AIDS TREATMENT NEWS #134, September 6, 1991
John S. James

A closer look shows a core of agreement -- perhaps enough to allow the AIDS community to develop some common framework for discussing the details, and for organizing community action when necessary. It is widely agreed that malnutrition is a very serious problem in AIDS, part of a vicious circle in which HIV disease contributes to malnutrition, which in turn contributes to disease progression. There is considerable agreement on the list of specific nutrients for which AIDS-related deficiencies have been documented. And some areas of disagreement have a fairly clear spectrum of opinion; for example, conservative physicians may use food supplements only sparingly if at all, or only late in disease progression, while more aggressive approaches can include vitamin, mineral, and other food supplements, almost as soon as persons know they are HIV-positive.

There is less consensus on using nutrients to treat particular disease conditions (other than deficiency of the nutrient). Examples of this approach include: lysine, an amino acid used as an "underground" herpes treatment; and garlic, used as an antimicrobial. We suspect that more could be done with nutrients as therapy. Food components are usually inexpensive and available, and often safer than manufactured chemicals, since they have been in the human body for millions of years.

It may be especially important now for the AIDS community to explore this area, and develop consensus on what are and are not reasonable approaches, because of increasing efforts by Federal authorities and others to restrict access to amino acids and other nutrients now widely available in health-food stores. Food components could be engulfed by monopoly medicine, to return years later as pharmaceuticals, at ten to a hundred times the price. The AIDS community must decide if it is interested, and if so, make sure that any restrictions imposed are based on legitimate safety concerns, not on commercial interests or the will to power.

This article provides an overview of some information sources which may be useful. We have not surveyed the field or made any effort to be complete. We expect and welcome suggestions and criticisms.

"Mainstream" Views

* Surviving with AIDS: A Comprehensive Program of Nutritional Co-Therapy, by C. Wayne Callaway, M. D. with Catherine Whitney, 1991, 192 pages, $14.95, Little, Brown and Company, Boston. This short book appears to be an excellent first source for information about nutrition. Dr. Callaway is an internist and endocrinologist in private practice in Washington, D. C., and former director of the Mayo Clinic Nutrition Clinic and the Center for Clinical Nutrition at George Washington University Medical Center; he has worked with people with AIDS, focusing on nutrition, in private practice and with the Whitman- Walker Clinic in Washington, D. C.

Surviving with AIDS is easy to read, and yet should be useful to physicians as well as persons with AIDS. The following section from the introduction explains its purpose and philosophy:

"Surviving with AIDS was born out of the expressed need of both the PWAs and their caretakers. The nutritional program outlined in this book will provide a critical missing link in current AIDS therapies. It is designed as a co-therapy; that is, its effectiveness is demonstrated only when it is used hand in hand with established medical treatments.

"This co-therapy addresses the threefold dietary problem experienced by PWAs: insufficient intake, poor nutrient absorption, and abnormal nutrient metabolism -- and it does so in a highly personalized way...

"The co-therapy outlined in this book is not a 'Band- Aid' solution. Its implications are far more significant. As time goes on, we are seeing more lasting results from nutritional approaches in the treatment of AIDS. There is good reason to believe that we may substantially prolong quality-filled life by developing more rational nutritional support. With this co-therapy, the verdict may be changed from 'fatal disease' to

A major focus of the book is control of diarrhea, often with a low-fat diet, which may be designed for the patient by Dr. Callaway's nutritionist. Treatment may also include "a resin to bind to the bile salts in the intestine and prevent them from being acted upon by bacteria"; examples are the prescription drugs cholestyramine (Questran or Cholybar) or colestipol (Colestid), which are usually used for reducing cholesterol level. Dr. Callaway recommends discontinuing these drugs if there is no improvement within one week. This treatment is not in widespread use; it should be considered by other physicians. Dr. Callaway uses drugs like Lomotil and Imodium only on a very short-term basis.

The book also suggests other nutritional approaches to diarrhea, including checking for lactose intolerance. Non- nutritional approaches, such as treatment of gastrointestinal infections, are mentioned, but the details are beyond the scope of this book.

Many other nutritional therapies are discussed, including treatment of conditions which cause pain when eating or otherwise restrict food intake, and blood tests for specific nutrient deficiencies which can then be corrected.

Lists and tables include causes of pain or difficulty in swallowing, gastrointestinal infectious organisms, immune effects of specific nutrient deficiencies, complications from tube feeding, drug-nutrient interactions, organizations to contact, and books and articles for further information. There are sections on nutritional self-assessment, and special diet instructions for reducing diarrhea, for mouth or esophagus problems, for nausea and food intolerance, for drug-induced nausea, and for loss of appetite. A short food-safety section covers food preparation, restaurants, and traveling. There are over 50 pages of food plans and recipes.

One notable list is five nutritional therapies which Dr. Callaway considers "particularly harmful": macrobiotic diet, vitamin/mineral megadoses, yeast-free diets, the "immune power" diet, and the "maximum immunity" diet.

The book also has a chapter on suggestions for future research, and a reprint of an article by Donald Kotler, M. D., and colleagues on wasting and AIDS. It includes an extensive index and glossary.

Surviving with AIDS is so new that we have not yet seen how it will be evaluated by patients or professionals. It is now appearing in bookstores, but no one we talked to by press time had yet seen a copy.

* Nutrition and HIV Infection, prepared by FASEB (Federation of American Societies for Experimental Biology) under contract for the Center for Food Safety and Applied Nutrition, U. S. Food and Drug Administration, November 1990. This report of over 100 pages consists largely of an extensive literature review of what is known about HIV and nutrition. It is available for $15 (check or money order to FASEB) from: FASEB, Special Publications, Room #2310, 9650 Rockville Pike, Bethesda, MD 20814.

This report is not organized as a practical guide, and will be more useful to physicians and researchers than to most patients. But some "alternative treatment" activists see its publication as important, despite the report's establishment origin, because it brings together the existing scientific justification for various nutritional approaches, and makes the science more accessible than before. We consider the report important for the AIDS treatment community because it will contribute to building the common framework within which nutritional issues can be addressed -- an advance over the previous situation in which many different ideas floated around without talking much to each other, and people often chose nutritional theories according to personal taste and did their own thing independently. A common framework will contribute to research progress, and also to community defense against access restrictions when such defense is necessary. And the only solid authority for anchoring this common framework is the scientific literature.

[And yet it is remarkable how little good science is available in many areas of interest in nutrition and HIV. It is not surprising, perhaps, that a research system which can barely manage competent trials of pharmaceutical products would have trouble with nutrition, which can be scientifically more difficult to study than drugs, while offering less commercial incentive. A cynic might say that animal nutrition (for agriculture) would never be neglected as badly as human nutrition often has been, because animals are profitable when they are healthy, while humans are profitable when they are ill.]

After an overview of HIV infection and of nutrition, the report goes into extensive technical material on the effects of HIV infection on nutritional state. Topics covered in detail include weight loss, body composition, circulating proteins and lipids, deficiencies in vitamins and minerals, and several causes of malnutrition: reduced food intake, drug-nutrient interactions, malabsorption, and altered metabolism.

The next chapter, on the effects of nutritional state on HIV infection, begins with a look at the "striking similarity" in immune deficiency between AIDS, and protein-energy malnutrition caused by inadequate diet. A table shows the immune-system effects of deficiencies of a number of individual nutrients. Clinical effects of malnutrition are then examined; some of the studies discussed documented clinical improvements following treatments to correct particular deficiencies. Nutritional intervention trials, described in a separate subchapter, gave specific nutrients orally or by injection, or by enteral feeding (usually by a tube to the stomach), or by parenteral feeding (usually intravenously).

A chapter on nutrition practices in the HIV community cites research showing that nutrition support is often neglected in hospitals, despite the physicians' intellectual belief that nutrition was important. Ninety three percent of AIDS healthcare providers responding to one survey said nutrition support was important -- but only 44 percent of the hospitalized patients received it. Only 20 percent of the hospitals had a nutritional management protocol for AIDS. Another survey found little use of enteral or parenteral feeding in hospitals, even though patients' weight loss during stays in those hospitals averaged 16 percent.

The same chapter also includes a long list of "unproven nutritional therapies and unconventional diets," usually but not always emphasizing possible toxicity or other problems.

An extensive literature review on nutrition for infants and children with AIDS includes practical advice on food choice, food safety, and enteral and parenteral nutrition.

The report includes a nine-page appendix, "Practical Considerations in Nutritional Management of HIV-Infected Patients." About 400 published articles are cited.

"Alternative" Approaches: Using Nutritional Supplements

The following papers propose treatments which diverge from the mainstream represented above, yet have some scientific support. They tell how to use nutritional supplements, often in large doses -- which many physicians would discourage.

Our own view is that much is still unknown about nutrition and AIDS, and no one has final answers. Our guess is that some of the therapies proposed below will prove to be useful, most will be useless, and some may be harmful; many if not most of them may have quite different effects in different people. During the five years that we have reported on experimental AIDS/HIV treatments, our consistent impression has been that the best strategy, in the absence of definitive science, has been to try rational treatment options, keeping the ones which seem to work for oneself and discarding those which seem not to. The result may be an individual plan which would not work for people in general, but that is OK. It may also contain useless treatments which were accepted because of placebo effect, but that also is no disaster. Naturally it makes sense to choose safer, more conservative treatments when possible.

Earlier in this article we mentioned the need for developing a community-wide framework or overview, based on the medical and scientific literature, to support rational discussion of nutritional therapy options. Such community dialog would help evaluate treatments such as those mentioned below, to decide what is sensible now in view of existing knowledge. The same dialog would help us advocate for the research needed to support better decisions in the future.

The papers described below contain much specific treatment information, such as doses. We chose not to include these specifics here, but instead to give an overview of what each paper covers, and tell how you can get it for yourself.

It is important to discuss any nutritional supplements you plan to use with your physician, because there could be drug interactions or other health reasons for you to avoid certain ones, or to take other precautions.

* Therapeutic Basics for People Living with HIV Infection (7 pages) and Choosing Supplements -- Quality vs. Cost (1 page), both by Lark Lands, Ph.D. Therapeutic Basics is now being revised; we have not yet seen the new version, which should be available by the time you receive this newsletter. The new list of supplements might be different from the one below.

Therapeutic Basics was designed by Dr. Lands to answer the questions people asked her in her role of nutritional consultant. It includes information on a long list of specific nutrients, all but the first in alphabetical order: Multiple vitamin and mineral supplement; vitamin A; acidophilus; ascorbate therapy (vitamin C); vitamin B-6; vitamin B-12 and folic acid; beta carotene or carotene complex; bioflavonoids; blue- green algae; calcium; choline; co-enzyme Q10; copper sebacate; DMG (n-n- dimethylglycine or B-15); vitamin E; essential fatty acids (EFA); glandulars; inositol; iron; magnesium; molybdenum; monolaurin; N-acetylcysteine (NAC); pantothenic acid; quercetin; selenium; and zinc.

Each item has a short rationale, often only two or three sentences, along with a suggested dose. But there is not much information on how to go about deciding which supplements to use. We suggest getting advice from various sources, including one's physician, about these treatment possibilities.

To obtain a copy of Therapeutic Basics and of Choosing Supplements, send a self-addressed stamped envelope to: Carl Vogel Foundation, 1413 K Street NW, 14th floor, Washington, DC 20005-3405, 202/289-4898.

* Joan C. Priestley, M. D., in Los Angeles has developed a protocol of nutritional supplements: vitamin C; vitamin A (beta carotene); vitamin E; NAC; multi vitamin/mineral (Jarrow Pack); quercetin; evening primrose oil; garlic; SSKI (potassium iodide); and B-complex injections. She reported recently on 83 patients who had used this protocol for an average of 13 months. The results appear to be good, with an average decline of T-helper cells of 9.4 during that time, and average weight loss of less than one pound. Eight of the 83 patients have died; six of the eight begin the treatment with an AIDS-defining illness.

Dr. Priestley does not recommend AZT, although some of her patients use it. Her advice differs from the mainstream in other ways also. We are not able to evaluate her program, and do not have recommendations for or against. We sought out Dr. Priestley because she has followed the research on HIV and nutrition, a subject most physicians have overlooked.

To obtain a copy of Dr. Priestley's protocol on nutrient therapy, send a self-addressed stamped envelope to: Joan C. Priestley, M. D., 7080 Hollywood Boulevard, Suite 603, Los Angeles, CA 90028.

* Donald E. Knapp, a long-term AIDS survivor in San Francisco, has published HIV -- Nutritional Support, a six-page writeup on the nutritional program he has developed for himself and recommends for others. He discusses how to pick a good vitamin and mineral supplement, on both a moderate and low budget. He also strongly recommends additional use of six nutrients: beta carotene; vitamin C; vitamin E; iron; lysine; and zinc. Total cost of the program is about $150 to $250 per year.

For a copy of HIV -- Nutritional Support, send $3.00 ($2.00 if limited income) to: Don Knapp, 3677-A 19th Street, San Francisco, CA 94110. In San Francisco, the paper is also available at A Different Light Bookstore, and at Rainbow Grocery.

Comment

The varied and often contradictory nutrition advice from different specialists shows the confusion prevalent in nutrition today, and the limited areas of widespread confidence and agreement. There are many different schools of thought even within the community which accepts the published scientific literature as its best available authority. More dialog between the different viewpoints -- as well as attention from mainstream physicians, and increased scientific research -- will help reduce the confusion and improve the advice available.

910906
ATN13401

AEGiS presents published material, reprinted with permission and neither endorses nor opposes any material. All information contained on this website, including information relating to health conditions, products, and treatments, is for informational purposes only. It is often presented in summary or aggregate form. It is not meant to be a substitute for the advice provided by your own physician or other medical professionals. Always discuss treatment options with a doctor who specializes in treating HIV.

Copyright ©1980, 1991. AEGiS. All materials appearing on AEGiS are protected by copyright as a collective work or compilation under U.S. copyright and other laws and are the property of AEGiS, or the party credited as the provider of the content. .