HOW TO WIN

When diagnosed as having Multiple Sclerosis in 1985, I was in the fortunate position of knowing nothing about the disease. The neurologist explained there is no treatment for MS but added that some of the symptoms I might later experience could be controlled with drugs. To quench my thirst for more information he gave me a few pamphlets from the M S. Society and suggested the library would have books on MS if I needed more information. I joined the MS Society and read all the literature they had available. I also read all the books about MS that were available at the library. It was in a book from the library, by Robert W. Soll that I learned infections can cause MS to exacerbate.

When, several months later, I had another exacerbation, I explained to the neurologist that the exacerbation arrived at the same time as a throat-ear infection arrived. I commented that my recent reading suggested a cause-effect relationship and suggested that antibiotics might clear up the infection and thereby aid in stopping the exacerbation. I was told this wasn't orthodox procedure and that the idea would not be entertained ... as the neurologist walked from the room. No discussion, no logic, no reasoning. I terminated ACTH therapy and signed myself out of the hospital. It was a month and a half later, with no improvement, before I received antibiotics for the infection. Two weeks later I returned to work. An anecdote for the establishment perhaps, to me it was confirmation. I must thank this man for being so self righteous for this situation provided the impetus to learn as much as I could about how MS is affected and what I could do to affect MS

If you are firmly entrenched in the belief that researchers and the MS Society have analyzed, dissected and studied every aspect of every potential beneficial therapy for MS you are sadly mistaken. There are no magic pills to cure MS but there are therapies, there are accounts of failure and of total success. The successful accounts don't deny the person still has MS only that if the person sticks to the therapy they have no symptoms. Stopping the therapy often results in a violent reminder of why it was started in the first place. If you make changes, make them for life.

Morally and by law I cannot and do not offer this information as a prescription. Mention of any persons, books or other information does not constitute an endorsement. The road to fighting MS can be long and hard, its source difficult to find. I only hope to provide a sense of direction for those that wish to fight.

I've read of no ill effects from any of these therapies. Indications are that a healthy person could only become healthier by utilizing them. The only caveat I could add is not to have unrealistic expectations about the end results or the length of time for them to become apparent. For instance, using diet alone results have taken six months to five years to become evident.

Diet:

There have been so many different and opposing opinions on diets for MS that one would be hard pressed to envisage any of them as offering universal potential. There are many reports of fantastic success or dismal failure, for virtually every proposed diet. Then in 1984 Soll pointed out an aspect of diet that would explain most of their failures. He pointed out that certain foods to which one is allergic or intolerant causes inflammation of the intestinal wall. This reduces the integrity of the intestines and allows food proteins and toxins, which are normally too large, passage through the intestinal wall where they are recognized as foreign by the immune system. Thus, normally healthy foods may aggravate the immune system in much the same way as infections, which cause over 30% of exacerbations. The foods which cause this problem are uniquely individual, and should be excluded on that basis. Whether one believes in the four food groups, vegetarianism, fuitarianism or whatever, there is no excuse for consuming refined, processed or otherwise adulterated foods as these have been implicated in most disease diet, or are seeking recommendations in the interim, the Swank diet has been around for 40 years and closely parallels the current recommendations of the American Heart Association and the National Academy of Sciences. Combining the recommendations of Soll and Swank will only increase your odds for success.

Infection:

In 1961 Miller et al. reported that more than one third of exacerbations studied followed infections and another quarter were accompanied by low fever. In 1965 Sibley and Foley found 48% of exacerbations in their study were temporarily associated with a common infection. In the book Multiple Sclerosis 1985, Sartori states "Infections with Hyperpyrexia (high fever) are a true neurological emergency in MS patients". Also, in 1985, Sibley et al. in a study of clinical viral infections reported 9% of infections were temporarily related to exacerbations whereas 27% of exacerbations were related to infections. This study indicates that while having an infections does not necessarily mean you will have an exacerbation, having an exacerbation may mean you have an infection.

Also noted in the 1985 study by Sibley et al., was the fact that up to 80% of primary entroviral infections are symptomless. You, your doctor, and whatever lab tests your doctor might use will not show that you have an infection. This point was made clear to me when I was having problems with my teeth. I asked an oral surgeon if there was a grey area between when a tooth was okay and when it was infected. He replied, yes. I then asked if it were possible for a tooth to remain in this state of limbo for twenty years. Yes again.

The fact that people with MS need to avoid infections and have them treated as actively as possible is more than obvious. Diet, exercise and good mental health, are all important in aiding the immune system in fighting and warding off infections. Perhaps if the establishment treated exacerbations with antibiotics and/or antivirals, instead of or with ACTH fewer people would have to suffer the horrors an exacerbation can bring. I used to be naive enough to think that infections were viral or bacterial in nature and could always be detected then treated. I was unaware of rickettslae, protazoon, amoeba, mold, yeast, etc. and the fact that these have been implicated as causative or antagonistic in MS.

Recently my friend, Rafael, who happens to be a biochemist, dropped by for a visit. Glancing at the typewriter, he asked what I was up to. I explained that I perceived the establishment was negligent by not emphasizing the importance of infections to people with MS. He proceeded to read the 3/4 page summary in the typewriter. When I returned to the room he looked up from the paper with a seldom seen seriousness in his eyes and said this isn't negligence Steve … it's criminal.

Exercise:

Former Professor of Clinical Neurology (Oxford), W. Richie Russell, developed a program of rest and exercise which is reported to result in a benign course of the disease, for those with the discipline to practice it regularly. Rather than utilizing specific exercises the program is based on a proper combination of rest then exercise and could be incorporated in most exercise programs.

Positive results have been reported in the press for both tai chi and yoga. Oddly enough both utilize meditation. Hydrotherapy (water exercise) is also a beneficial form of exercise for people with MS as there is more resistance to movement in water. In water the body also weighs less and its easier on the joints than many other forms of exercise. For those affected by heat, water has the added benefit of cooling the body if the water temperature isn't too high. While hydrotherapy lacks the more sensational claims for tai chi and yoga, it is a highly recommended form of exercise for those with MS.

In the mention of diet and infection it should be apparent that the negative side seems to be the burden or antagonistic effect they have on the immune system. Fatigue is, for some people with MS the most limiting of systems. I suspect that fatigue of the type not induced by heat may be caused by an immune reaction to by-products of cellular metabolism. As the cells of the body do work they excrete waste and they also die off and are replaced. Anyone who has done an unusually hard days work has probably noticed their urine becomes much darker. This is due to cellular debris which is loosened up by the use of muscles. An immune reaction to this waste could explain why some people with MS get fatigued even when there is no increase in body temperature, as on cold winter days.

After a workout I will be more physically limited for a day or so. If it takes me four or five days to get my energy back I know I've exceeded my limitations and I back off a bit. Use your own common sense when approaching your limits. Always work towards your limits or you'll never know what your limits are until they work down to you.

Psynconeuroimmunology (PNI):

It has long been known that negative life events such as the death of a loved one, the loss of your job, moving, etc. can increase the risk of serious illness. Though negative influences can depress the immune system, it is being discovered that positive disciplines can strengthen the immune system, and give a degree of control over the autonomic nervous system. The infant branch of medicine that studies these is called psychoneuroimmunology or PNI. These disciplines include, but are not limited to, bio-feedback, meditation, relaxation, visualization. While there are a few reports of success with MS using PNI the evidence that they improve general health is substantial.

Because of the young age of PNI the literature deals pretty much with cancer research but can offer equal potential with MS and other disease.

Norman Cousin's book 'Anatomy of an Illness' was one of the first popular works that expounded the virtues of positive mental attitude. The Simonton's work with cancer patients and visualization has achieved some remarkable success. Segal, Borysenko and others have written on their use of these modalities and the often remarkable success that their patients have had. Because of the desire and the discipline required these practices are easier to learn than to put into practice.

I've learned transcendental meditation and visualization, and can vouch for the fact that they can both make a great difference to one's physical and mental health. I remember when I was working 16 hours a day I would become so fatigued after two or three hours of hard labour that I could barely stand. When this happened I would lie down for 10 or 15 minutes and do a visualization practice, rising to work another 13 or 14 hours through the heat of the day.

Summary:

While the causative factor(s) remain unclear, it is readily apparent that overburdening a yet undetermined aspect of the immune system causes the disease to progress and/or exacerbate. It therefore stands to reason that the best therapy at this time is to remove as much of the load or burden from the immune system as possible. Because PNI is shown to be a positive, non invasive, adjunct, with no downside or ill effects, it should be utilized by anyone wishing to strengthen their immune system and regain some control over their body. The value of exercise to support these efforts and help people feel more positive about their bodies is well known. Persons with MS would do well to incorporate Russell's ideas into their exercise program.

Be Easy on Yourself: When undertaking to incorporate changes in your life there will be times that what you do falls short of your ideals, you'll fall off the wagon so to speak. Do not berate yourself, just realize what has happened and get back on the wagon before it gets away from you. It will also help to establish relationships which are supportive of your undertakings whether they be friends, family, doctors, or other people with MS It may be necessary to lessen or terminate relationships which are negative towards your undertakings.

Fear and Anger:

As you begin to read about these things that offer people with MS so much potential in controlling or eliminating the symptoms of the disease, you are quite likely to get angry that the establishment you perceived as being the ultimate authority did not tell you of these things. You, not they, are ultimately responsible for your own health. Their ignorance and/or silence amounts to a form of censorship. Get angry, Damn Angry. Use this anger to help you realize that if you want your health you must read, learn and do according to your own judgment.

If someone pointed a loaded gun at your head with the intention of killing you, you would experience fear. An exacerbation of MS also instills fear. Having experienced both I can say that the fear of being shot is a little different, but still pales in comparison to that installed by an exacerbation. Keep this fear in the back of your mind and draw it out every time you are about to stray from the path to better health.

What has been mentioned to this point will prove to be effective for over 95% of the people who have the motivation to do something about their disease. If you lack the motivation and intestinal fortitude to pursue them wholeheartedly do not belittle them with your negative results as you will be robbing others of hope. By offering this information I do not insinuate that nothing else may be of value, only that I believe over 95% of people with MS that are so motivated can control their disease using these modalities. The other 5% need to look further. Many clinics such as those of Nieper, Manner, Bradford, Donsbach etc., offer treatments for MS with various degrees of success claimed. There are also many other therapies such as hyperbaric oxygen, H2 O2, magnetic therapy, snake venom, coloured light, etc. also branches of medicine that offer potential for people with MS such as clinical ecology, orthormolecular medicine, acupuncture, kinesiology, etc.

I would not deny that some people have been 'cured' by diet or religious faith, but I do imply that for most of us the answer may not be that simple.

Most people with MS 'buy' the poor prognosis of the orthodox establishment hook, line and sinker. Most of what has been mentioned here actually comes from what some may refer to as the fringes of the establishment. Not as a second opinion but as what should have been a first opinion. I've invested time, energy and money to learn what I know. I hope my experience has been of benefit to those seeking a sense of direction. Ideally I am hoping that as positive results appear, we will influence other people with MS to do something about their disease. As enough positive results trickle in maybe we can influence the MS Society to investigate and recommend these therapies to people with MS. This would offer hope where now there is none. I have witnessed how the lack of hope can destroy people and their relationships. Hopefully what is presented here will help lift the cloud of despair and hopelessness. I share your sorrow that the answer is not as simple as swallowing a magic pill, but hey, the picture isn't as bleak as the establishment painted it.

I currently have over 35 books on MS. plus many articles from medical journals, periodicals, newspapers, etc. I have read of the best and the worst, but I am always seeking more, to obtain a balanced perspective and to add to the base from which I hope to write a book. If you have materials or personal experiences/ideas you would like to add, all would be greatly appreciated and any duplication will be passed on to other people with MS.

STEVE NELSON

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