AIDS Treatment News #163, November 23, 1992
Dave Gilden

Each individual seems to require a minimum store of protein to support life. There is an increasing awareness that death among people with AIDS frequently occurs when that limit is approached. People with AIDS may be dying from a process similar to starvation. Many generalized symptoms of advanced AIDS, including lack of energy and decreased ability to concentrate or cope independently, could arise from tissue disintegration caused by a loss of protein stores.

The chronic, progressively debilitating aspects of AIDS and HIV infection require treatment as much as do the acute, life- threatening opportunistic infections. The two are interrelated. Ensuring proper nutrition is not just a matter of eating the right foods. It is a complex task requiring, among other things, management of illnesses, mental attitude and drug interactions. Sufficient physical exercise is also necessary to maintain or recover body composition.

We spoke with Cade Fields Newman, M. S., R. D., about the multifaceted nature of nutritional support and its potential benefits. Ms. Newman is the founder of The Cutting Edge, a nutritional consulting firm in Fremont, California that specializes in advising patients with HIV. Besides working with individual doctors, she is currently organizing a nutritional assessment service for the Physicians Association for AIDS Care (PAAC). It will supply member physicians with an evaluation of the nutritional status of their patients and recommend ways to control nutritional deficits and wasting.

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ATN: How important would you say proper nutrition is?

CFN: Well, if I said I had a drug that would extend a patient's life two or three years, that would improve their quality of life, that would keep them in a situation where they could provide their own care and keep them working, you would think people would be flocking to it. Yet, we do have that; it's called "nutrition." Although not a stand-alone therapy, it is a very important part of overall treatment. And in conjunction with all the other things that are done, I believe that we can start dealing with HIV as a chronic manageable disease, where a person can live a normal, quality lifespan.

ATN: It seems obvious that the earlier one starts a nutrition plan the better. Once you become sick and lose considerable amounts of weight, it will be hard to recover. So, where does one start?

CFN: Yes, prevention is absolutely key for a person to have this vague thing called quality of life. But nutrition is not even a good stand-alone therapy to support nutritional stores. What is required is a strong partnership between patient and physician, hopefully with a multidisciplinary team's input. The patient has to be captain of a team. For instance, I'm a dietitian, but I cannot solve swallowing problems. You may need a speech therapist to evaluate that. Or there might be a problem with peripheral neuropathy and carrying out the tasks of daily living. Then, an occupational therapist should come in, or if there are problems with range of motion or movement, a physical therapist. There should be a pharmacist to advise on the effects of medications on nutrient utilization. Also, there are the nurses. Patients see them more than anyone else, especially home-care patients.

All of us are simply advisers. It's the patient's choice. It is very important that they can assemble this team and that it does what they want. Otherwise people get advice on nutrition from persons who do not have access to their medical records. There is no way such persons can put together nutritional advice that matches that person's individual medical profile.

ATN: But nutritional advice is not all that common at a physician's office. Most doctors don't have much nutritional training. How common is this ideal sort of team that you are talking about?

CFN: It varies from place to place. It occurs when you have strong-minded, assertive patients who insist on it. It's a growing phenomenon. A lot of us talked about team work for years without doing anything about it, but now patients are insisting on it.

The doctor has to be in tune with what's happening. If the patient cannot maintain adequate nutritional stores, then medical therapies will fail. Drug therapies depend on your protein stores, for instance on your serum albumin to carry that drug where it needs to go. Oral drugs depend on your ability to absorb. That, too, is based on nutritional status. At least, primary care physicians need to monitor overall treatments to make sure that they do not conflict. That cannot be done unless people are working together as a team.

ATN: I want to talk about what this team will advise in nutritional support. But first can we briefly describe the sources of inadequate nutritional balance in HIV infection and AIDS?

CFN: There are three major reasons for malnutrition in HIV- related disease. The first is decreased intake. That could be because of anorexia -- just a lack of appetite -- which could happen with depression or some of the drug interactions, a number of different things. The second part of this is malabsorption, which happens quite often with HIV-related diseases in the gastrointestinal track. These two considered together would be reasons for the body to starve.

Besides this, the inflammatory response of the body to HIV uses up protein stores in muscle tissue. This creates a major risk for malnutrition. Also, the altered metabolism of nutrients allows a person to hold onto and even generate fat stores while maintaining or building lean tissue is difficult.

Nutrient transport within the body may also undergo alterations. For instance, in a number of patients with advanced disease, there are indications of an iron deficiency although there may be other signs that there is plenty of iron. It looks like iron is not going where it needs to go, and just supplementing with iron is not going to help.

The picture is much more complex than not getting enough food or malabsorption, and that's what makes nutritional intervention so difficult. Often we talk about this particular chemical in the body doing that particular thing, but there may be many different metabolic pathways that have to be set right.

ATN: OK, so let's start at the simplest level. What are the first steps an asymptomatic person with HIV should consider for nutritional intervention?

CFN: Well, I know it's not hi-tech, but food is going to be the best thing a person can do. When we second-guess nutrition and try to package it into little things to give people, we sometimes get into trouble. Food has many substances in it that we don't know much about and that might be very important.

If I were to prioritize what a person needs, the number one priority would be fluids because without adequate hydration, nothing works. The second priority would be calories, because without enough energy it doesn't matter what you are getting in terms of protein. It will not go where it needs to go. The third priority is protein, and the fourth priority is vitamins and minerals, which cannot be used by the body without the first three.

ATN: It's important to stress that problems with food intake might be problems with energy -- not preparing food or feeling energetic enough to eat.

CFN: Absolutely. You need to figure out for each person what they need, what they're getting, and strategies for getting it. And when they're having a bad day, they should have a stash of food on board. Many people do not have that, and when they go through two or three bad days, they get behind. At least if they had a supply of food supplements, even instant breakfast, they could get through better.

Cooking can be very energy-draining; don't feel strange about asking for help. If someone wants to cook for you, let them do it. Nutrition covers quite a span. Sometimes we get so caught up in the biochemical changes in the liver, when a simple chair in the kitchen or a better pair of eyeglasses would make the biggest difference.

For a person who is completely asymptomatic, a basic piece of advice is to learn fundamental nutritional principles. Learn how nutrition interacts with immunity -- from a serious source, not from some popular magazine. Food safety -- proper storage, cleaning and cooking -- is another very important skill to learn. There are a number of opportunistic infections that could be prevented if food safety were higher on people's lists.

ATN: Isn't there data that you should start collecting to check on your nutritional status?

CFN: Yes, you should develop some individual strategies you can put together to make sure you are getting what you need on a day to day basis, but you should also develop a good contact that will answer your questions and monitor your body composition every six months. Weight is not a good early indicator; its loss shows that a lot of things have already happened. It is very important to get baseline data so you can know what the trends are in mid-arm circumference and triceps skinfold [a measurement of fat stores] and so forth. These measurements reveal more than weight alone does about the present state of body composition.

You also need to monitor medical therapies. Many people are taking many medicines. Drug interactions with the body, such as nausea, vomiting, diarrhea, and toxicities to liver, kidney and pancreas, can put you at risk nutritionally Another factor to monitor is markers of nutritional status. Albumin in the blood is a good general indication of the state of the body's protein stores, although infections can make this go down without any relation to nutrition.

ATN: Are there specific nutrients that you would suggest emphasizing in the diet?

CFN: I would concentrate on a nutrient-dense diet. This means that calorie per calorie you get a good amount of the other things you need, like protein and vitamins and minerals. Your priorities are still fluids, calories and proteins, and then micronutrients [vitamins, minerals, etc.]. Most people ask about vitamins, but you need the first three to get any benefits at all from the last one. I would concentrate on fluid-containing, calorie-containing and protein-containing foods and then make sure I got adequate micronutrients.

A group from the University of Miami in Florida did recommend some very specific things in regard to supplementation [M. K. Baum and others, "Interim Dietary Recommendations to Maintain Adequate Blood Nutrient Levels in Early HIV-1 Infection," VIII International Conference on AIDS, Amsterdam, July 19-24, 1992, abstract #PoB3675]. In early HIV infection, increased intake of zinc and vitamins B2, B6, B12, A [or beta carotene equivalent], C, and E, on the order of six to 25 times the RDA [depending on the nutrient; more than six times for some of them could be harmful. See full report in M. K. Baum and others, "Influence of HIV Infection on Vitamin Status and Requirements," ANNALS OF THE NEW YORK ACADEMY OF SCIENCES, volume 669, pages 166-174], was found necessary to maintain adequate blood levels of these substances in some patients. We don't know yet how helpful normalizing these values is going to be. This is just an interim recommendation. But we have seen people improve cognitive function by normalizing B12 -- an important nutrient to pay attention to if there is a decline in its level. Similarly, B6 seems to be important in protecting against neuropathy, although an overdose of B6 also causes neuropathy.

A generic recommendation would be just to eat adequate foods and from there add a multivitamin maybe once or twice a day. You have to be careful about what you're taking. Nutrients, like drugs, can be very toxic, especially for people with HIV. A number of HIV-positive people may already have problems with chronic hepatitis or other organ infections. If you have liver or kidney dysfunction or any pancreatic dysfunction -- maybe you have been on ddI -- nutrients are not metabolized in the normal way. And a number of drugs are toxic to the liver. This adds to the potential compromise and toxicity when you take something like vitamin A.

ATN: Do you favor other special dietary supplementation?

CFN: If a person cannot take in enough calories -- maybe there's a problem with swallowing or someone just cannot fit in the nutrients they need -- you can go to the calorie-packed liquid supplements. You can use those to augment nutrition, preferably, and in some cases replace whole meals. Stocking up on these oral supplements is another way of preparing for bad days.

A different kind of supplementation is exercise. Regular exercise is highly beneficial. Also, if you want or need to gain weight, then you need to do so along with exercise because padding yourself with fat is not particularly helpful. If an opportunistic infection occurs, you need protein stores to resist it and make your drug therapies work.

There is a high correlation between muscle mass and clinical well-being. Protein makes the body function; immunity is based on protein stores, too. And exercise promotes protein formation in tissues throughout the body. Here, resistance exercise, like body building, is more important than aerobic exercise.

Another strategy that promotes protein-building is regular, frequent meals. One study found that people who eat at least four times a day, including a snack an hour or so before sleeping, did better in terms of nitrogen balance than anyone who ate less than four times a day. Fortifying protein stores should be a central preparation for coping with AIDS.

ATN: When severe immune deficiency does come about, what are the issues then?

CFN: Most people who lose weight in conjunction with an opportunistic infection have a hard time gaining it back, if they ever do. And when they do gain it back, they may not gain back the protein stores they need, just fat and fluids. This is the central problem.

ATN: Aren't there ways to recover?

CFN: Yes, there are four strategies for regaining lean body mass, and nutritional support is only one of them. The first defense is prompt and effective treatment for opportunistic infections when prophylaxis fails. We can prevent much malnutrition by stopping the cascade of events surrounding opportunistic infections.

The second line of the defense is hormonal modulation and anti-inflammatory therapies. Some patients have low testosterone levels, for example. By replacing that, you can maintain or increase lean body mass because that's one of the effects of testosterone.

Elevated cytokines, such as some interleukins, have been proposed as causing the wasting effect. I'm not so sure that anti-cytokines will prove to be a good therapy by themselves, but perhaps they will be helpful in conjunction with other treatments.

Anti-inflammatory agents abound. You have to be careful to block the harmful aspects of inflammation, those that drain protein stores for energy, and not the beneficial ones. Simple aspirin and fish oil reduce the level of inflammatory prostaglandins to give the body an opportunity to recover lean tissue. Fish oil may be more effective earlier rather than later, though.

ATN: You mentioned how important exercise is early stages of disease, but does it have an effect later on, when movement is harder? CFN: Yes, exercise is the third defense strategy. It is still important in protecting body composition or gaining back lean body mass after you have lost weight. It's tough when you are experiencing a lot of fatigue or physical limitations, but there are people who can put together exercise programs even for those who are in wheelchairs.

ATN: And nutritional support is the fourth strategy?

CFN: Finally, we come to ensuring an adequate diet. In AIDS, a host of opportunistic infections affect eating. We mentioned aspirin before; that and other anti-inflammatories are also used for pain management. Pain management is an issue that is not fully addressed for many people with AIDS, and it can be key, not only for overall quality of life, but also for the ability to eat.

Just about everybody with AIDS will have diarrhea at some point, despite attention to food safety. Treating the underlying cause of diarrhea, if possible, is the most effective course of action. Also, anti-diarrhea drugs may be combined with nutritional strategies. Fasting during episodes of diarrhea is not recommended. Emphasizing sources of soluble fibers (such as bananas, oatmeal, applesauce and potatoes) while removing sources of crude fiber and maintaining an overall balanced diet is more appropriate. Replacing lost fluid and electrolytes, especially potassium and sodium, is crucial.

ATN: Rehydration and electrolyte replacement can take place intravenously as well as through the diet. Eventually, simple dietary techniques may not be enough to provide sufficient nutrition. Liquid food supplements can be added when someone cannot or does not take in enough food for whatever reason. Feeding through a tube to the stomach also has its place in people physically unable to eat. But in the extreme case, there is parenteral feeding (through a catheter attached to a vein), which avoids the GI tract entirely. What role does it play?

CFN: Partial or total parenteral nutrition can help people get over the hump when disease causes extreme malabsorption. It is necessary to start early, though. Don't let people not eat for three to fourteen days before introducing parenteral nutrition.

Parenteral nutrition does not have to be permanent. People feel that if they go on TPN [total parenteral nutrition], they're stuck with it forever. That is not true. In certain diagnoses, such as CMV colitis, people may be maintained on TPN throughout their lifetime. Even then, they can modify oral intake and in some cases reduce their dependency on TPN.

The second point I would like to make is that aggressive support does not equal TPN. You can be aggressive with peas and carrots and palliative with TPN. To find out what the appropriate support is, the patient can be clinically profiled into diagnostic sub-groupings. For instance, if the person is experiencing some depression and is adequately absorbing nutrients, they may simply need to focus on "maximizing food intake," by eating nutrient-dense foods.

ATN: What about using Megace [synthetic progesterone] or Marinol [synthetic THC, the active ingredient in marijuana] to stimulate appetite?

CFN: Marinol seems to work well for nausea, and some patients prefer it for increasing appetite. Some people complain about feeling drugged out, though. Some say that smoking marijuana works better. It's quicker, and avoids their queasy stomach. But the smoke can present a problem, especially for those with respiratory infections.

Patients on Megace tend to gain fat, according to studies using therapeutic doses of 800 mg/day. Many people use a lot less than that. It has been speculated that a slow weight gain associated with lower than established therapeutic doses may include more lean body mass. When used with people who have a mechanical or pain reason not to eat (rather than reduced appetite), Megace may be detrimental through increasing the desire and not the ability to eat.

In advanced HIV infection, you may have "futile cycling" of fat going on, where fat stores are broken down in the liver and then rebuilt by the liver. This wasteful process results in consumption of body protein for energy. If you throw rehabilitative levels of calories at someone in this state, you may just get more fat and not the protein stores that are needed.

ATN: Appetite is closely tied to mental outlook. And mental outlook can be impaired by not eating. This brings up the relation of mental health support to nutritional therapies.

CFN: Help in avoiding depression or handling stress becomes more and more necessary as HIV infection progresses. It is key to motivating HIV-positive people to follow other therapies. Again, nutritional support, like medical support, will not be most effective all by itself, as a stand-alone therapy.

ATN: Also, speaking of specific substances like Megace or Marinol, I notice we haven't spoken much about specific vitamins and minerals later on in the disease.

CFN: The significance of vitamin and mineral deficiencies are not well established. Other micronutrients that we look at besides the ones mentioned before in connection with the University of Miami group include selenium and folate. One doctor I know has had good results improving patients' quality of life with magnesium supplements. But micronutrient deficiencies seem to be geographically dependent. Some of this has to do with the minerals in the local soil. A major factor is the variation from place to place in the way physicians treat AIDS. Drug interactions have a large influence on micronutrient absorption and utilization. For example, pyrimethamine and trimetrexate, which are used in treating toxoplasmosis and pneumocystis, interfere with folate metabolism.

ATN: So, when taking vitamins and minerals, you have to understand the roots of the deficiencies?

CFN: Oh yes. Blood indications of low iron may not be resolved by iron supplementation if it is really a cellular level nutrient transport problem due to low protein stores.

You need to see what is best for the patient. If micronutrient levels normalize, is that valuable, or are other things going on that are still disruptive? Again, addressing problems that may cause alterations in nutritional, and specifically micronutrient, status may be most effective.

ATN: Where patients find reliable information about nutrition, and learn more about the full potential for dietary changes to modify disease progression?

CFN: Patient information is available through a number sources. To get a listing of educational pieces designed for HIV patients you can contact the National AIDS Information Clearinghouse at 1-800-458-5231.

To find dietitian services for evaluation and counseling, request a referral from your physician. The next step is to locate a dietitian who has training and experience in HIV-related nutritional issues.

Also, contact major city public health departments and ask for phone numbers of AIDS nutritional networks. In the New York area, you can contact Nutritionists in AIDS Care at 212-439-8073. Arizona, California and other states have networks as well. Several AIDS support agencies have added dietitians to their staffs, including the San Francisco AIDS Foundation, and Bronx AIDS Services. Local home meal delivery services can also be a place to start.

[Note: To contact HIV nutrition specialists at The Cutting Edge, the organization founded by Cade Fields Newman, call 510- 797-9768.]

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