaves and stems to treat a wide variety of ailments, including cancer, venereal disease, arthritis, rheumatism, tuberculosis, colds, stomach disorders and skin infections to name a few.
In folk medicine, chaparral has been used for leukemia and many different types of cancers. The plant contains immune stimulating polysaccharides and a key ingredient nor-dihydroguaiaretic acid (NGDA), which has been shown to have powerful antitumor properties.
Chaparral also has been shown to have good antirheumatic properties giving it a role in the treatment of rheumatoid arhritis. This remarkable plant has many benefits. For more information
Coenzyme-Q10 is an antioxidant, combating oxidation-reduction reactions that can damage cell membranes and other structures. Its activity is part of the chain of biochemical events that take place inside the cells' mitochondria, its energy-producing units.
Oral coenzyme Q10 significantly prolonged the lives of mice with mutated SOD1 genes and a disorder that closely resembles human ALS. Coenzyme Q10, even when given by mouth, was found to penetrate into brain tissue in general and into the mitochondria of brain cells.
Antioxidant effects and preservation of mitochondrial function may contribute to neuroprotection. Coenzyme Q10 may be more effective than vitamin E in the treatment of neurodegenerative diseases.
COLAMIN PHOSPATIS SALTS Dr. Hans A. Nieper of Germany has recommended taking Colamin Phospatis salts, EAP to build up the calcium around the nerve endings effected by ALS/MND. Contact the Brewer Science Library in Richland Center, WI. 53581, phone 608-647-6513 and ask for Hans Nieper’s ALS treatment. You can also contact Dr. Nieper's clinic in Germany. The pharmacy at the clinic has an English speaker, Claus, at 011-49-511-772039.
(Please note that there has been both criticism of and praise for this treatment from various sources. Take care to research this option further before proceeding).
COLLOIDAL SILVER It has been observed that colloidal silver can kill bacterial and viral infections and may be particularly useful in treating chronic infections that have not responded to conventional medications. Numerous studies regarding its use and efficacy have been published.
For further information see PurestColloids.com
COLOSTRUM (Bovine Colostrum) Contains immunoglobulins, growth factors, antibodies, vitamins, minerals, enzymes, amino acids, and other substances designed to "prime" the body to face invasion by damaging micro-organisms and environmental toxins. Ageing, illness and death occur with the loss of immune and growth factors in our bodies. Many published reports suggest that these can possibly be replaced in the human body with bovine colostrum.
As we age, our bodies gradually produce less of the immune and growth factors that help our bodies fight disease and heal damaged tissues. Research has shown that Colostrum has the demonstrated ability to kill bacteria and viruses, stimulate tissue repair (particularly the bowel lining), stimulate fat utilization for fuel and optimize cellular reproduction (anti-ageing).
Growth factors IgF-1 and TgF A&B and nucleotides from bovine colostrum are practically identical to human colostrum in composition. These growth factors stimulate normal growth and help regenerate and accelerate the repair of aged or injured muscle, skin collagen, bone, cartilage and nerve tissues. They also stimulate the body to burn fat for fuel instead of the body's own muscle tissue when fasting or dieting and help build lean muscle. IGF-1 is one of the few substances that can stimulate the repair and growth of DNA and RNA. For more detailed information on colostrum see
CREATINE Disappointing results of a creatine clinical trials in 2003 were reinforced with the results of a further trial presented in Milan. "At 5g per day we could not determine a benefit of creatine in people with MND," concluded Dr Jeremy Shefner from New York, USA representing the trial consortium.
Creatine monohydrate is popular as a muscle-building supplement among athletes has helped in treating ALS/MND in animal studies. Researchers at Harvard Medical School and Cornell University Medical College found that mice bred to develop ALS symptoms fed a diet high in creatine had the same amount of healthy muscle-controlling nerve cells as the mice in a control group.
Creatine is a natural body substance involved in the cellular transport of energy in the body. Animal models of ALS/MND involve a genetic mutation in mitochondrial genes, which regulate the energy of cells, and it is believed that similar defects occur in humans.
Animals on the creatine supplements showed complete protection up to four months, when the disease would normally have begun to take hold. It has been claimed that Creatine may be more useful for treating ALS/MND than Rilutek/Riluzole.
Dr Lynn Myers has written a number of articles on Creatine for lay people, including "Creatine answers for PALS", and has started a free e-mail newsletter on nutritional and medical health issues that may be of interest.
A suggested dose of Creatine is 10grams daily for 5 days, then 5grams daily for 5 days, then 1gram (1000mg) daily to maintain. [Note that this is a suggestion only for healthy, active people and that research is still underway to verify appropriate doses for PALS]
Creatine improves mitochondrial function and has been shown to be neuroprotective in animal models of ALS and Huntington's disease. This is from - Linking Patients to Medical Research: Study Details Clinical Trials of Creatine in Amyotrophic Lateral Sclerosis recruiting patients in 2001. National Center for Research Resources (NCRR) Dr. Rup Tandan, MD, FRCP. Telephone: United States 1-802-656-8880
DHEA Dehydro-epiandrosterone is being used to treat ALS/MND. A naturally occurring steroid produced in the adrenal glands, it typically reaches its peak level at approximately age 20 and then declines progressively with age. By age 80 blood levels of DHEA are reduced to only about 5 percent of what they were at age 20. Dr. Alan Gaby, writing in Holistic Medicine, reveals that DHEA may be of value in preventing and treating a wide range of medical problems.
The mechanism by which DHEA exerts its influence is not clear, but it has been described as an "anti-aging hormone" and has been tried and found effective for a wide variety of ailments.
In a recent issue of The Townsend Letter for Doctors, Dr. Gaby reported the case of a 78-year-old man with a six-year history of progressive neurologic deterioration as a consequence of ALS. His serum DHEA level was found to be in the low normal range.
The patient was started on oral supplemental DHEA and over a period of two months, there was a dramatic improvement in his swallowing ability, his appetite, and his general well being.
Has has also written that "Recently a 68-year-old woman suffering from ALS came under my care. Her condition had deteriorated to the extent that her speech and swallowing were moderately affected and she was wheelchair bound. I began treatment with 50mg. of DHEA by mouth every other day. At her first follow-up visit one month after starting DHEA she was able to stand and take several steps for the first time in six months.
As of this writing, her situation has not significantly deteriorated, although I have not noted any continued improvement. She is presently taking 50 mg. of DHEA each day."
Etienne-Emile Baulieu, French researcher at the College De France, has been giving elderly people low doses of synthetic DHEA as an anti-aging agent. The mineral chromium promotes an increase in DHEA.
An organic chromium supplement of 200 micrograms daily can help reduce accelerated ageing. (nb oxidation of motor neurones is essentially a form of accelerated ageing) The supplement should ideally be a "biologically active" form of chromium, such as chromium nicotinate, for easier absorption and utilization by your body. If the chromium supplement is inorganic, your body must first convert it to an active form before it can be utilised.
DHEA is reputedly safe and inexpensive (although it has been suggested it should not be taken by men with prostate problems). It is "restricted" in Australia but available from L & H Vitamins (see Useful Links page). In the USA, DHEA is available at WalMart Pharmacies.
DIFLUCAN (Fluconazole) It has been proposed that Candidiasis and other fungal/yeast infections may trigger or even cause some types of neurological illness. Diflucan (Pfizer Pharmaceutical) is used specifically to treat cryptococcal meningitis.
This powerful systemic fungicide may assist in treating ALS/MND if "leaky gut syndrome" or fungal infections are indeed involved in the progression of some forms of this illness. There has been no major study to verify that Diflucan will definitely be of benefit but it may be worth discussing its possible use to treat ALS/MND with your doctor.
DMAE DMAE is di-methyl amino ethanol which is converted to acetylcholine (an important neurotransmitter) in the liver to choline when it crosses the blood/brain barrier. It acts as a neurotransmitter and could possibly be helpful in synapse signal enhancement and is known to stabilise cell membranes.
DMAE can elevate mood, provide a feeling of mild stimulation, increase cognitive functions and possibly extend lifespan. Choline is important for maintaining cell membranes in the brain and central nervous system - cell membrane degradation is believed to be one of the prime mechanisms of ageing. Inside cells, choline is converted to phosphatidylcholine and used to build and repair cells membranes.
When DMAE use is discontinued, no depression or let-down occurs. Dosage - 100 mg of DMAE bitartrate (may be co-factored with Inositol, B-5, and other B-vitamins).
ECHINACEA This herb Echinacea purpurea has been used for centuries to treat colds, influenza, fevers and the like. It has been shown to inhibit many viral infections. As certain research suggests that ALS/MND may be triggered by a virus, [my own research recorded a worsening of ALS/MND symptoms when my immune system was stressed by influenza or other infections] although it refers to CFS & AIDS, the following excerpt may be of interest:
Abstract: "Extracts of Echinacea purpurea and Panax ginseng were evaluated for their capacity to stimulate cellular immune function by peripheral blood mononuclear cells (PBMC) from normal individuals and patients with either the chronic fatigue syndrome or the acquired immunodeficiency syndrome.
PBMC isolated on a Ficoll-hypaque density gradient were tested in the presence or absence of varying concentrations of each extract for natural killer (NK) cell activity versus K562 cells and antibody-dependent cellular cytotoxicity (ADCC) against human herpesvirus 6 infected H9 cells. Both echinacea and ginseng, at concentrations > or = 0.1 or 10 micrograms/kg, respectively, significantly enhanced NK-function of all groups.
Similarly, the addition of either herb significantly increased ADCC of PBMC from all subject groups. Thus, extracts of Echinacea purpurea and Panax ginseng enhance cellular immune function of PBMC
See DM, Broumand N, Sahl L, Tilles JG. In vitro effects of echinacea and ginseng on natural killer and antibody-dependent cell cytotoxicity in healthy subjects and chronic fatigue syndrome or acquired immunodeficiency syndrome patients. Immunopharmacology 1997; 35(3): 229-35.
ESSENTIAL FATTY ACIDS (EFA's) are necessary for healthy neurological function and general good health. Commonly known as Omega 3, Omega 6 and Omega 9, this group of fatty acids can be obtained from oily fish such as tuna, mackerel, etc. and certain grains such as flax seed. EFA's are commonly known as "good fats".
Cod liver oil, flax seed oil, olive, sunflower and canola oils are among the many sources of EFA's. All are damaged by light, heat, oxygen, processing and contaminants and should be refrigerated, protected from light and sealed tightly to avoid oxidation.
Supplements in gel capsule form may help overcome some of these problems. It is recommended that a chosen supplement (or both supplement and diet) should supply Omega 3, 6, & 9.
Dose rates will vary according to manufacturer, quality and age of product, storage and other factors. Three servings of fish weekly (White fish provide less EFA's than darker fleshed fish) and/or a high quality supplement should provide useful amounts of EFA's in most cases.
It is believed that taking flax seed oil regularly may contribute to prostate cancer. Whether this is proven to be correct in the long term is unclear.
Omega 3 fish oils may also inhibit nitric oxide synthase damage in the brain and central nervous system.
GABAPENTIN (NEURONTIN) This was shown to be ineffective in several studies including a study with 102 patients on the drug and 102 on a placebo for 9 months. Previously this prescription medication, used for epilepsy, was reported by some researchers to be effective in slowing the progression of ALS.
Patients were started on 300 mg. once per day, increasing to 300 mg. three times per day over a one-week period. 1. ALS and Neuromuscular Research Foundation Pacific Presbyterian Medical Center 2351 Clay Street, #416 San Francisco, CA 94115 (415) 923-3604 2. National ALS Association 15300 Ventura Boulevard, Suite 315 Sherman Oaks, CA 91403 (818) 990-2151 (See Neurontin, below)
GINSENG The following information is from "Beneficial effect of ginseng root in SOD-1 (G93A) transgenic mice". Jiang F, DeSilva S, Turnbull . J McMaster University Medical Centre, Rm 4U7, 1200 Main St W, Ontario, L8N 3Z5, Hamilton, Canada
Many patients with amyotrophic lateral sclerosis (ALS; motor neuron disease) use natural or traditional therapies of unproven benefit. One such therapy is ginseng root. However, in some other disease models, ginseng has proven efficacious.
Ginseng improves learning and memory in rats, and reduces neuronal death following transient cerebral ischemia. These effects of ginseng have been related to increases in the expression of nerve growth factor and its high affinity receptor in the rat brain, and antioxidant actions, inter alia. Since such actions could be beneficial in ALS as well, we studied the effect of ginseng (Panax quinquefolium), 40 and 80 mg/Kg, in B6SJL-TgN(SOD1-G93A)1Gur transgenic mice. The ginseng was given in drinking water, from age 30d onwards.
We measured the time to onset of signs of motor impairment, and survival. There was no difference between the two ginseng groups (n=6, 6) in either measure. However, compared to controls (n=13), there was a prolongation in onset of signs (116d vs. 94d, P<0.001), and survival (139d vs. 132d, P<0.05).
These experiments lend support to the use of ginseng root in ALS. Future experiments using this model could examine for symptomatic effects of ginseng, measure the effect of specific ginsenosides (which differ between ginseng species), and elucidate their mechanisms of action.
GDNF Please note: use of intravetricular GDNF has been discontinued in Australia as it is believed to be ineffective in treating ALS/MND.
"Glial cell line-derived neurotrophic factor (GDNF) has significant therapeutic potentials, in particular for neurodegenerative disorders... our results indicate that retinoic acid has additive effects. These data indicate that 1,25-(OH)2 D3 is a potent inducer of GDNF expression and may contribute to the regulation of GDNF in vivo."
According to a special edition of this digest Prof. Bradley (Miami) had said "GDNF looks to be in the laboratory probably the most encouraging drug, in terms of the effect upon motor nerve cells."
The "retinoic acid" mentioned in the above article is a derivative of Vitamin A. Unfortunately vitamin D and vitamin A are both toxic from a (rather uncertain) dose on. So one has to be cautious about taking supplements of vitamin D or vitamin A. But being cautious does not mean to abstain. What makes it even more complicated is that retinoic acid is just one part of the vitamin A family and they all differ in their toxicity.
Naveilhan P; Neveu I; Wion D; Brachet P: "1,25-Dihydroxyvitamin D3, an inducer of glial cell line-derived neurotrophic factor." Neuroreport, 7 (13) 2171-5 /1996 Sep 2 Institut National de la Sante et la Recherche Medicale, Centre Hospitalier Universitaire, Angers, France.
GLUTATHIONE For Information
GLYCONUTRIENTS are the eight special sugars necessary for the body's metabolism. They are vital for helping the immune system identify bacterial and viral invaders and help repair cells and critical in maintaining joints and the mucus lining of the gut and the airways.
It has been claimed that the science of glycobilogy will produce great advances in medicine in the next decade. Glyconutrients are in spoiled foods, where fungi and moulds have converted ordinary sugars to one or more of this special group. They're found in shiitake and reishi mushrooms, rice bran, some root vegetables related to yams, and aloe vera juice. They also come in supplement form.
HMB (Beta-Hydroxy-beta-methylbutyrate) is a food supplement that helps stimulate the immune system by promoting the production of white blood cells. It lowers cholesterol and allows it to be usefully metabolised to maintain healthy cell production, metabolises fats, lowers stress and helps build muscle mass in active individuals.
HMB is normally recommended to improve athletic performance but may have a role in treating ALS/MND and other neurodegenerative disorders.
A small book on HMB by Dr R Passwater & Dr John Fuller is available through Keats Publishing Inc., New Canaan, Connecticut, USA. HMB and the book on HMB are available through Quality of Life Products, PO Box 524, Blair Athol, SA 5084 Australia. Telephone 1800 80 6661 Fax (08) 349 6661
IMMUNOCAL®, a natural protein, raises the level of Glutathione or GSH, our cells' own major antioxidant. Drugs such as NAC have been developed to do this but their side effects can make them unsuitable for daily use. Extensive research and clinical trials have demonstrated that glutathione will enhance the immune response system with over 40,000 professional articles from research centers around the world attesting to this.
GSH or Glutathione raises fighter T cell levels in lymphocytes, neutralizes free radicals, is a powerful anti-oxidant that helps regulate other antioxidants. It detoxifies the liver, removing 12 known carcinogens from the cells and suppresses the growth of tumors.
Low Glutathione levels are implicated in immune compromised individuals, neurodegenerative diseases such as MS, ALS, Alzheimer's and Parkinson's, atherosclerosis, cataracts, diabetes, damage from many pharmaceutical drugs, cancer and poor survival rates for victims of AIDS.
As a major detoxifying agent in the body, glutathione benefits the entire immune system by providing more protection from bacterial and viral infections as well as support for the detoxification of chemical pollutants, carcinogens and ultraviolet radiation.
Glutathione is a tripeptide that must be manufactured in the cell. Oral glutathione is ineffective. The limiting substrate for glutathione synthesis is the amino acid cysteine. Oral cysteine is rapidly catabolized in the GI tract carries a toxic potential.
Glutathione levels are depleted by: * Chronic diseases.* Exposure to radiation, pollutants and toxins. * Pharmaceutical drugs that stress the liver.* Free radical activity (Oxidative Stress).* Infection.* Injury, Trauma.* Levels are lowered with age.* Intensive athletic activity.
Immunocal® is the only clinically proven natural food supplement to consistently optimize the levels of glutathione in the cells and thereby improve the body's immune system response to combat immune related diseases. It contains a critical concentration of three bioactive proteins: i.e. the thermolabiles, serum albumin, alpha lactalbumin and lactoferrin.
Immunocal is all-natural and has no documented adverse effects. It provides high amounts of cystine, cysteine, and glutamylcystine bound to larger molecules, which serve as a cysteine delivery system, with high bioavailability and no known toxicity.
The same company also makes pnt 200, a naturally-sourced bioactive milk peptide in capsule form, which they claim helps relieve the feelings of stress and anxiety. Although derived from milk, it has no lactose or fat. The peptide binds to the same " active GABA receptors" in the human brain as do the drugs of the Valium family. One can expect to "feel relief from stress, anxiety, anger, fatigue, tension and muscle spasms" within half an hour according to the manufacturer.
ISOTONIX Not a single product but a "delivery system" for various supplements in which the absorption rate is 6-7 times greater because it is in an isotonic state when it enters the stomach. Rather than digesting the supplement, and therefore losing nutrients and adding time, the stomach releases a valve to the small intestine where 95% of the supplement is absorbed in five minutes or less.
It contained a combination of herbs (listed below) that have long been used to treat inflammatory conditions. In combination they may offer relief from inflammatory symptoms, improve digestion and as ALS/MND and other chronic illnesses may have an inflammatory component, could possibly be used as part of a regimen to treat neurodegeneration.
They have also used Boswellia (Boswellia serrata) for relief of inflammation and joint pain.
Devil's Claw (Harpagophytum procumbens) has analgesic and anti-inflammatory properties often used to ease joint pain.
Curcumin is derived from Turmeric (Curcuma longa) which is used widely in Indian cuisine to provide the yellow colour in curries and aid digestion. It has been shown to have anti inflammatory and antioxidant properties and is also used to support liver function and to treat some skin conditions.
Bromelain is a protein digesting enzyme derived from the pineapple plant. Turmeric is better metabolised when combined with bromelain.
Hesperidin is a flavonoid, one of the brightly coloured substances in fruits and vegetables. Flavonoids have antioxidant qualities and like bromelain also have anti inflammatory properties.
Natures Sunshine provide a number of these herbs individually or in combination.
Also see Turmeric below.
KAVA KAVAPiper methysticum is a plant native to the Pacific Island region, and has been used ceremonial for thousands of years. It has a calming effect, relaxes skeletal muscles and, in combination with other supplements (notably magnesium complex) may reduce the painful symptoms of fibromyalgia.
It has been used to reduce cramping, headaches, muscle pain, stress and to improve sleeping. The active ingredients are a group of substances know as kava lactones (AKA kava pyrones). Four lactones in kava have been found to have significant analgesic and anaesthetic effects via non-opiate pathways.
Kava's most popular application is as a natural anxiolytic, comparing favourably in several studies to a number prescription medications, including benzodiazepines. CNS effects seem to be mediated by several mechanisms. Studies have been conflicting regarding its GABA-receptor-binding capacity, although this has been found to occur in some studies. In vitro kava has been found to block norepinephrine uptake.
It also has some anti-convulsant capabilities, which appear to be mediated by Na+ channel receptor sites. The therapeutic dosage is in the range of 50-70 mg kava lactones three times daily. Aside effect, usually seen only with long-term, heavy usage of the herb, is a scaly skin rash called "kava dermopathy." It has also been know to potentiate other medications such as barbiturates and Xanax.
LECITHIN A natural substance manufactured by the liver. Lecithin has numerous functions within the body, acting as a powerful fat dissolving agent that converts fats and cholesterol into microscopic particles that readily pass through arterial walls to be utilized by the body.
The liver can produce only a limited amount of lecithin so when excess fats are eaten the body accumulates cholesterol and unnecessary fat particles within the bloodstream. This occurs if one regularly eats saturated animal produce: meat, cheese, eggs, butter and other animal fats whilst eating insufficient fruits, vegetables, whole grains, legumes, nuts and seeds. All processed and refined foods are lacking in lecithin so attempt to consume adequate, uncooked, natural foods.
Lecithin comprises 28% of the brain matter of a healthy person. The relationship between the lecithin content of the brain and mental capacity suggest that a regular intake of lecithin may help prevent mental fatigue and other forms of mental stress. During times of stress, lecithin contained in the body (especially the brain) is rapidly used up . If this lecithin is not replaced regularly with the diet, fatigue, irritation and other forms of mental confusion may develop. Lecithin is a natural tranquillizer.
Lecithin is made from a mixture of phospholipids, consisting of essential fatty acids, phosphorus and the B group vitamins Choline and Inositol. When you eat foods high in phospholipids, your body produces natural lecithin. Lecithin supplements are mainly extracted from corn and soya beans and are obtainable in the form of lecithin granules (the best value), lecithin powders, flakes, oils and tablets.
A regular supply of fruits, vegetables, whole grains, legumes, nuts and seeds will aid your body to produce natural lecithin. Lecithin supplements are easy to take and combine very well with most foods. Whenever you eat eggs, cheese, meat or cooked food, add some lecithin granules after the cooking process. There are no known toxic levels of lecithin supplementation.
Lecithin is part of the structure of every living cell of the body, especially the brain and liver. It is also part of the endocrine gland tissues -(thyroid, parathyroid, adrenal, pituitary, sex glands, pineal, pancreas and thymus) and the kidneys and muscles of the heart.
The majority of processed, refined and artificial foods have lost their lecithin content. With the marked increase of environmental pollution and other prevalent toxins, an increased intake of lecithin would be advisable. Lecithin supplements should help protect your body and neutralise environmental toxins. Regular intake of alcohol, preservatives and unnatural foods will lead to a lack of lecithin reserves within the body (especially the brain).
L-LYSINE has been used to treat Infection, Fever, Fatigue and Low Concentration. It is an essential amino acid required for healthy growth, tissue repair, enzyme production and strengthening immunity. It is a protein building block that strengthens and nourishes the structural, circulatory and immune systems. L-Lysine is necessary for helping the immune system produce antibodies necessary for warding off viral infections, making it beneficial for treating herpes, cold sores, mouth ulcers, and fevers. L-Lysine is also beneficial for regulating glands, controlling acid/alkaline balance and assisting with the assimilation of all amino acids.
If ALS/MND is virally triggered this may be relevant:
L-Lysine deficiencies may include fatigue, moodiness, anaemia, poor concentration, reproductive problems and slow development. L-Lysine supplementation helps maintain the health of the structural, circulatory and immune systems.
Women who are pregnant or nursing should avoid taking L-Lysine unless prescribed by their health care practitioner. L-Lysine is not produced by the body and must be obtained via the diet. Some natural food sources for L-Lysine include lima beans, kidney beans, potatoes, corn, red meat, fish and milk.
"Oral doses of 1-3g/day of L-lysine divided among meals have been shown to inhibit the recurrence of herpes simplex infections in certain individuals... L-lysine has been shown to inhibit strokes in experimental animals...
A safe intake would appear to be 1 to 3g L-lysine per day, in the form of L-lysine monohydrochloride taken with meals [most L-lysine capsules/tablets provide 500mg of l-lysine monohydrochloride].
Higher doses have not yet been tested for safety and should therefore not be used regularly. The biological value of cereal diets can be increased by the addition of L-lysine foods with a high biological value are always high in lysine and generally have a lysine:tryptophan (L/T) ratio of 5-8 by weight."
(N W Flodin "The metabolic roles, pharmacology and toxicology of lysine" Journal of the American College of Nutrition, 1997, Vol 16, No 1, 7-21 This reference article touches on every aspect of lysine chemistry inside and outside the human body).
MANGOSTEEN is a tropical fruit that has been demonstrated to provide numerous health benefits. Dr. John Edwards of the Oakland Health Clinic in California demonstrated that the Xanthones found in Mangosteen fruit may regenerate neuronal tissue.
The Xanthones derived from mangosteen are anti oxidant, anti inflammatory, anti viral, anti fungal and bacteriacidal. Because of its wide ranging beneficial effects, mangosteen may be useful in the treatment of neurodegenerative and other illnesses.
MEMANTINE Memantine is a derivative of the decades old anti-influenza drug Amantadine. Memantine is used in Germany to treat Parkinson's disease, dementia in the elderly, and to speed the recovery of comatose patients. Memantine may also be useful for people with neurological disorders. Significant research has been undertaken for AIDS-related neurological disorders.
While the root cause of neurologic problems is probably different from what causes Parkinson's or dementia in the elderly, people with these problems all lose neurons, the key brain or nerve cell, in much the same way. Much of what we know comes from experience in Parkinson's disease.
As the theory goes, too much of certain amino acids in the brain send signals to neurons that make them self-destruct. Memantine keeps to a minimum the destructive signals that neurons receive. What's worse, test tube and animal studies show that the HIV protein gp120 can also send neurons self-destruct signals.
If the theory is correct, another drug being studied for neurologic problems, nimodipine, may increase the effect of memantine. Unfortunately, nimodipine is currently an extremely expensive a prescription drug.
Doses of Memantine range from 5-60 mg a day, depending on the condition that it is being used for. 10-30 mg a day seems to be the standard maintenance dose in patients with Parkinson's disease. Since there is little information on the use of memantine in PALS, it makes sense to start at a low dose, such as 5 mg a day.
Research indicates that Memantine has the potential to provide protection against nerve cell injury associated with both neuropathic pain and AIDS-related (and possibly other?) neurological problems. The company believes that potential drugs that prevent excessive activation of the NMDA receptor, NMDA receptor antagonists, may have the ability to reduce the potentially damaging and lethal influx of calcium into neurons.
The company believes that there is considerable medical and commercial interest to develop NMDA receptor antagonists to treat neurodegenerative disorders.
Many NMDA receptor antagonists previously evaluated in human clinical trials either prevented glutamate from binding to the NMDA receptor, or blocked the NMDA receptor channel for a longer period of time than was safe. While they protected neurons from excitotoxicity, they also prevented normal signal communication and interfered with essential functioning.
Such interference resulted in some cases in hallucinations, psychosis or even coma. Unlike many previously tested and other NMDA receptor antagonists now in development, Memantine acts to modulate the NMDA receptor calcium channel, rather than to block it completely. It stays in the channel long enough to reduce the calcium influx, but not so long that it blocks calcium flow completely, interfering with normal functioning.
The profound side effects associated with many other calcium channel blockers have not been reported with therapeutic doses of Memantine. Memantine is approved and marketed in Germany for neurodegenerative disorders such as spasticity and Parkinson's disease.
NTI® believes that the positive attributes of Memantine (orally administered and favourable safety profile) provide a strong therapeutic and commercial opportunity. NTI® has begun Phase II human clinical trials of Memantine to treat neuropathic pain and AIDS-related dementia. The potential to develop Memantine for other medical conditions, including stroke, is currently being evaluated in pre-clinical animal studies.
The company has been actively building a research consortium of leading neuroscientists to facilitate the development of novel neuroprotective compounds. The goal of this program is to apply NTI®'s knowledge of the NMDA receptor and the chemical structure of Memantine to discover second-generation NMDA receptor antagonists with enhanced pharmacologic effects. Company collaborators have identified several approaches, begun synthesis of a library of compounds, and tested several of these in proprietary screening assays for novel receptor activity.
Memantine is fairly well tolerated in the elderly but since there have been no clinical trials using memantine in PALS, be careful if you decide to take this drug. The potential for adverse or unexpected side effects for this kind of drug might be much greater in PALS. Let your doctor know immediately of any adverse reaction. Be extra careful if you are on any antidepressants such as Prozac or Zoloft since memantine may effect the way they work.
Akatinol brand memantine is made by Merz Pharmaceuticals in Germany. It comes in boxes of 50 x 10 mg tablets (which can be split in half for patients who wish to start at 5mg a day).
MINOCYCLINE A tetracycline derivative with anti-inflammatory potential independent of antimicrobial activity, was shown to reduce both the apoptotic neuronal death and microglial activation. Researchers conclude that the cytotoxic action of CSF is prevalent in all MND cases and that microglia may mediate the toxicity of CSF by releasing excitotoxicity-enhancing factors.
NALTREXONE Low Dose Naltrexone (LDN) boosts the immune system, activating the body's own natural defences. This is claimed to be useful in ttreating many illnesses, including ALS/MND by New York practitioner Bernard Bihari, MD.
The brief blockade of opioid receptors that is caused by taking LDN at bedtime each night is believed to produce a prolonged up-regulation of vital elements of the immune system by causing an increase in endorphin and enkephalin production.
Normal volunteers who have taken LDN in this fashion have been found to have much higher levels of beta-endorphins circulating in their blood in the following days. Animal research by I. Zagon, Ph.D., and his colleagues has shown a marked increase in metenkephalin levels as well.
The therapeutic dosage range for LDN is from 1.75mg to 4.5mg every night. Dosages below this range are likely to have no effect at all, and dosages above this range are likely to block endorphins for too long a period of time and interfere with its effectiveness.
A number of patients who do not appear to respond to 3mg do respond when the dose is increased to 4.5mg. (Some PALS may need to purchase naltrexone as a solution in distilled water with 1mg per ml dispensed with a 5ml medicine dropper. If LDN is used in a liquid form, it is important to keep it refrigerated.)
IMPORTANT: Make sure to specify that you do NOT want LDN in a slow-release form. See Low Dose Naltrixone (LDN) http://www.lowdosenaltrexone.org
NEOTROFIN This drug, soon to be released for the treatment of Alzheimer's Disease, may also assist in nerve regrowth in other neurodegenerative diseases. For more information
NEURONTIN (GABAPENTIN) This was shown to be ineffective in a study with 102 patients on the drug and 102 on a placebo for 9 months. However, the Western ALS Study Group announced results of a study of Gabapentin to the American Academy of Neurology in San Francisco. The drug has an affect on the glutamate, a natural amino acid in the brain and a normal part of us, which tends to be too thick in ALS patients and is toxic to motor neurones. Gabapentin is known to thin this glutamate to what is hoped to be helpful.
The study measured the arm strength in people with ALS (PALS). It was designed so that if the effect of the drug were to slow the rate of weakening of the muscles by 50% there would be at least an 80% likelihood of detecting this effect in a way that would be statistically significant. Results were encouraging but not conclusive.
PALS treated with Gabapentin declined more slowly than those on placebo. Peer group evaluations of the study remain to be done. Placebo-Controlled Gabapentin (Neurontin) Study in ALS Patients treated with Gabapentin declined more slowly than those patients on placebo. The rate of weakening of arm muscles in patients on Gabapentin was 24% to 37% slower than patients taking placebo.
The variation (24-37%) in the amount of slowing depends on the method of analysis. The likelihood that these findings could be due to chance, when in reality there was no effect, was between 1 in 12 and 1 in 17. These findings are not conclusive, but are considered to show a trend towards a beneficial effect. Confirmation of an effect will require additional testing.
Based on the encouraging findings of this screening study, the investigators favour further study of Gabapentin in patients with ALS. One of the investigators told me that the 24-37% numbers were derived from the difference in the slope of the lines measuring arm strength over time. Some doctors believe these numbers to statistically insignificant. This study did not attempt to measure the effect of Gabapentin on survival or quality of life. Although, one of the investigators did mention that he thought there was a trend towards increased survival.
Neurontin is sometimes used to control the unbearable pain of nerve root compression such as that experienced with acute sciatica. It can be more effective than strong opiate analgesia for certain patients.
NEURALGINS GGF2 Cambridge Neuro Science Inc. said it can accelerate its efforts to find a pharmaceutical partner with whom to develop the therapeutic applications. GGF2 is a member of the neuregulin family of proteins produced by cells of the nervous system. Neuregulins are believed to play important roles during the development of the nervous system and during the regeneration of neural and muscular systems following damage.
OMEGA FATTY ACIDS See Essential Fatty Acids
OLIVE LEAF has many uses and contains several antioxidants. Its wide applications include boosting the immune system which makes it useful for treating viral and bacterial infections such as colds, influenza and other respiratory problems. It can help relieve stress and anxiety and is claimed to improve general wellbeing. Olive leaf extract may also be useful in maintaining healthy blood sugar and cholesterol levels. In liquid form it can be used topically to treat some skin infections and minor wounds.
PEDF Pigment Epithelium-Derived Factor was found to protect motor neurones, more effectively than Riluzole, in a spinal cord culture model by scientists at Johns Hopkins. .
PHENTERMINE and Fenfluramine (PHEN/FEN) may provide a way of treating ALS/MND. Fenfluramine is not currently available in the U.S.A. but is available in Australia and elsewhere.
Briefly, the possible influence of serotonin and dopamine on the progress of ALS/MND were kindly explained by Pietr Hitzig, M.D. Baltimore, MD, 21201.
Serotonin and dopamine are neurotransmitters and major regulators of many bodily functions. TH1, the cell-mediated immune system utilizes free radicals to perform their cell destroying work. When this system is accentuated autoimmune illnesses appear. TH1 cytokines especially TNF-alpha, in excess, increase neuro excitatory neurodestructive forces to damage CNS cells. The intermediaries in this process include AMPA, QUINolinic acid and especially Glutamate.
Main Points: Serotonin inhibits TNF-alpha. 5-Hydroxytryptophan (5-HTP) a serotonin precursor, increases serotonin and therefore inhibits TNF-alpha. Since TNF-alpha promotes Glutamate synaptic levels by being a Glutamate reuptake inhibitor, 5-HTP increases Glutamate reabsorption. Since Glutamate in excess causes ALS/MND and other neurodegenerative processes, 5-HTP may remit ALS/MND and other similar processes.
PHOSPHATIDYLSERINE (A Soy Extract) Phosphatidylserine is a building block for brain cells, rebuilding and vitalizing brain function. Clinical trials have shown that it is one of the most beneficial brain nutrients. It aids the free movement of nutrients in and out of brain neurones, metabolises glucose (essential to brain/nerve nutrition) and protects brain cells.
Taken orally, Phosphatidylserine is rapidly absorbed and readily crosses the blood brain barrier. As it is extracted from a soy/lecithin based concentrate small amounts of Phosphatidylserine may be available in soy products such as Lecithin granules, soy milk, tofu, etc. See also Lecithin.
RILUTEK/RILUZOLE The only drug approved by the FDA in America to treat ALS/MND. This drug will not cure ALS/MND but is claimed to slow its progress by approximately 3 months in some cases.
Side effects vary and it is recommended that liver function be closely monitored whilst taking this drug. Some studies suggest that it is advisable to take high dose vitamin E and other antioxidants in conjunction with this drug. Reports on its efficacy and negative side effects vary widely. This drug is not available in all countries and a neurologist should discuss the possibility of taking Rilutek/Riluzole, and the pros and cons of doing so, when a patient is diagnosed with ALS/MND.
I am often asked my opinion about this drug. I have never taken it but have communicated with hundreds of PALS that have. My conclusion is that the majority seem unable to tolerate the side effects, which in some cases are severe, and only a small percentage seem to report any significant benefit from taking the drug.
I would not take the drug because of it's recorded deleterious effect on liver function. I do not accept that the claim that it can "prolong life by approximately 12 weeks" is scientifically justifiable given the variable manner in which all but "textbook cases" of ALS/MND can progress. If one can tolerate the side effects and has a rapid and aggressive form of ALS/MND, taking this drug may be justified.
SAMBUCOL Developed by renowned Virologist Dr. Madeleine Mumcouglu, this elderberry extract is derived from the Black Elder tree Sambucus Nigra. Dr. Mumcouglu's patented procedure allows for the extraction and standardization of the active ingredient, clinically tested and shown to have anti viral properties.
Used around the world primarily to treat colds and influenza, Sambucol is believed to inhibit viruses from attacking the body's cells and therefore may assist in treating other viral illnesses. The preventative dose rate is 2 teaspoons daily. To treat viral infections the dose is 4 x 2 teaspoons daily.
"Researchers gave half a group of influenza patients Sambucol and half a placebo. In 3 days, 90% of the Sambucol-treated patients were completely cured. Not only did their symptoms go away, but blood tests showed that the 'flu was gone. In contrast, those who took the placebo took six days to feel well again." William Campbell Douglass, M.D.
Sambucol is made by Razei Bar Industries Ltd., Israel and Distributed by Nature's Way Products, Utah 84663.
SAMe S-adenosylmethionine or SAMe (pronounced Sammy) is a compound naturally produced in the human body when ATP, the body's main energy molecule, combines with methionine. SAMe is responsible for much methylation that occurs in the body. Methylation is necessary for regulation of neurotransmitters, proper gene function and preservation of cell membranes. SAMe supports liver and brain chemistry function. With age, the production of SAMe in the body typically declines.
Low levels of SAMe have been linked to such conditions as osteoarthritis, depression, fibromyalgia, liver disorders, migraines, and age-related memory problems. A 1996 study showed that people with Alzheimer's disease had lower brain levels of SAMe and a 1990 trial reported that SAMe levels were significantly lower in severely depressed patients than in a control group.
Methylation and the Brain
It has been demonstrated that levels of methylation in the brain can affect the numbers of various brain receptors, some of which influence transmission between nerves, muscle coordination, learning and memory.
Because SAMe is a naturally occurring substance within the body and is utilised as part of the normal process of methylation within the brain, it tends to support a normalisation of brain chemistry. SAMe helps to rebalance neurotransmitter production and to normalise brain receptor activity so that receptors are more responsive to seratonin and dopamine.
SILYMARIN This herb Silybum marianum, also known as St Mary's Thistle and Milk Thistle, has been used as a liver tonic for centuries. Numerous scientific research papers have revealed it to be antioxidant, anti-inflammatory, liver protective and liver regenerative. (Australian Journal Medical Herbalism Vol 4 (1) 1992).
Silymarin blocks the toxic effect of phalloidine and has powerful liver protective capability (Vogel, Temme: Arzneim Forsch 1969,19:613-15). It helps hepatocytes (liver cells) regenerate and assists in protecting microsomes and mitochondria from lipid peroxidation. Its protective effect on the liver is stronger than that of vitamin E and the cytochrome P450 enzymes in the liver that play an extremely important role in detoxifying the body are improved by the silibinin in Silymarin.
Recommended doses range from 350mg to 2000mg daily. (175mg of extract is equal to 14 grams of the dried fruit).
Silymarin protects dopaminergic neurons against lipopolysaccharide-induced neurotoxicity by inhibiting microglia activation. Source: Eur J Neurosci 2002 Dec;16(11):2103-2112
Abstract: An inflammatory response in the central nervous system mediated by activation of microglia is a key event in the early stages of the development of neurodegenerative diseases. Silymarin is a polyphenolic flavanoid derived from milk thistle that has anti-inflammatory, cytoprotective and anticarcinogenic effects.
In this study, we first investigated the neuroprotective effect of silymarin against lipopolysaccharide (LPS)-induced neurotoxicity in mesencephalic mixed neuron-glia cultures. The results showed that silymarin significantly inhibited the LPS-induced activation of microglia and the production of inflammatory mediators, such as tumour necrosis factor-alpha and nitric oxide (NO), and reduced the damage to dopaminergic neurons.
Silymarin may also inhibit nitric oxide synthase damage in the brain and central nervous system.
SPIRULINA Spirulina is a blue-green microalgae vegetable plankton. An ancient plant traditionally used as a nutritive. It has been utilised as a rich source of protein, vitamins, minerals, essential fatty acids and chlorophyll. It can also provide useful amounts of beta-carotene.
TESTOSTERONE Testosterone is much more than a sex hormone. The body requires testosterone to maintain youthful cardiac output and neurological function.
There are testosterone receptor sites in cells throughout the body, most notably in the brain and heart. Testosterone improves oxygen uptake throughout the body, promotes red blood cell production, aids protein synthesis for maintaining muscle mass and bone formation, helps control blood sugar, regulate cholesterol and maintain neurological function.
Many male PALS have low testosterone levels. It is unlikely that ALS/MND causes low testosterone levels and unclear if low testosterone contributes to neurodegeneration. Whether hormone replacement therapy or naturopathic supplementation (Panax Ginseng has been recommended) will assist in treating ALS/MND is unknown but this may become clearer as more data are gathered from PALS around the world.
TESTOSTERONE & IMMUNOSUPPRESSION
THROMBOPOIETIN is a thyroid hormone that may regenerate endogenous stem cells of the central nervous system. It also boosts blood platelets and it is believed these have a neuroprotective effect. It has been used to treat ALS with some success but this treatment is not generally available. The ALS Association is actively following the progress of research with thrombopoeitin (rhTPO) and can be contacted via their website.
TINIDAZOLE is an anti-parasitic and mycoplasmas and Lyme (borrelia) spirochetes are essentially parasites so it's use makes sense if mycoplasmas are involved in ALS/MND. Tinidazole has not been approved by the FDA because Pfizer has not tried for approval. Pfizer thinks that there would not be enough of a US market to justify the cost. More on tinidazole
TRIENTINE A chelating agent to remove copper. Useful in Wilson's Disease. It contains: gelatin, iron oxides, stearic acid, and titanium dioxide as inactive ingredients, the trientine is ethanediamine dihydrochloride. It removes the copper mainly from the liver. Clinical experience is limited, possible adverse reactions include: iron deficiency anemia, asthma, systemic lupus and more if patient also has cirrhosis. Is being trialed in combination with Allopurinol and other supplements to treat ALS/MND but results are inconclusive at this time (Sept 2000).
TURMERIC (Curcuma longa) is a member of the ginger family and has long been used for healing. Western medical researchers discovered inflammation-fighting compounds called curcuminoids. The most important and intensively studied is curcumin, which contains several strong antioxidants.
Turmeric is not particularly well absorbed when taken orally, so use products that combine it with bromelain, protein-digesting enzymes found in the pineapple plant.
Scientists conjecture that turmeric benefits such neurologic illnesses by minimizing inflammation, a theory supported by findings that people regularly taking prescription anti-inflammatories for arthritis are less likely to develop Alzheimer's disease.
For inflammatory and GI-related ailments: Take 400 to 600 mg (containing 95% curcumin) in capsule form three times a day. Continue until symptoms are relieved. If there is no improvement after a week of continuous use, then it is unlikely turmeric is going to help.
Common use: Indigestion; promotes bile flow (improves digestion of fats); gas; nausea; bloating; loss of appetite; arthritis; gallbladder complaints; gastritis; high cholesterol; liver complaints; jaundice; inflammation; poultice for cuts, bruises and psoriasis.
WATER This is not a joke. If ALS/MND is triggered by excessive free radical activity or toxic substances in the body it is essential that you drink sufficient water to aid the liver and kidneys to "flush" these from your body. Tea, coffee and alcohol act as diuretics and can promote dehydration if used in excess. They also stress the liver.
Fruit juices can assist with hydration but plain water is even better. You should drink a minimum of ten 15fl oz/400ml glasses of water per day in addition to other fluids. Some doctors and naturopaths recommend an even higher water intake based on bodyweight (it is medically accepted that 2.5 litres of fluid per day is the recommended minimum intake to maintain basic metabolic function) but exact recommendations vary.
Some tips on drinking water:
Drink tea/coffee, carbonated soft drinks, milk and particularly alcohol as "treats" rather than as your primary fluid sources. (For every one of these treats drink an extra glass of water to compensate). Numerous studies, particularly in the field of sports medicine, stress the importance of adequate fluid intake and suggest plain water is best.
If (as I suspect) liver function is implicated in the rate at which ALS/MND progresses the more plain water you drink the easier it will be for your liver and kidneys to function adequately.
Our bodies contain and average of 40 litres/9.5 gallons of water - Blood = 92% water, Muscle = 80% water, Overall bodyweight is 60%water.
I drink around ten glasses (approx 4 litres/9 pints) of filtered water at room temperature, daily (sometimes more in hot weather). My consumption of, and any craving for, other fluids is minimal. I had a history of drinking both tea and coffee to excess and these were once my primary sources of fluid each day. I do not crave tea or coffee now but do not deprive myself of either if I feel like drinking them occasionally.
4 litres/9 pints may sound like a lot of water and I admit that I struggled to drink this amount for the first few days. Now it feels perfectly normal and I comfortably drink even more. People of smaller stature may find that their maximum intake is less than mine so consistency is more important than actual quantity and your personal intake can be adjusted accordingly.
A frequent need to urinate was a problem for the first week or so but this settled to what I would consider "normal" for me. See the "Liver Function" page for an explanation of why I elected to increase my daily water consumption.
There is a book on the benefits of hydration called "Your Body's Many Cries for Water" by Dr. F. Batmanghelidj, a London educated Iranian doctor. He recommends drinking water at the rate of 1fl oz per 2lb bodyweight or 35ml per kilo. He also suggests taking 1/3 of a teaspoon of sea salt daily for biochemical reasons clearly explained in his book.
I have only read excerpts from this book (and do not know the publisher's name) but have sighted a favourable review in Borderlands [A Quarterly Journal of Borderland Research Vol LIII, Number 1, First Quarter 1997]. Find more information and testimonials on the Water Cure You can e-mail Dr. F. Batmanghelidj
WHEATGRASS Made by juicing week-old shoots sprouted from winter wheatgrass grain, contains approximately 70% chlorophyll. Chlorophyl is a chemical cousin to hemin, part of haemoglobin, the red iron-rich oxygen-carrying portions of human blood. Chlorophyll is also bacteriostatic, fights strep and staph infections, mouth odours and gum disease, and promotes wound healing by stimulating the production of connective tissues.
A single ounce of fresh juice is equal in nutrient value to 2-1/2 pounds of vegetables. (Unfortunately, there is little hard data to support this claim). According to one study, dehydrated wheatgrass beats wheat sprouts, spinach and broccoli in providing 17 of 21 specific vitamins and minerals. Though it is available in powdered and tablet form, fresh-squeezed juice is considered best.
The juice is said to be a "complete" food, containing all the vitamins and minerals essential to the human body, in a form more easily absorbed than traditional multi-vitamin supplements and pills. Nutrients in foods usually coexist with numerous other factors that enhance and enable their function.
Wheatgrass is a powerful "detoxifier" of both the liver and large intestine. Consequently, people should gradually increase from one ounce a day to eight ounces spread throughout the day. Too much can release too many poisons too fast.
Those with wheat allergies or sensitivities can use wheatgrass juice because it has completely transformed into a vegetable with none of the allergic proteins common to glutenous grains. Allergies are usually a reaction to the gluten found in the wheat grains and wheat grass contains no gluten.
XANGO see Mangosteen above.
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