THE MISINFORMED, QUACKS AND CHARLATANS PREY ON MS PATIENTS
UNFORTUNATELY MANY PRESCRIPTION DRUGS USED
ARE ALSO NOT CLINICALLY TESTED FOR MS
You however are responsible to manage your own health.
UNFORTUNATELY MANY PRESCRIPTION DRUGS USED
ARE ALSO NOT CLINICALLY TESTED FOR MS
You however are responsible to manage your own health.
MULTIPLE SCLEROSIS WHAT
IS ITS CAUSE ?
MULTIPLE SCLEROSIS Return
to M.S. INDEX
HEALTH OPINIONS Return
to HEALTH OPINIONS INDEX
KEEP IN MIND: A doctor cannot ethically prescribe a treatment until clinical results are known that the treatment is likely to do more good than harm. This standard however is not followed in the use of most drugs.
Alternative therapies are any medical practice or intervention that has not been scientifically documented as safe and effective against specific diseases and conditions. This would include 85% of prescription drugs used for other than their tested and intended purpose. The terms and definitions are not agreed upon.
All (most) doctors use 'off label drugs' and some use herbals when all else fails. In my mind if the benefits out weight the risk and the patient is aware of the risk and possible lack of benefits and the cost is reasonable, then why not. If there is no risk and only a possible placebo benefit, again then why not, never underestimate the ability of your body to fight disease.
Alternative medicine is a 14 billion dollar business because the patient
is empowered rather than being a victim.
It is noteworthy that Anette Funicello the mouseketeer with MS has tried human placenta
shots, bee sting, blood cloning, vitamin and magnetic therapy without success.
About 42% used some form of alternative therapies in 1997 and it was estimated that 629 million visits were made to practitioners of alternative medicine; this was greater than the number of visits to all primary care physicians that year. 40% were taking herbs or vitamins and did not discuss using them with their physician. From 1990 to 1997 the numbers had increased by 25% and visits to alternative practitioners increased by 47%. 60% of patients did not discuss alternative therapies with their physicians, no change from 1990. It is suggested that alternative therapies is more prevalent in people with MS than in the general population, one study suggested 2/3. Ms'ers visit alternative practitioners 40% more than the general population.
Spontaneous cure are fairly common. Severe debilitating attacks can be followed by miraculous spontaneous cures for no apparent reason. Multiple sclerosis due to its unpredictable nature leaves the patient extremely venerable to quacks both within and external to conventional medicine.
Conventional medicine, and their medical journals is full of inaccuracies and is therefore troubling. Many claims of drug effectiveness are exaggerated or based on poor science. Many conventional drug usage is not subjected to objective, randomized, controlled clinical trials.
A research team conducted a typical internet search for information
on a single type of cancer and analyzed a sampling of 400 retrieved pages’
50% of the pages contained treatment information that has not
been validated by scientific scrutiny.
6% had wrong information and many others had misleading information
They concluded that physicians should steer patients towards
trustworthy sites and always “consider the source” of Information. If
the study was drug company sponsored, the results are surely biased.
Unfortunately many doctors are computer illiterate or feel their authority is threatened if you seek a second or third opinion. If you do use the internet for research you should use many sources and review the source type. Some good sources have recently locked their access doors to the general public. One can only conclude they think the public is ignorant or they are too paranoid to expose their own uncertainty. Medicine is not an exacting science. Most people and diseases are just too complex for simple solutions. A good doctor respects your opinion and a good patient respects the doctors opinion. The patient, if of age and soundness of mind, always has the final say, its their body.
ABC(R) MAIN LINE CONVENTIONAL DRUGS (Avonex® (interferon beta-1a), Rebif® (interferon beta-1a), Betaseron® (interferon beta-1b) and Copaxone® (glatiramer acetate), are being seriously challenged by the National Institute for Clinical Excellence (NICE) for England and Wales. Initial findings suggest the modest benefits do not justify the very high cost of these drugs. Neurologists are already divided on the issue. A final conclusion is not expected until July 2001 (A compromise was achieved but in my opinion the results still stand).
The Claim: Decrease the number and severity of relapses, slow the progression of the disease, decrease the development of new brain lesions.
The Rebuttal: The Drug Company studies do not effectively address the placebo factor and therefore the effectiveness of the therapy are exaggerated.
See the Conventional Medications for more information on this subject.
ALTERNATIVE MEDICINE
ACUPUNCTURE effective for nausea and vomiting, one self assessment study in B.C. suggested 2/3 of 217 Ms patients reported beneficial effects, improvement in pain control, spasticity, bowel and bladder difficulties, tingling, weakness, walking difficulties in coordination and sleep disorders. Side effects include pain and soreness at needle site and a worsening of some symptoms such as fatigue, spasticity, dizziness and walking unsteadiness. One person suggested it caused an Ms attack. As a result of small studies the following symptoms were provided some relief by acupuncture; anxiety, depression, dizziness, pain, (including facial pain, low back pain, and neck pain), bladder difficulties and weakness.
It would appear that acupuncture sites are more sensitive in people with MS. Over a 20 year period, only 216 serious acupuncture-related complications have been reported world wide. It is believed most serious complications are caused by poorly trained or negligent acupuncturists.
22% of Ms use acupuncture
ANTIGEN-SPECIFIC IMMUNOTHERPY a study on monkeys suggests large doses of antigen appear to destroy T cells that attack myelin. Antigen is the protein that makes up the myelin sheath. This sounds like another decoy drug like Copaxone®. The road from animal testing to human testing is a long process.
ALPHA-INTERFERON was tested to evaluate the effect of rate of MS attacks. Both the interferon and the placebo treated groups had a 60 to 70% decline in the rate of MS attacks. They also tested the natural killer cell activity as alpha-interferon is known to increase the natural killer cell activity. Alpha-interferon caused the killer cell activity to increase 52% but the placebo group had a nearly identical increase of killer cell activity. These and other results suggest there are other powerful influences of the mind over disease process such as MS.
AROMATHERAPY
Application of about 40 essential oils, individual or in mixtures, and applied by massage, mixing in bath water or inhalation. In France also applied internally by mouth, vagina or rectum. Warnings have been issued not to be taken internally. It is noteworthy that 10 to 20% of MS people have impaired sense of smell.
Aromatherapy is of low risk and reasonable cost. Several small clinical studies suggest beneficial effects for anxiety and depression. One large study found no effect on pain. About 5% of people appear to be allergic to fragrances.
ASPARTAME
Some claim aspartame, an artificial sweetener, causes MS or worsens MS associated symptoms. Limited studies suggest it could provoke headaches, worsen depression and encourage weight gain. No association with MS has been detected by limited study.
AYURVEDA
A harmonious relationship between mind, body and spiritual awareness is believed to be important in treating MS. Ayurveda has low risk and moderate cost. Massage, meditation and yoga may provide beneficial effects for anxiety, depression, pain and spasticity. This area has not been fully studied.
BEE POLLEN, ROYAL JELLY, Raw Honey, Propolis (bee glue) studies have show no benefits. Bee pollen has no therapeutic properties. Raw honey has no therapeutic properties. Royal jelly may suppress the immune system
BEE VENOM THERAPY
Charles Mraz first advocated bee venom therapy in the 1930's. The theory is that the bee sting produces inflammation at the site of the sting causing the body to mount an anti-inflammatory response. It is believed this anti-inflammatory acts against the bee sting but also agains other inflammatory process in the body.
Advocates claim that 10,000 MS patients are presently using bee venom. All claims are based on anecdotal evidence. There is no scientific evidence to support this therapy. I have not seen any clinical trials in progress.
Contains a number of anti-inflammatory products (Melittin & Adolapin). Also contains 16 other substances a few of which are histamine, dopamine, norepinephrine, serotonin, apamin, melittin, mast-cell degranulating peptide and minimue, phospholipase A2 and Hyaluronidase.
Studies with animals suggest that
venom treatments produced worsening relative to those that received a placebo.
Earlier tests on mice showed no benefits. New studies by Georgetown
University 1999 are being conducted as to the safety of the therapy and may
eventually test effectiveness. Treatments are 2 to 3 times per week for 6 months.
Bee sting may induce optic neuritus.
BIOFEEDBACK
Biofeedback may have application for MS related symptoms, anxiety, insomnia, by promoting relaxation. Spasticity, stiffness in arms and legs may respond to biofeedback. Claims of regulating or altering the immune systems have produced non-consistent results by limited studies.
Biofeedback is low risk with moderate cost and may be beneficial for MS but more study is required.
CANDIDA a species of yeast has shown no benefit for MS or MS related symptoms.
CANNABIS (see Marijuana) There have been many anecdotal reports of the benefits from MS sufferers. Cannabis contains tetrahydrocannabinol (THC) and lab tests on mice suggest it dramatically reduces MS tremors and plasticity. The compounds of cannabis block two brain and spinal cord receptors to limit excess excitation of the nerves. (March 2000)
CHELATION THERAPY
Chemicals that bind metals are administered for health reasons. Claims have been made since 1955 that it may be beneficial for MS and many other diseases. The only known clear benefit is for heavy-metal poisoning. There is no well documented clinical or scientific study that indicates chelation therapy is an effective treatment for MS and it is very expensive.
14% of Ms used this therapy
CHIROPRACTIC MEDICINE
About 160 million Americans visit chiropractors yearly. It was developed in the United States in the 1890's. The American Medical Association banned physicians from association with chiropractors in the 1960's. In 1990 the Supreme Court ruled the conventional Medical Profession was guilty of conspiracy to contain and eliminate the Chiropractic Profession. Chiropractic medicine includes spinal manipulation techniques or adjustments and discourages the use of drugs and surgery by encouraging the body to heal itself. Ultrasound, massage, herbs, vitamin and dietary recommendations are employed by most. Many patients claim that when conventional medicine failed, the chiropractic medicine diagnosed and corrected the problem.
Low back pain associated with MS responds to chiropractic medicine, neck pain had less clear results. Because the conventional medical community is so biased clear approved clinical studies have not been conducted. It is noteworthy that they claim there is no clear evidence that chiropractic therapy is beneficial for MS attacks or altering the course of the disease. This claim could also be applied to conventional medicine. Most MS patients prefer medicine that improves the bodies ability to fight with, or cope with, the symptoms of MS. Chiropractic medicine is low risk with moderate cost and does have beneficial effects.
30% of Ms use chiropractic medicine
COFFEE AND CAFFEINE CONTAINING DRUGS.
Tea, chocolate, cola nuts, Guarana etc.
Caffeine affects fatigue but has not been studied relative to Ms. It improves mental alertness but no evidence it improves fatigue. Decreases the activity of lymphocytes (an immune cell) which could be beneficial to MS but has not been studied.
Generally considered safe but excessive levels of any chemical should be researched. Some potential down side includes irritability, anxiety, in somnia, heart palpitations and upset stomach.
COLON THERAPY
Colon therapy has recently been suggested for people with MS. The claim is detoxification using herbs and enzymes in enemas. Standard enemas are effective for constipation but does not appear beneficial for MS.
COOLING THERAPY
It has been known since the 1950's that cooling therapy has been beneficial to MS patients. It has been known that small increases in body temperature causes worsening of symptoms in 60 to 80% of the Ms community. Cool showers, air conditioning, ice packs, drinking cold liquids and special cooling garments have been employed. Small studies have shown improvement in fatigue, leg strength, walking, transferring, urination, spasticity, vision, speech, sexual disorders, cognition and coordination.
COPING is best achieved by staying flexible, optimistic and involved.
24% of Ms use relaxation/meditation
10% of Ms use guided imagery/visualization
36% of Ms use prayer for self
28% of Ms use prayer for others
17% of Ms use yoga
43% of Ms use massage
COUNSELING Helps relieve emotional stress and is especially beneficial in first three to five years upon being diagnosed.
CRANBERRY JUICE
It was previously believed that cranberry juice acid makes urine acidic and this fights urinary tract infection. This is untrue but cranberry juice contains fructose and a class of chemicals called proanthocyanidins. These chemicals don't destroy bacteria but appear to keep bacteria from attaching to the walls of the urinary tract. The bacteria are unable to cause an infection and are simply passed in the urine. It is noteworthy that this assumes the urine is completely voided and the Ms'er drinks an adequate supply of fluids. One study in 1994 suggested a 50% reduction of bacteria but only after 2 months use. There has been inadequate research especially in the area of prevention. Conventional medicine focuses on anti-biotic drugs, after infection, rather than prevention. Urinary trouble in MS affects 45% of patients, is avoidable, shame on physicians who rely on drugs to manage this condition.
CRANIOSACRAL THERAPY
Also called cranial therapy, cranial osteopathy and craniopathy is a form of bone manipulation to smooth the flow of cerebral spinal fluid to improve the immune system.
There are no clinical studies to support this therapy. The theoretical basis for the therapy is not consistent with current understanding of the nervous system.
DENTAL AMALGAM REMOVAL
Some claim the slow release of amalgam causes or worsens MS by damaging the immune system and nervous system. Amalgam is usually composed of mercury, silver, copper, tin and zinc. MS has been associated, based on several weak observations that suggests MS is associated with dental caries, the bacterial disease of teeth that produces cavities and dental treatment. Blood mercury levels are not higher in MS folks than the general public. Dental mercury contribute 10% of the bodies source, other sources are fish, pollution, medications, paints and disinfectants.
It is very difficult to determine with absolute certainty whether a compound such as dental amalgam is completely safe. There is no strong indication that dental amalgam removal has a beneficial effect on MS. In other words removal of dental amalgam should be based on general health or other health concerns not just MS.
It is known that lecithin an extract of soy bean is very beneficial for treating Ms Cognative Imparement (2003)
Those who believe Ms is induced by enzyme and/or excitotoxins claim vitimins B-12, B-6, B-1 and D, folate, vitamin C, natural vitamin E (Mixed tocopherols) and L-carnitine are beneficial. The say it more important to avoid all Aspartame and all excitotoxins, fluoride, and vaccinations.
Excitotoxins are Amino Acids, mainly Aspartate, Glutamate, Cysteine that sever as neurotransmitters. The question seems to be that the consumption of these chemicals in nature are balanced, its the artificial use in food products that don't normally contain the chemicals. Like pop, baby foods, junk foods and spices.
Aspartame: Should not be consumed, ever, Nutrasweet, Equal, Spoonful, Canderel, Benevia, Misura, or products containing Phenylalanine or Phenylghetonurics. It is also know these chemicals put on weight.
DIETS There is no data from controlled trials that any diet is especially beneficial for MS patients. Good eating habits however are good living habits. It is known that some foods interact with the immune and nerve systems but these interactions are not well researched. Those who have their pet diet fads continually attempt to claim an MS link. I believe that diet has a profound impact on our health and too few dollars are directed towards this type of research.
It is hopeful that in the future some foods (chemicals in foods) will prove to be beneficial for MS patients. It is noteworthy that little research dollars are directed to potential solutions that do not attract potential drug company profits.
29% of Ms use low fat diet
18% of Ms use supplementsProfessor Roger MacDougall diet (1) a diet based on the "hunter-gatherer" concept that existed before man developed an agricultural community and before domesticated cattle, (2) the use of "live" foods whenever possible, (3) adding nutritional supplements as appropriate to known and observed MS deficiencies. This strict diet based on the hunter-gatherer model almost totally removed gluten, processed sugar, milk fat, and animal fats from the diet. It was reported very successful in his one case and it was never determined if he had spontaneous remission. It took 4 years for him to see any results.
Dr. Roy Swank diet The diet is very strict concerning the dietary intake of fats. It is referred to as a low-fat diet with a 90% reduction of fat intake as compared to the typical American diet. Included in the diet protocol is the use of rest and nutritional supplements--including highly unsaturated fish oils (EPA and DHA) and olive oils. The data from the clinic were not conducted in a controlled environment nor was this data part of a classic double-blind test; however, the results realized by his 4,000 MS patients are considered by some to be remarkable. Swank focused on Norway, where two very interesting observations were made. High concentrations of animal fat (and high incidences of MS) were part of the regular diet inland, while the diet of the coastal population was low in fat (with a corresponding low incidence of MS). The difference between these geographic locations was eightfold--that is, inland people had eight times the incidence of MS experienced by coastal people.
ECHINACEA a drug developed by the North American Indians to manage
viral infections, especially the common cold, but should not be taken for MS or other autoimmune diseases.
Echinacea stimulates two components of the immune system, macrophages and T
cells. Macrophages and T cells are already excessively active in MS and
the mainline ABC (R) drugs are designed to decrease their activity. This
herb will impair the activity of these drugs and will likely worsen the
MS. Echinacea taken with a chemotherapy drug such as methotrexate can
cause liver damage. Clinical trials in 2005 suggests echinacea has no benefit in
fighting the common cold.
ENZYME THERAPY
Enzymes are a type of protein used to perform chemical reactions. It is claimed that treatment with enzymes is beneficial for many diseases, including MS. There are no well-documented benefits of enzyme therapy for people with MS. It would appear that not enough is known about this potential therapy.
EVENING PRIMROSE OIL
42 % of Ms use this oil
EXERCISE No special exercise is especially beneficial for MS patients however it appears to help with depression. Exercising does reinforce ones desire not to let Ms get the upper hand. A positive mind set to fight the disease is one of the most important therapy.
A University of Utah study 1996 with 54 MS patients suggests benefits for weakness, impaired bowel and bladder function, fatigue, depression and anger. Mixed results are common in this controversial area. There is likely no doubt that exercise produces emotional benefits that in turn improves symptoms through other systems.
A stress/recovery exercise program that was claimed to correct imbalances in the immune system and cure Ms was conducted in 1995. Doctor Irving I. Dardik who was responsible for the process had his medical license revoked.
Exercise is simple, safe, low-cost approach that may benefit MS associated symptoms. Some suggest regular exercising promotes the release of pain-killing endorphins thereby improving ones ability to manage some of the symptoms of MS.
FELDENKRAIS
The focus is efficient and comfortable body movement. It claims to decrease stress, relieve pain, and improve balance and coordination. A small study did not improve MS symptoms but it decreased stress and may have reduced anxiety. This therapy is safe, low to moderate cost that has undergone limited investigation.
FLAVONOIDS Primarily anthocyanosides (anthocyanosides), proanthocyanidens (proanthocyanidins) and procyanidolic (procyanididolic) oligomers (PCO's) appear to strengthen the BBB (Blood Brain Barrier).
Commonly found in blueberries, cherries, blackberries, grape skins, grape seeds and bark and needles of certain pine trees. The latter being marketed as pycnogencls.
It is known that the onset of new MRI lesions is preceded by a break down of the blood brain barrier (BBB).
Rat research suggests that flavonoids maybe beneficial to MS and may also reduce inflammation. It is believed they will improve the BBB (Blood Brain Barrier) to reduce or eliminate T-cells, virus or other attacking materials to the myelin or nerve materials.
Grape seed extract has been used since 1995 and is deemed relatively safe if consumed in quantities recommended. It has not been clinically tested with humans. (Jan 2000) The down side is flavonoids also stimulate the immune system which is detrimental to Ms..
Flavonoids are also believed to destroy free radicals by acting as an anti-oxidant. They also are believed to attack the enzymes called macrophages (scavenger cells) that destroy myelins by digesting its proteins and lipids. It is also known that the body disposes of unused Flavonoids very quickly so use of this relative cheep chemical should be spread throughout the day. Flavonoids appear to be gaining acceptance but no human trials are currently planned. (09-2000)
Cree remedies using blueberry plants and evergreen tree extracts (source of flavonoids) is being tested with a $900,000 grant to test Cree medicines. They believe these remedies help control diabetes.
GARLIC
More than 1,000 studies over the past 20 years have evaluated this herb. Many are suggestive, but not conclusive. Garlic stimulated two types of immune cells, macrophages and lymphocytes that may adversely affect Ms through its immune-stimulating activity. The immune system in MS is already over active.
17% of Ms use garlic
GINKGO BILOBA
This herb has been evaluated in 160 human clinical studies and is sometimes recommended for MS. A 1997 study concluded it was effective in treating cognitive difficulties in the elderly. A 1995 study suggests the herb does not help treating Ms attacks refuting a previous 1992 study. It is not know if the herb is effective with MS cognitive troubles. Increased bleeding is a down side.
GINSENG
Two types of ginseng are used, Asian and Siberian and they are believed to increase resistance to stress and increase energy levels. The Asian herb has a chemical structure similar to steroids that suppress the immune system. Studies however suggest the herb stimulates the immune system cells, including T cells and macrophages. The herb likely worsens MS fatigue or accentuate the sedating effects of medications and alcohol. Increased bleeding is a down side. It is suggested MS patients avoid this herb.
GLUTON FAD A fad by Professor Roger MacDougal based on fact that MS is low in China who eat rice. No benefit was found in a study of people with MS who did not consume gluten.
GOLDENSEAL
Contains berberine and hydrastine and is often used in combination with echinacea. Goldenseal may produce sedation and therefore could worsen MS fatigue or increase the sedating effect of other medications and alcohol.
GRAPE SEED EXTRACT
see flavonoids
KAVA KAVA
Contains kavalactones or kavapyrones believed to produce a relaxant effect to decrease anxiety. It is also used for insomnia.
HERBS
Herbal medicine was the beginning of modern medicine dating to about 60,000 B.C. Traditional Chinese medicine dates to 3,000 B.C. and ultimately more than 10,000 different Chinese herbal formulas were compiled. Mainstream pharmaceutical companies have entered the marketing of herbal therapies. There are few standards for safety, effectiveness or quality in the American system.
12% of Ms use Chinese medicine
Herbals like any drug should be reviewed on their own merits without main stream medicine generalizations.
IMMUNE SYSTEM HERBS The immune system has two components the cellular immune system and the humoral immune system. Conventional medicine focuses primarily on the abnormalities in the cellular system. Ms however is known to involve both systems and herbs effect both systems. It is known which drugs stimulate the immune system but not if it effects the human systems positively or negatively. Those herbal drugs known to stimulate the immune systems include:
Alfalfa - Arnica - Astragalus - Boneset - Calendula - Cat's claw - Celandine - Drosera - Echinacea - Garlic - Ginsemg, Asian - Ginseng, Siberian - Licorice - Mistletoe - Reishi mushroom - Saw palmetto - Shiitake mushroom - Stinging nettle.
SEDATING HERBS Sedating herbs can adversely effect MS if combined with other drugs such as Baclofen®, Zanaflex®, Valium® and Klonopin® or alcohol. Those herbal drugs known to have possible sedating effects include:
Balm - Barberry - Black cohosh - Calamus - Calendula - California poppy - Capsicum (cayenne) - Catnip - Celery - Chamomile - Couchgrass - Elecampine - Ginsemg, Asian - Ginseng, Siberian - Goldenseal - Gotu kola (hydrocotyle) - Henbane - Hops - Jamaica dogwood - Kava kava - Lavender - Lemon balm - Motherwort - Passionflower - St. John's wort - sage - Sassafras - Scullcap - Shepherd's purse - Stinging nettle - Valerian - Wild carrot - Wild lettuce - Withania (ashwagandha) - Yerba mansa.
STEROID INTERACTION HERBS Steroids should be avoided if you are taking these herbs as they increase blood sugar and decrease blood potassium or increase the potency of the steroids:
Aloe - Bayberry - Buckthorn - Cascara sagrada - Devil's claw - Elecampine - Ephedra (ma huang) - Fenugreek - Figwort - Ginseng, Asian - Gotu Kola (hydrocotyle) - Licorice - Lily-of-the-valley - Pheasant's eye - Senna - Squill.
URINARY TRACT HERBS The following herbs may irritate urinary tracts:
Asiatic dogwood - Asparagus - Buchu - Celery - Cinnamon - Coffee - Cola nut - Copaiba oleoresin - Cubeb - Dill seed - Eucalyptus - Fragrant - Guarana - Horseradish - Juniper berries - Lovage - Mate - Myrrh gum - Parsley - Pennyroyal - Pine needles - Rue - Sandalwood - Sassafras - Tea - Thyne - Watercress - Yellow cedar - Yerba mansa.
UNKNOWN HERBS with possible toxicity or uninvestigated toxicity
Anelica - Blue cohosh - Borage - Calamus - Chaparrel - Coltsfoot - Comfrey - Dong-quai - Ephedra (ma-hung) - Foxglove - Garcinia - Germander - Kombucha - Life root - Lobelia - Mistletoe - Muira puama - Pangamic acid - Pau d'arco - Pennyroyal - Rue - Sage - Sassafras - Scullcap - Suma - Tansy - Woodworm - Yohimbe.
Bearberry aka Uva Ursi, suggested for urinary tract infection, contains hydroquinone, has not been thoroughly studied as to effectiveness and maybe toxic.
HIPPOTHERAPY horseback riding as a therapy claims to be beneficial for walking problems. It is possible the benefits especially improved mood and quality of life are psychological related. Cost run from $35 to $150 per hour.
HISTAMINE (see Procarin Patch) New forms of the histamine fad have appeared at a fraction the cost of Procarin. My golden rule is if the price is reasonable (Procarin is $250.00/month) (others are $3.00/month) and there are no serious known adverse effects then why not try it. I myself wouldn't try it because there is no scientific rational that might lead me to want to try it. It is well known that the placebo effect can be triggered by religious belief, a plecebo or just a belief that something will work. Let us never underestimate the power of the mind or of God.
HOMEOPATHY is based on the 'law of similar' "like cures like". The assumption is if a large dose of a substance produce specific symptoms, very small doses of that substance will cure the same symptoms. Another assumption is that water has a memory, if the original substance is so diluted that they do not contain even a single molecule of the original substance the water contains the memory of the substance. Homeopathy focused on identifying symptoms and the personal features of the individual using the body's natural healing process. Conventual medicine disregards the body's natural healing abilities and rather relies on drugs. Some believe the process enhances the placebo response. A low-risk, low to moderate cost but with unproven effectiveness.
HYPERBARIC OXYGEN is a form of oxygen therapy administered under increased pressure in a chamber. Seven studies failed to support the original study of benefits for Ms.
HYPNOSIS a mind-body therapy. No large studies for Ms have been conducted. Anxiety, pain, migraine, spinal cord injury have responded to hypnosis. This therapy is well-tolerated, low to moderate cost and may help with Ms symptoms.
LECITHIN (Phosphatidyl Choline) is taken up directly by the brain at once to help the brain make acetylcholine. It was believed that only alcohol or powerful drugs were thought to be able to cross this blood brain barrier so easily. Autopsies show that multiple sclerosis patients have significantly less lecithin in the brain, spine and myelin sheath than normal persons. The autopsies also show that the lecithin that is present in the brain and myelin sheath of these MS victims is essentially composed of all saturated fatty acids and no unsaturated fatty acids. MS is also known to have a much higher incidence in countries where the diet is high in saturated fats. We have since learned that its trans fats rather than saturated fats. Lecithin act as an emulsifier and breaks down the fats and cholesterol in the diet into tiny particles and held them in suspension, preventing them from sticking to blood platelets or arterial walls. Lecithin granules are considered most effective and should be taken at meal time. Lecithin oil has been known to aggravate complexion problems. I have not seen clinical studies to support this theory but the risks and cost appears low. Foods high in lecithin include soybeans, other legumes, grains, wheat germ, brewers yeast, fish, and egg yokes. Soybeans is considered more effective than egg yokes.
My wife with Ms is about 9.3 on the physical disability scale and has advanced cognitive impairment. She doesn't know where she is 3-4 times a week, is unable to speak for short periods of time, maybe 5-6 times a week. Is very confused while attempting to discuss things. We started, 1 tab/day, 1,200 mg unbleached, pure soy lecithin October 18, 2003. Within the first week she has not had a single loss of location incident. She has not had one single incident of being unable to speak during the day and only one incident upon first awaking at night. Friends and family can't believe the improvement especially in her renewed participation in discussions. There has been no noticeable difference in the physical attributes of Ms. Not known is if these improvements are permanent or just a temporary improvement. These improvements are still evident January, 2005. In February 2005 I have noticed some return of mild cognitive Impairment. It is too soon to be sure but I suspect the disease is still progressing but has given us 2 years or more of arrested progression. Wife has had swallowing of liquids problems with fluid going into lungs and has shown a marked improvement under lecithin but we have had one return episode in February 2005. August 1, 2005, some examples of cognitive impairment, one incident of not knowing where she is, three incidents of mild logic confusion during July. I think these warning symptoms of cognitive impairment are equal to 2000 symptoms. I suspect we have just bought time in the progression of this disease symptom? Wife is mostly confined to bed with bed sore battle.
WARNING One side effect of lecithin is elevated blood sugars. Both myself and my wife developed elevated blood sugars. We have both being using lecithin for the same period 1,200 mg, unbleached, pure soy. I elevated from 7.1 to 8.1 and ranged to 9.1. I withdrew myself from lecithin after day-1, I dropped to 8.7, after day-2, I dropped to 8.3, these were all fasting tests and normal diet was not changed for test period. The wife's blood sugars remain consistently high. We will continue to monitor progress. In February 2005 doubled dose to 2,400 mg lecithin but blood sugars elevated to 12.0 and 14.0 so we cut back to 1,200 mg. Blood sugars dropped back to 8.1 over a few days.
MAGNETIC THERAPIES The American Medical Profession does not accept the hypothetical belief of readjusting the bodies bioelectrical signals. This belief was very active in the nineteenth century. University of Washington (Dr. Richards) is researching this belief. A small double blind study resulted in subjective improvements of 8 different symptoms, bladder control, cognitive functioning, spastocity and fatigue. The clinical rating was unchanged but 19% had increase in Alpha brain wave activity during the language tests. Magnetic Therapeutic Technologies (Dr. Richards) was under FTC (Federal Trade Commission) investigation (6-99).
Three MS patients in England had reduced tremors when extra cranial application of brief AC pulsed electromagnetic fields in the Pico Tesla range was applied. It was suggested that a more controlled study maybe appropriate.
MARIJUANA (Dronabinol or Narinol®) and a synthetic form of THC (Nabilone or cesamet®) There are several forms of marijuana. Some claim it is effective in the treatment of Ms for pain, nausea, plasticity or muscle stiffness but this is not based on well-designed clinical studies that are currently being conducted. One concern is that Marijuana contains 50% more cancer-causing chemicals (nitrosamine and benzene) than conventional tobacco.
A well defined study in UK confirms that marijuana does help MS patients: Nov 6, 2003
Pain 54% on pot vs. 37% on placebo = 17% improvement in managing pain
Walking 20% on pot vs 4% on placebo = 16% improvement in walking
Spasticity 60% on pot vs. 46% on placebo = 14% improvement in spasticity
It is noteworthy that the placebo group showed marked improvement and this is a know factor that drugs companies like to minimize on their main line studies thereby over stating the drug benefits.
MASSAGE Some have claimed it increases self-esteem, improves social functioning, reduced anxiety and depression. Others have experienced headaches, muscle pain and lethargy. A few as a result of deep abdominal massage has caused internal bleeding. It is deemed a safe therapy if applied correctly but is not supported by adequate clinical study.
MEDITATION Includes prayer, biofeedback, meditation, hypnosis, yoga and guided imagery sometimes called mind-body-therapy. These therapies have been known to cause response to multiple body processes such as heart rate, blood pressure, breathing rate and pain management. Some claim they help with stress, anxiety, depression, insomnia, pain, improved self-esteem and even miraculous cures.
MILK FROM COWS maybe linked to the onset and possible aggravation of multiple Sclerosis. Research suggests Multiple Sclerosis and Juvenile diabetes are far more closely linked than has been previously thought, and may in fact be different manifestations of the same disease. It looks as if the disease is really one process and if you get the wrong set of genes, you get Ms, or the other set of genes, you get diabetes. The underlying disease looks almost the same. Juvenile diabetes is an auto immune disease where the immune system attacks Beta cells in the pancreas and it is suspected a diet that includes cow's milk increases the risk of juvenile diabetes in those genetically susceptible and may also increase the risk of developing Ms for those genetically predisposed to that disease. 03-2001 This is the result of research by the Sick Children's Hospital, St. Michael's Hospital and Sunnybrooke and Women Health Sciences Centre (both in Toronto and Children's Hospital of Pittsburgh. NOW in my opinion this is a long way from positive proof relative to the well being of children, and it is irresponsible to make significant changes to the diet of children on speculation. If adults want to exclude cows milk from their diet based on speculation they had better include a calcium supplement.
MUSIC THERARPY Has not been subjected to much investigation but some suggest it helps with anxiety, depression, cognitive trouble, walking, co-ordination and pain.
NEURALYN Has no support of any scientific rationale and the suppliers only say it includes natural extracts, vitamins and amino acids that are applied to the skin. It is expensive and not supported by clinical trials.
PADMA
Also known as Badmaev 28 and Gabtr-nirynaga contains more than 20 different herbs and calcium, is some times recommended for MS. It is believed to have a mild antioxidant effect. One study is promising showing 44% symptom improvement but details were lacking.
PSYLLIUM
A form of dietary fiber is used for constipation and approved by the FDA. Should not be taken by Ms folks who have swallowing difficulties.
PROCARIN PATCH (PROKARIN AND GOODSHAPE) www.insidetheweb.com/mbs.cgi/mb711608
There has been a long history of MS being associated allergies during the 1940's and 1950's. Recent studies indicate that people with MS have nearly 70% fewer allergic symptoms and more than 80% fewer positive allergy tests than the general population. This appears to be a result of the underlying immune system being over active. There is no strong evidence to suggest that MS is associated to a specific food or environment factor.
MS Society position is no controlled clinical trials were conducted.
There is no scientific rational to suggest possible benefits
It is experimental, without FDA approval and not covered by insurance.
Claims are based on anecdotal stories of ten primary people who used
the patch for 90 days. Jean Campbell 206-937-7612 and Connie Getchman
and Cathryn Reaugh are listed. Dr. Daniel Nehls, Tacoma Neurosurgion
headed the test group. Seven of the ten said they had some improvement
(increased energy and functions, likely the result of caffeine), others complained of drowsiness and sleeplessness.
Reports of eight taking the drug - 5 no change 2-4 weeks, 2 getting
worse (4 wks) and 1 getting better 4 wk). The cost is $250 per month
while one supplier is offering the formula and process etc. for a one time
cost of $300. J. Wright of the Tahoma clinic in Kent, Washington
interfaced with MS Society personnel.
Developed by Elaine DeLack Dx88 with MS a nurse living in Tacoma, Washington,
who claims it is from a Dr. Ninton (Hinton) Jonez (deceased) in the 1950’s.
This doctor believed that MS was caused by an allergy. He used histomine
and curare (d-turbocurarine) to treat his patients. Histomine to
control the allergy and curare for muscle plasticity. Dr. Bayard Horton
was also involved with histomine treatments in the 1940's. These studies
used intravenous histamine, tubocurarine, physical therapy and allergy testing
but did not employ strict clinical trial guidelines nor placebo-treated groups.
Procarin users have reported worsening of asthma to severe asthmatic
attacks. Rashes are common where the patch is applied.
HISTAMINE blocks
Allergic reaction
Motion sickness, nausea and vomiting
Induces sleep
Reduces stiffness and tremors in Parkinson’s diseaseCURARE alias NUX VOMICA is an alkaloid of strychnine and brucine
Stimulates respiration
Slows heart action
Raises blood pressure
PROTEIN CD45 is the master switch for the immune system. It
sends the ceasefire order once the body has vanquished a foe such as a
virus. If the immune system goes after healthy cells this can result in
diseases such as diabetes, multiple sclerosis, heart disease and even
some cancers. CD45 also regulates the growth of red and white blood
cells. The tests are at the mouse stage. This however should be
viewed as very promising, some even say "Eureka" " its the Holy
Grail". January 18, 2001 Toronto
PYCNOGENOL
A mixture of chemicals known as oligomeric proanthocyanidins, or OPCs. These chemicals are similar to those in grape seed (see flavanoids) and act like antioxidants. No formal studies have evaluated its effect on MS. It is not known if antioxidants are beneficial to MS.
SNAKE VENOM FAD
Although the snake venom treatment for Ms based on anecdotal evidence
proved bogus, research has found a use for it in treatment of heart attack.
The snake chemical called platelet glyco-protein 2B3A receptor inhibitors
dissolves blood clots by interfering with the function of blood platelets.
ST JOHN'S WART
An antidepressant not clearly chemically identified. Contains hypericin and hyperforin. No studies directed at possible effect on MS. It is suggested it lowers the levels on interleukin-6 (IL-6), an immune system chemical that activates the immune system and may be involved in the flulike side effects on MS interferon drugs.
SPIRULINA
Also known as blue-green algae used for fatigue. It is believed it stimulates the immune system. No study has verified these claims.
STINGING NETTLE
May have anti-inflammatory and pain reliving actions. May activate T cells but no studies have been conducted for effects with MS.
T'AI CHI Claims to balance the yin and yang and to improve emotional and social function, improve walking speed, decrease muscle stiffness. The claims for Ms are unproven but it is a low risk, low-moderate cost therapy and may have benefits.
THERAPEUTIC TOUCH No large clinical studies have been conducted for Ms. Therapeutic touch is based on the religious practice of "laying on of hands". It actually does not include touching but hands are held 2-4 inches above the patient. Some claims have been disproved. Other claims include relief of anxiety, depression and pain. It is low-risk, low-moderate cost but requires more research.
TOXINS Many claims have been made that toxins cause or worsen Ms symptoms and therefore require toxin removal therapies, such as chelation therapy and colon therapy. Removal of dental amalgam, zinc, mercury, avoiding aspartame, processed foods, tap water, aerosol sprays, house cleaning products, synthetic fabrics and gas appliances to name a few. There is no strong scientific or clinical evidence that a specific toxin plays am important role in causing Ms or worsening its symptoms. It is known that the body is well designed to deal with toxins, the liver has biochemical mechanisms for converting toxic chemicals to nontoxic chemicals and the kidneys are able to remove potential toxins from the body. All cells, including nerve cells, are very resilient and have mechanisms for combating toxins. It is believed this risk is very low but many people remain unconvinced that our food supply has been adequately tested. Some continue to believe that toxins may attack the bodies toxin defense systems. It is noteworthy to remember that a belief exists that some unknown environmental factor contributes to the cause of Ms.
VALERIAN
Used as a sedating and calming drug. Has been effective for insomnia. Classed as a safe drug.
VITAMINS and HERBS There is not data from controlled trials that any vitamin is especially beneficial to MS. The current belief is that a healthy adult on a well-balanced diet does not need vitamins or mineral supplements. The operative word for Ms patients is "healthy". Many however still believe vitamins may help and the search still goes on.
Multivitamins - 61% of Ms take them, a combination of vitamin A, C and E is used to act on 'free radicals'. There is biochemical evidence of free radical damage in people with Ms. Clinical studies suggest that antioxidants man be beneficial to the Ms disease process. The down side is antioxidant vitamins effect the immune system in a way that may worsen the disease by stimulating the immune system.
Vitamin - C - 48% of Ms take this, some for urinary tract infection but clinical studies don't support this belief. High does may stimulate the immune system and possibly worsen Ms.
Vitamin B3 (niacin) prescribed in high dosage to lower serum cholestrol, can cause derangement of liver function, including a devastating form of toxic hepatitus.
Vitamin B6 (pyridoxine) can damage peripheral nerves, causing progressive numbness that has been mistaken for symptoms of Multiple Sclerosis. It has been suggested that taking over 10 mg/day can cause irreversible loss of feeling in arms and legs known as peripheral neuropathy.
YOHIMBE AND YOHIMBINE
Yohimbine is a chemical believed to act like an aphrodisiac. It has some serious side effects such as severe anxiety, high blood pressure, worsening of liver or kidney disease. FDA suggests it is not a save drug for over the counter use.
SWANK DIET @ 1948-1950 that resulted in a 17 year study, and a 34 year study, low saturated fat, no red meat, no high fat dairy products. No randomization was employed, no blinded element was employed, no placebo treated group was employed. The Eskimo or Inuit violate all diet suggestion with no MS cases. It lacks strong clinical studies to support it use. 2001 & 2002 advocates touted eat all the red meat you want. 2003 they now say little or no red meat but all the chicken you want.
RAW FOOD DIET – low fat and gluten free
PECTIN AND FRUCTOSE RESTRICTED DIET
CAMBRIDGE DIET low calorie liquid diet
SUCROSE AND TOBACCO FREE DIET
VITAMIN AND MEGAVITAMIN THERAOIES mega doses vitamin C
ENZYME DIET bacterial and plant enzymes
ECHINACEA People with MS or other autoimmune diseases should not take this herb
MULTIPLE SCLEROSIS Return
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