TWISTS OF FATE

While growing up, I always assumed that I was in normal health and leading a normal life.  There was one blip in this pattern when I was six years old and in the first grade.  I became quite ill in October of that year and remained in bed until Christmas. I remember my father bringing the Halloween trick or treaters up to my bedroom for me to see.  There was never any diagnosis, and I gradually improved and returned to school in January.  More recently I was told that I have an antibody for lupus.  Could that have been the problem?  I have no way of knowing; lupus would never have been diagnosed in a child in that time period. 

Years later in 1973, I became severely ill.  It was a long time before I came to understand what the problem was.  I am not able to maintain electrolyte levels (sodium, potassium, and chloride).  It is surprising to realize that physicians did not do routine electrolyte testing at that time.  It was only by the grace of God that I survived.  It took me a number of years to understand what was happening.  I had to determine the problem by myself, because the physicians were no help at all.  They did declare that I was anxious, which is understandable with a person as sick as I was.  But their treatment was tranquilizers which accomplished nothing.  In those days it was "well understood by physicians that women were anxious and hypochondriachal."  They did not do routine electrolyte testing  until 1980, when several women who were on the Adkin's Diet died from low potassium.  After that, Adkins added vegetables to his diet. Until that time it had consisted of nothing but protein.  However, I was not on the Adkins diet. 

I, myself, decided that my problem was a form of diabetes.  It was obvious to me that sugar made me worse.  At first, I thought I would rather die than give up sugar.  However, I just lay there and did not die.  So, I gave up sugar.  I gave up not just the obvious cake, cookies, ice cream, candy, doughnuts, etc., but also bread containing sugar, salad dressings, restaurant food, processed food, cereals, condiments, etc.  I followed a totally sugar free diet.  I did not even eat fruits.  But my improvement was only slight.  I actually was truly having blood sugar problems.  The hospital had done a glucose tolerance test which showed that my blood sugar quickly rose to 225 and then dropped like a rock to 50.  It never occurred to physicians that having my blood sugar drop to 50 would affect me in any way.  Obviously they knew even less about blood sugar problems than I did.  My grandfather and his mother had both died of type two diabetes when they were in their seventies.  I was much younger and very thin, but my system was bothered by sugar.  My family and friends were beside themselves at the thought of someone giving up sugar.  They all viewed sugar as an essential nutrient and were convinced that I would die!  I say this to point out how different the thinking was in the early seventies.  No one could comprehend a diet such as mine.  Some family members were insulted and felt that I was refusing their desserts just to spite them.  That was difficult for me to comprehend, and my views were apparently impossible for them to comprehend.   One friend gave me a candy bar with "no sugar in it."  It was sweetened with corn syrup.  People had no concept that corn syrup was a form of sugar and was used in all candy because it was an abundant and cheap form of sugar.  High fructose corn syrup was not yet on the market. 

Since my improvement from giving up sugar was still minimal, I began studying nutrition.  Sugar drains one of potassium, and I am especially sensitive to that problem.  A friend of my father's gave him a copy of one of Adele Davis' books, Let's Eat Right to Keep Fit.  I studied it carefully and decided that I was deficient in every nutrient, which actually seems to be the case.  It appears that B12 is the only vitamin that I absorb well.  And my absorption of all minerals is very poor.  I have been anemic all my life.  At one point I had been given very high doses of iron to take.  Eventually I developed angina-like symptoms, sharp pain in the left side of my chest and my left arm.  The pain fortunately was brief and infrequent.  When I had finished the prescription of iron the pain never returned.  Later in time I was again given a prescription for high doses of iron and again developed the angina-like pain.  This time I related it to the iron tablets and stopped taking them.  Instead, I took very small doses of iron two or three times a day.  That was more helpful.  Even though I was deficient in minerals I could not take large doses of them.  I tried a large dose of magnesium one day and passed out cold.  I will return to this problem of mineral supplements later to explain what it meant and how I learned to deal with it.

In the meantime, Linus Pauling was promoting vitamin C.  I tried taking several different forms of vitamin C and immediately settled on ascorbic acid and began taking several thousand milligrams daily.  This was quite helpful and I'm grateful to Linus Pauling.  Eventually, years later, I came to realize that I was not producing enough stomach acid due to the problems with chloride (the electrolyte).    I found that a supplement of betaine hydrochloride was helpful in providing chloride for my system.  At this same time, there was a grave threat of nuclear war and people often discussed how to treat radiation poisoning.  Radiation is absorbed by the thyroid gland and causes thyroid cancer.  If the thyroid is sufficiently supplied with iodine then it doesn't absorb radiation.  The preventive treatment is to provide potassium iodide to people who are exposed to radiation.  Governments began stockpiling potassium iodide in order to have it on hand in case of war or nuclear emergency.  It is interesting to note that when the Russian nuclear reactor at Chernobyl had a meltdown no one was given potassium iodide or even notified that there was a problem.  Now there are thousands of cases of thyroid cancer in the areas around Chernobyl.  More recently we experienced the nuclear disaster at Fukushima, and again no one was given potassium iodide or told that they were in danger.  We all need consider these facts and realize that it is up to us to take care of ourselves in these types of situations.  Governments never want to admit that they have a problem!

I noticed one day that the health food store had a new supplement: potassium chloride and iodine in one tablet.  This was probably a result of the nuclear concerns.   I bought a bottle of it and found it helpful.  In fact, the more I took, the better I felt.  At first I thought that the iodine was helping me and that hypothroidism was my problem.  Eventually, after another physician told me that I was in perfect health and there was nothing wrong with my throid, I came to realize that it was the potassium chloride that I needed.  Most stores sell potassium gluconate which is not helpful to me.  I did find one supplement of potassium chloride, which of course, was a very low dose, but I was able to take very large amounts of it and greatly improved.  People say eat bananas for potassium, but I would have to eat more than a hundred bananas a day to even begin to solve my problem with potassium.  And that still doesn't resolve the chloride problem.

I was also having breathing problems while I was going through all of this.  I would say now that "chloride is breathing," or "breathing requires chloride."  The help I received from potassium chloride made me wonder if I had something like cystic fibrosis.  I went to the Ohio State University Medical Library to read the research on cystic fibrosis.  There was no such thing as the internet at this time.  I read a great deal of the research and learned that the main problem in cystic fibrosis is poor utilization of the chloride ion (or chloride).  I then requested a blood test for the most common type of cystic fibrosis.  Of course, it was negative.  I am a hypochondriac.  I continued reading the research and found one stunning paper. 

Someone in Basel, Switzerland, did some very interesting research on cystic fibrosis.  The research compared the mineral absorption of three groups of children: one group of normal healthy children, one group of children with cystic fibrosis, and one group of children with Schwachman Syndrome.  The children were given carefully measured doses of three minerals: iron, zinc, and manganese.  The normal healthy children absorbed a large percentage of the minerals.  (This surprised me.  I had naively assumed that if one took 10mg. of iron, then one absorbed 10mg.)  But no one seems to absorb one hundred percent.  The children with cystic fibrosis absorbed less than the healthy normal children.  But what stunned me was that the children with Schwachman syndrome actually excreted more of the mineral than they had been given!  They had been given a supplement and ended up losing whatever amount of the mineral they already had in their system.  They actually dumped the mineral they were given and more as well.  I had never imagined such a thing could happen to anyone.  This would explain why I had reacted so strangely to the large doses of iron I had been given for my anemia.  It also explained why I had passed out when I took a large dose of Magnesium.  I simply dump large doses of minerals.  Maybe this protects my system from overdoses.  But it's a rather extreme protection.

The children with cystic fibrosis take pancreatin or pancreatic enzymes to improve their absorption of vitamins and minerals.  I began taking pancreatic enzymes and found them very helpful in the absorption of minerals.  I was finally able to take large doses of iron and other minerals and could actually absorb some of it and not have such negative reactions.  Not long ago my physician tested my iron (ferritin) absorption.  My level was 27%.  I hate to think what it had been years ago. 

We think of food as being something that nourishes us and keeps us going.  Much of the so-called food we eat does not nourish us at all.  Instead it takes nourishment from us.   I fasted for twenty years.  That does not mean that I never ate.  It means that I drank only water and ate only nourishing food such as oatmeal without sugar (I baked it like a pie crust in the oven or in an electric skillet).  I ate some fruits and vegetables and baked some whole wheat bread without sugar (my recipes would not win any prizes, but they were nourishing food).  I used more oats than anything else.  Sometimes I had some meat.  I never ate in restaurants; I never ate processed food.  This diet sounds horrifying to most people, but read the book of Daniel in the Bible (Daniel refused the rich foods of the king's table and ate beans and drank water and was healthier than anyone else.).  Or read about manna from heaven.  I didn't actually attempt to follow the example of Daniel or copy manna from heaven, but later on it occurred to me that the diets were similar.

I began a further study of the problems of cystic fibrosis.  Children with cystic fibrosis usually die from lung infections.  Vitamin A is important for normal healthy lung development.  For many years physicians tried to give these children vitamin A.  But the studies of these children showed they had little or no vitamin A in their systems.  I tried taking large doses of vitamin A, but it always made me sick.  So, I would stop, recover, and try again.  Finally I gave up in frustration.  Then it occurred to me that the children usually die.  The physicians in more recent years have switched from vitamin A to beta carotene.  But I did not make much progress with beta carotene either.  I do not take any supplements of A or beta carotene.  I have reached the conclusion that the poor utilization of the chloride ion results in a flawed metabolism of vitamin A.  Beta carotene has to be converted into vitamin A by the liver and then properly metabolized.  Beta carotene is the fruit and vegetable form of A, such as peaches, carrots, broccoli, etc.  Vitamin A, such as that found in milk, cheese, eggs, or liver has already been converted from beta carotene by the animals. But it still has to be properly metabolized by the liver.  I believe that the flawed metabolism of vitamin A, due to poor utilization of the chloride ion, causes fluid and mucus in the lungs.  Infection develops in this fluid or mucus.  Children die from these lung infections. I do not take any supplements of beta carotene or vitamin A.  I limit my intake of beta carotene and vitamin A foods.

Vitamin K is supposed to help the blood to clot in order to stop bleeding.  I believe that the flawed metabolism of vitamin K due to the poor utilization of the chloride ion causes bleeding.  I do not take any supplements of vitamin K.  I do not take any amount of aspirin.  It thins my blood too much. 

Vitamin E is supposed to help to create a sense of well-being.  I believe that the flawed metabolism of vitamin E causes depression.  I do not take vitamin E.  I have suffered from depression.

Vitamin D is important for the nerves of the body.  I think that chromium, magnesium and chloride are required for the metabolism of vitamin D.  Vitamin D has given me peripheral neuropathy in my feet.  It took me too long to understand that magnesium was the mineral I needed to metabolize vitamin D.  I have some residual neuropathy.  I did find that the mineral chromium completely eliminates the pain of neuropathy and also eliminates the problem of loss of proprioception.  Consequently I do not have pain or loss of proprioception, but I do have some numbness in my feet.  The physicians again, of course, had no clue to the cause of my problem.  Magnesium is very difficult to take in large quantities because it simply causes loose stools or diarrhea and goes through a person.  It is difficult to absorb enough magnesium to relieve the numbness. 

A,D,E, and K are the fat soluble vitamins.  For whatever reason, (most likely the poor utilization of the chloride ion) they are a serious problem for me.  I avoid all supplements of these vitamins.  And I limit my food intake of these vitamins.

I never expected my life to take such a turn in this direction.  For a long time I had bitterness toward the medical profession.  But I realize that they can only practice what they know.  And I had the misfortune of being "ahead of my time" or ahead of their time.  Actually, if they had treated me, I might have been worse off. 

What is Shwachman Syndrome?  I was not able to find much about it in the medical manuals.  Apparently it is not even considered a disease anymore.  Maybe it is now simply considered one of the forms of cystic fibrosis.  There are apparently many different genetic causes for cystic fibrosis.  An article written in 1982 states that Shwachman syndrome appears to account for the majority of cases of primary pancreatic insufficiency in childhood, other than those due to cystic fibrosis (if it is something other than a form of cystic fibrosis).  The prognosis is generally quite good though the diagnosis in adults is frequently missed.  Shwachman syndrome was first delineated as a separate entity in 1964.  These children also usually have neutropenia, a reduction in the blood neutrophil (granulocyte) count, often leading to an increased susceptibility to bacterial and fungal infections.  "It seems likely that the true incidence of Shwachnan syndrome has been underestimated." (Gastroenterology 1984; 83:22-7) 

The article about absorption of iron and other minerals (Trace Element Malabsorption in Exocrine Pancreatic Insufficiency, "Monograph of Paediatrics" vol. 10, pp. 8-11, Karger, Basel 1979).

 The original article was written by Harry Shwachman, M.D., Louis K. Diamond, M.D. Frank A. Oski, M.D. and Kon-T Khaw, M.D.. Boston, MA  in The Journal of Pediatrics, November 1964, Volume 65, Number 5.  "The syndrome of pancreatic insuficiency and bone marrow dysfunction"
These children did not develop respiratory tract difficulties and had normal sweat tests. The hematologic features included anemia, thrombocytopenia, and neutropenia.  Attempts to correct the hematologic abnormalities were unsuccessful...  "This condition appears to have a much better prognosis than cystic fibrosis."

Is it something other than cystic fibrosis or is it a variant form of cystic fibrosis?  At any rate I have survived longer than those who have the most common forms of cystic fibrosis.  It has been a long and frustrating search to try to understand the genes I was dealt.  No one else in my family has had the problems that I have had.  Fortunately, my children have not had my problems either, although they have problems of their own.  Apparently no one goes through this life without problems.  In my career as a physical therapist I have seen people with much worse problems than I have had.  That has kept me going.