Variegate porphyria

Editor:

In January 1998, my doctor very kindly insisted on paying a house-call to give me what was to be the beginning of parenteral nutrition. My atrophied stomach had ruptured because I had (and still have) a stricture in the small intestine so it couldn't empty. I was extremely emaciated. She found it very difficult to use a butterfly needle in first one vein and then another, in both arms. As there was no flesh to hold them, the blood vessels would slide from the needle. Their walls had thickened too--a research citation I have explains this phenomena occurs with variegate porphyria. (1) It took quite a time to inject me and she left around 8:30 or 9:00 p.m. About an hour later I went into an extreme intestinal spasm that lasted until 4:00 a.m, in the morning. We both decided the injections would not help me.

Over the next eighteen months I deteriorated rapidly. My heartbeat grew fainter and fluttered frantically when I tried to sleep. It was becoming more and more difficult to breathe; my voice had changed so much people found it hard to hear me. I had to jump on a mini trampoline four times a day to try and move the food through me. I had continual pain. The veins under my extremely swollen feet were bursting and I couldn't reach my feet nor a septic ulcer on my right big toe, because of my immensely swollen stomach. It was becoming too difficult to live. I was waiting and wanting to die.

Then, for the first time, I learned about hypochlorhydria (low stomach acidity) and began taking one capsule of betaine HCL, then two, with every meal. (2) I still felt awful, but persisted. I was taking a Kreb's cycle mineral complex with each meal and used a good wetting agent. I was also using liquid crystalloid electrolytes and know these supplements and others I was taking were helpful, but they were not sufficient to heal me. They were being poorly assimilated because my bloodstream and stomach were still too alkaline and my gastro-intestinal tract was still too damaged. Dr. West's newsletter informed me about the B4 in liver and heart disease. (3) I began to empty nine capsules of predigested Kidney Liver Complex into my mouth four times a day between liquid meals and I held it there for as long as possible before swallowing. I had Enzymatic Therapy's discontinued product. Amazingly, color came back to my face, hands, calves and feet, my heartbeat became regular, my extreme edema began to disappear.

What else could I have used in order to survive? I had been using many well-known, highly recommended products for people with my problems and they hadn't stopped my rapid deterioration. Paul Pitchford, the author of Healing with Whole Foods, encourages his readers to move in the direction of a vegetarian diet. Yet several times he recommends liver or kidney for cases of severe deficiency. (4) On page 123 he is quoting John McMillen, PhD, who worked for more than 50 years in hunger camps, beginning as an assistant to his father in late 1930. He rescued starving Jews in the concentration camps after World War II and worked with the starving people of Africa, SouthAmerica and the Orient. The McMillens determined that spirulina and fish are very helpful in cases of extreme malnutrition. I was using micronized spirulina, but found holding it in my mouth hadn't given me the results predigested organ meat did. I had been using 20 capsules of predigested fish a day for about a year. There was more fish in the capsul es than organ meat in the Kidney Liver capsules, so I was taking approximately the same amount of each. The predigested fish hadn't stopped my devastating decline. Beef liver is suggested by the McMillens on page 124, "since it is fairly low in saturated fat and it contains substantial omega 3s and gamma-linolenic acid. This is particularly true if the animal is range fed." (4) Wild blue green algae and chlorella are suggested too, but they have always caused problems for me. Each time I've tried them they caused porphyria episodes, depleting me further.

It would be far more appealing to abstain from animal products. I love animals and can't remember liking meat ever. But when one is dying and predigested organ meat is the only nutraceutical that turns the case around, it makes one very grateful that there is a solution. Mad cow disease is transmitted from the consumption of animals fed with contaminated animal feed and not from organic, range fed cattle. (5) For this reason I offer this solution to others with hypochlorhydria's extreme vascular and malabsorption problems, emaciation, congestive heart failure and porphyria too. I know I'm not the only one who needs this help. Sometimes there isn't really an option. We forget this when we have not had a similar struggle to simply survive. When we are even minimally healthy, we are free to choose otherwise.

I have tried to understand why this worked while all else failed. Kidney Liver Complex was mainly composed of predigested, defatted liver from range fed cattle. The liver is the organ that stores our nutrients; it makes all the sense in the world to use a range fed animal's liver from a country like New Zealand to restore the body's essential nutrients and to give the liver the wherewithal to do its work. The deficiency diseases of a country like the USA differ from those of starving people. Our deficiency diseases are metabolically induced from extreme toxicity and cellular imbalances. The latter are often exacerbated or can even be caused by mineral and essential fatty acid deficiencies from our consumption of processed fractionated food. The escalating free radical damage our stressful lifestyles and our deficiencies cause, results in such a breakdown at the cellular level that we need to rebuild the cells that are continually being damaged.

Liver contains all the nutrients needed for red blood cell production. (6) My lungs and heart had deteriorated. The Kidney Liver Complex contained a little of each. I don't think it worked only because of my copper deficiency, but also because my bloodstream used the predigested nutrients rapidly. With a hydrolyzed, single milk protein, a fractionated herb, a synthetic antioxidant and certain foods (grains and eggs) I eventually had traumatic allergic reactions. In one instance my legs became so swollen I couldn't bend my knees for almost two years. My depleted body couldn't heal with the synthetic sublingual B complex I'd been taking for over a year, but it was able to heal with the B vitamins contained in the Kidney Liver Complex.

Doctors wisely advise against iron supplementation when the patient has infections and is in a state of general malnutrition, as iron feeds the infections, (6,7) I had life threatening infections and was severely deficient, but am grateful in this one instance for my ignorance. Liver is rich in the most bioavailable iron, heme iron. (8) When the patient is extremely deficient in iron and every other nutrient, a liver supplement can be life saving. (4) But because liver has two or three contraindications, it would be best to seek the advice of a nutritionally knowledgeable doctor before using a liver supplement. Too high an iron level is just as harmful as an iron deficiency. (6)

Many elderly people reach my stage of malabsorption and emaciation, with accompanying heart and kidney problems and frail veins. Experience has taught me there is a simple economical solution for these problems. Far more people are dying daily from hypochlorhydira and its deficiencies than from mad cow disease. Let's not reject good, simple, lifesaving solutions, but rather, find ways to improve them while protecting the animals from contagious disease. By doing so we will be protecting not only each other, but also the very many animals that depend on us.

Judy Kitchen

3637 Serra Road

Malibu, California 90265 USA

Phone/Fax: 310-456-6837

References

(1.) Timonen K, Niemi KM, Mustajoki P, Tenhunen R, Skin changes in variegate porphyria, Department of Dermatology, University Central Hospital, University of Helsinki, Finland, 1990.

(2.) Dr. Tuckey, An Undiscovered Genie, Article from Naturopathic Research Laboratories, Florida.

(3.) West, Bruce, ND, Health Alert, Carmel, CA.

(4.) Pitchford, Paul, Healing with Whole Foods: Oriental Traditions and Modern Nutrition, North Atlantic Books, Berkeley, CA 1993.

(5.) Klotter, Jule, US Mad Cow Risks, Shorts, Townsend Letter for Doctors and Patients, June 2002 #227.

(6.) Balch, James, MD, Balch, Phyllis, CNC, Prescription for Nutritional Health, 3rd Edition, Avery Publishing, NY 2000.

(7.) Gaby, Alan R., MD, Does iron deficiency anemia cause recurrent ear infections? Literature Review and Commentary, Townsend Letter for Doctors and Patients, June 2002 #227

(8.) Murray, Michael, ND, Pizzorno Joseph, ND, Encyclopedia of Natural Medicine Revised 2nd Edition, Prima Publishing, CA 1998.

COPYRIGHT 2002 The Townsend Letter Group
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