EVALUATING THERAPIES

How to Select Therapies

by George M. Carter

A cure for AIDS does not yet exist. As a result, many individuals and companies are leaping into the breach with a wide array of products and approaches. Some of these may have some value; many others, unfortunately, only have value to the people selling them. So before you put anything into your bodyóeven products sold by DAAIRódo some study. These guidelines can help you make a decision about whether to invest your time, money or life in them (some information herein is derived from the excellent review by Armington, 1993/94). The trick is keeping an open mind while not becoming a sucker. Remember, the following discussion can be applied to EVERYTHING from herbs to crystals to pharmaceutical drugs to nutrients to surgery. The bottom line is that making these decisions is not easy. But it can be done.

First and foremost, if you have a health care practitioner with whom you have a good relationship, talk to her or him about your concerns. While many mainstream doctors almost automatically poo-poo alternative and complementary therapies, increasing numbers are opening up to the possibilities. Consult with your health care provider and, where possible, bring to her or him technical questions you may have as you undertake your research. And when necessary, get a second opinion.

With all the hype and lies out there (in both alternative and mainstream medicine), you have to separate the wheat from the chaff. Here are some key characteristics about products or therapies that should send up warning flags:

1) It is THE cure (or gives "miraculous" results). 2) Youíre told not to use any other treatment. 3) The physician (or researcher) is the ONLY one with the answer. 4) It costs a lot. 5) Testimonials are the main source of information about the therapy. 6) The treatment or the practitioner is being persecuted by the FDA or AMA. 7) The ingredients are a secret. 8) It cures every disease known to humanity.

Any combination of these elements should alert you to the possibility of fraud. Points 1, 2 and 3 are truly signs of serious concern. Points 4, 5 and 6 may be legitimate. The following elaborates on some of these points.

1. It is THE cure (or gives "miraculous" results). While it may seem idiotic, some people actually try to bamboozle folks by claiming their therapy is a cure. Sometimes they are even clever enough to provide laboratory proof of so-called seroreversion. Unfortunately, what they are usually referring to is a switch from p24+ to p24- (see the section, How to Monitor Your Blood Work). This is NOT the same as converting from HIV+ to HIV-. P24 protein is a marker of HIV activity in the blood, albeit an extremely poor one. It is a protein found in the core of HIV. Many treatments can help change one to p24-. Unfortunately, p24 as a marker is nearly worthless as a way to assess progression. On the one hand, being p24- is no guarantee you wonít get sick. On the other, being p24+ doesnít mean you will get an opportunistic infection tomorrow. (However, it is one of the constellation of factorsóif only a minor oneóto be considered, along with CD4, CD8, viral load, nutrient status, etc., in developing your treatment regimen.)

Hulda Clark, who maintains that AIDS is caused by a fluke (a parasite) associated with benzene poisoning, claims people are "cured" when taking an herbal preparation. But a closer look shows that her so-called cure is defined merely as a transition from p24+ to p24- (Clark, 1993). To say her regimen is a cure is a lie; to use the p24 criterion as exemplary of a cure is fraudulent. (Noted parasitologists who have reviewed her work note that such flukes are readily identified and would have been seen by now if they existed in all people with HIV. They further note that the photos found in her book are vague and unconvincing.)

2. You're told not to use any other treatment. Sometimes people who sell or hype products tell you that their product is THE thing; use no other therapies. One example of this is the proponents of a photochemical used as a contact allergen called DNCB (dinitrochlorobenzene). Activists in DNCB Now! (also known as ACT UP/SF) attack nearly every other treatment, from nutrients (only to be used in minuscule doses if at all) to herbs to mainstream drugs (only in the last few years has PCP prophylaxis become the notable exception) (Caulfield, 1993). While DNCB may have some therapeutic value, no clinical studies suggest limiting oneís therapeutic regimen to DNCB alone. There is some reason to believe DNCB may help treat KS or to reverse an anergic state (see How to Monitor Your Blood Work in TIP, the part on anergy panels).

To date, AIDS is best managed by a comprehensive, integrated approachóas outlined in the Comprehensive Goalsóthat addresses psychological, spiritual, nutritional, immunological, virological and organ/system needs. So far, as with cancer, diabetes and other chronic diseases, no single agent is the whole answer. Many other "treatment" providers use this tactic to insist that their way is the only way; very often their claims are based on far less data than DNCB proponents.

3. The physician is the ONLY one with the answer. Some therapies may require you to leave the country or travel long distances to stay in a clinic. Investigate these requests thoroughly, demanding as much information as possible from the clinic. Warning flags should rise swiftly if the clinicís physician cuts you off from your own health care provider or tries to isolate you, particularly if he or she claims to be the ONLY one with the answer. If your questions are met with disdain, meanness or evasiveness or if your questions are answered with either confusing, complicated or simple-minded replies, your fraud radar should bleep loudly. Donít let ANYONE try to cut you off from your support group or try to isolate you from input from loved ones, friends, family or other health care providers. Even though a physician may be arrogant or harried for time, you have a RIGHT to ask all the questions and get all the answers meaningful to you, including very specific information on any costs, direct or indirect, associated with any therapy.

Don't hesitate to pester individuals making claims about the product. Ask them what is in it. What is it supposed to do? What are the side effects? Is there any published literature? What evidence do they have for their claims? How much does it cost? What procedures are involved in the therapy (oral intake, suppository, clinic stay, invasive procedures, diagnostic tests, etc.)? What type of monitoring is undertaken? Also, seek out others who may be using the therapy.

Also related to point 4, many therapies that require travel also have hefty price tags associated with them. This was the case with a French clinic Rock Hudson attended and another Swiss company. Any unproved or experimental therapy, especially one with grandiose claims, should NOT be expensive or should be free if part of a clinical trial. You are offering your body and life to test someoneís THEORY that their treatment has some value; you are the one taking the risks. Ideally, a complete informed consent is provided in such studies; read it carefully and be sure to try to get an expert second opinion on it.

4. It costs a lot. One example is hyperthermia. This is the procedure that involves removing your blood, heating it to a level that is supposed to kill the virus and then returning it to your body. It costs about $6000 per session. Unfortunately, the cost is not justified since clinical studies have shown serious dangers and no efficacy (Gilden, 1995). Recently, an FDA-approved study of "whole-body" hyperthermia did seem to show some efficacy with minimal effect on KS lesions and viral load of HIV. However, this is probably not the same thing as the kind that removes and cooks the blood (Steinhart, 1996).

Sometimes costs are high after clinical trials have shown some efficacy. Due to rare ingredients or difficult manufacturing processes, costs may be high. Patents, which allow a company an exclusive right to market a drug, often artificially inflate a productís price. The new class of protease inhibitors, as they are being approved by the FDA, are starting out at high cost (about $16/day wholesale for the low-dose Hoffmann-La Roche drug saquinavir) (Hilts, 1995). While profit is part of the real world, activists object to the obscene profits pharmaceutical companies rake in. ACT UP/NY members did research on corporate profits, which Mark Milano, a longtime survivor and member of ACT UP/NY, reported on in a posting to the Internet newsgroup, sci.med.aids, on October 12, 1996:

"ACT UP/NY recently researched drug company profit margins in comparison to other industries to see if the drug companies' claims that these high prices were essential to fund more research were true. What we found is that the obscene prices of these drugs are used to give drug companies profit margins that are up to 10 times higher than most other industries in the U.S. Here are annual profits, after taxes, of some non-pharmaceutical companies (rounded):

AT&T: 2%
Texaco: 3%
GM: 3%
Chrysler: 2%

And the drug companies:

Abbott: 16%
Merck: 22%
Glaxo: 23%
Astra: 24%
Roche: 17%
Eli Lilly: 22%

As you can see, drug companies make profits far in excess of most U.S. businesses. In fact, the pharmaceutical industry is one of, if not the most profitable legal industries in the U.S."

5. Testimonials are the main source of information about the therapy. Some practitioners will provide patient "testimonials" that serve as evidence for a productís value. Ask the practitioner who these people are. If people are willing to give testimonials, they should also be willing to talk to potential users. Ask to be put in contact with them. For example, a PWA named Erich Benninger was featured as a user of Catís Claw in some literature; he has since died of AIDS. This weakens the case for the value of Catís Claw, especially in the absence of good data.

Find out if the people treated were HIV+. Remember, HIV/AIDS is unique. While it may bear similarities to other diseases (like cancer, chronic fatigue or protein calorie malnutrition), it is absolutely NOT the same. Treatments that may help these may or may not have any value for people living with HIV.

In general, please be wary of testimonials. While a positive outcome from a particular therapy may be cause for hope, just because it works for some does not mean it will work for you. Many alternative therapies that have become "drugs-of-the-month" started out working well for a small number of people, which fanned the flames of hope. Unfortunately, the initial enthusiasm quickly disappears. On the one hand, it may be that the therapy has benefit for only a small portion of people. Or it may be that those people had such a strong belief in the possibility that this belief alone helped improve their condition. This is known as the placebo effect. Some feel this effect should be enhanced while others view it as a confounding variable in assessing whether a therapy is effective. Both views, conflicting though they are, bear a certain amount of truth.

6. The treatment or the practitioner is being persecuted by the FDA or AMA. This is sometimes valid, since the Food and Drug Administration (FDA) has a long history of narrow, sometimes bigoted thinking regarding alternative and complementary treatments. The FDAís response toward non-pharmaceutical interventions is more draconian than when a pharmaceutical is implicated. Unfortunately, this undermines the administrationís credibility.

While misguided or fraudulent hucksters may well use the claim that the FDA (or the American Medical Association) or any group in the "Establishment" are persecuting them, such a claim may be a smokescreen to hide inadequate studies. Nondrug companies sometimes use test tube studies as proof that their product works. At best this is disingenuous since test tube studies have a very limited applicability to real human beings. While FDA condemnation of a therapy should be seriously reviewed since it can be quite appropriate, it cannot be solely relied on as a basis for deciding whether to use a particular therapyóas it may well be an unjust condemnation.

The populations of both mainstream doctors and alternative/complementary physicians have their share of rogues, thieves and misguided fools. This is illustrated by the case of Viroxan, where recipients of the drugs were awarded money for their pain and suffering. A court settlement awarded patients some $2.7 million, but this will not return their lost opportunities (Colker, 1994). Another example from the mainstream world was the testing of fialuridine for chronic active hepatitis B, which destroyed some peopleís livers, killing several people with HIV (Touchette, 1993).

Still, efforts to get studies undertaken of therapies ranging from antineoplastons to marijuana have been marred by schizophrenic government policies that offer resources to conduct studies, while another branch of government (or even a different part of the same branch!) condemns the therapy and ultimately denies resources in the next breath. This is nowhere better illustrated than in the efforts of San Francisco General Hospitalís Dr. Donald Abramsís attempts to conduct a study of marijuana for AIDS-related wasting. He wanted to compare pot against the approved medication, Marinol (which contains a chemical extract from pot). First the FDA rejected his protocol. He tried again and received approval. The NIHís National Institute of Drug Abuse (NIDA) said talk to the Drug Enforcement Agency (DEA). The DEA grudgingly said go ahead. Then NIDA turned around and arbitrarily told another NIH branch (Fauciís NIAID) to review the protocol, and claimed the protocol was inadequate! Considering the many second-rate studies conducted by NIAID, this is an egregious slap in the face.

The bottom line? Be cynical. The FDA and AMA are antagonistic to alternative therapies. This should not come as a surprise. Nor should it play a significant role in deciding whether to use a therapy. FDA castigation is also largely useless UNLESS the FDA claims that the substance is harmful. Then the task is to determine if the risk is real, and, if so, to what degree it is harmful and any risks involved are eclipsed by potential benefit.

As an example, the amino acid tryptophan remains unavailable because some people suffered a terrible reaction, which caused the FDA to remove it from the market. It has since been determined that the disease was caused by a contaminant in a particular batch. Itís like saying that a batch of milk was found to kill some people because it had bacteria contamination, stores should therefore remove all milk from their shelves. Having said this, however, we urge you to take any claims of potential toxicity seriously, and investigate the basis of the claim. Again, this is an area where DAAIR can help.

7. The ingredients are a secret. Still other marketing departments are introducing "scientifically derived" or "ancient tradition" formulae. Very often, the ingredients are secret. The contents are probably herbs or nutrients with some potential benefits (or possible toxicities) and are available from other sources at a fraction of the cost. At worst, ingredients may be harmful, particularly to people with HIV. Never buy products without a full list of ingredients, especially those with unpatentable ingredients. This list should also provide quantities of each item. Given that the manufacturing processes are often secret as well, the possibility of contamination with harmful bacteria or fungi must not be discounted. DAAIR has assayed its products for potency and purity. And activists have long insisted that FDA could well serve the public by spot checks of products for potency and purity. (The whole issue of patents-pending on new products often limits how much companies will say, but even in this case, one should be given a reasonable amount of information about a product.)

8. It cures every disease known to humanity. Kombucha is an excellent example of this. It cures headaches and AIDS and cancer and automatically scratches your back with every sip. Such outrageous hype tends to obscure whatever real value the stuff may have, if any. But again, this is an area that must be approached with caution. Some therapies DO have a wide-ranging impact on diverse diseases (especially if they share a common mechanism of action that may aggravate different diseases). The most important consideration is whether the therapy in question has a value to people with HIV, either because it improves immune function, fights HIV, helps improve blood work that can get out of kilter or resolves symptoms like itching, diarrhea, etc. If there are claims to the effect that people with HIV can benefit somehow, then there must be some literature to back it up.

Seeking Further Information

Once youíve determined whether any of the warning flags apply to a therapy, your next step is to find out more about it. Never rely on a single source for your information (especially not just the sales or public relations people).

Background information:

There are many different sources to try, including local libraries, book stores, HIV treatment centers and clinics and computer online services (the Internet). The types of information you might look for include medical or alternative/complementary therapy journal articles, AIDS newsletters and company-sponsored information materials (which, while probably slanted, can provide you with some insights into what they are all about).

Read! See what your local library has. If you live in an area that has access to an AIDS library, all the better. In New York City, check out the Center for Medical Consumers, 237 Thompson Street (212-674-7105 for hours and directions). Medical information, including much on HIV/AIDS, is arranged alphabetically by plain-English subject headings in large files. They also have the leading medical journals and most health magazines, as well as an inexpensive copy machine. Other AIDS-specific resources in New York include the excellent New York Academy of Medicine or the library at Gay Menís Health Crisis. Other cities also boast excellent resources from Washington, DC; Philadelphia; Los Angeles, and Boston to places like Seattle, Salt Lake City and Pittsburgh. Local public libraries or university libraries often have medical sections, as well as computers that can access Medline and/or AIDSLINE, which are online computer information services offered by the National Library of Medicine of the National Institutes of Health. Unfortunately, mainstream medicine has ignored many alternative/complementary approaches. But it is a first step with possibly more information than you might have expected.

How to read (technical journal articles). When you read articles, especially in medical journals, you may find it like a piece of jerkyótough and dry. This is particularly true of the mainstream journals like AIDS, Journal of AIDS, AIDS and Human Retroviruses, Science, Nature, New England Journal of Medicine, Lancet, Journal of Infectious Diseases, Journal of the American Medical Association, etc. The short cut way is just to read the abstract (the summary found at the beginning of most journal articles) and the last few paragraphs, which are referred to as the Conclusion, or the Summary and Remarks. You might want to tackle the General Discussion section as well. And once you are really good at it and have the basic background, you can tackle the Materials and Methods section. Take note of the name and address of the contact person listed in most journal articles for follow-up questions you may have. If you can afford it, it makes a lot of sense to invest in a medical dictionary such as Taberís, Stedmanís or Dorlandís. Yes, they often use unique words to define the word youíre looking up, but with persistence, youíll start to get the hang of it.

"How to read" can also mean "how to read labels." One must understand with greater and greater sophistication what the labels mean. For example, many vitamins and minerals come in a dizzying array of forms. Which are the best? What forms are absorbed best by the body (the most bioavailable)? The Information Sheets will help you in this task. As a rather sophisticated example, one product may claim to have 300 mg of choline bitartrate, while another touts 250 mg of choline (bitartrate). What you want is the choline. The label that says "choline bitartrate" has about 45% choline. Thus, out of 300 mg, only 135 mg are really choline. The one that says "choline (bitartrate)" with the parentheses indicates that the amount provided is the whole amount of choline in the product (250 mg). This choline is derived from choline bitartrate, too, meaning that if it was listed as "choline bitartrate," it would say 370 mg. Sneaky.

Larger AIDS service institutions, while sometimes erring on the side of being overly conservative (adopting conventional medical wisdom and downplaying or slamming alternative approaches), often have good information provided in their newsletters and other publications. Some examples of newsletters and organizations include the Carl Vogel Foundation in Washington, DC; CATIE and their TreatmentUpdate in Toronto Ontario; Critical Path in Philadelphia, PA; Project Inform in San Francisco; AIDS Project Los Angeles; John Jamesís AIDS Treatment News; GMHC Treatment Issues; the excellent Glossary of the AIDS Research Information Center in Baltimore, MD; various ACT UP chapters around the world; STEP Perspective in Seattle; Being Alive in Los Angeles; BETA from the San Francisco General Hospital, and a variety of other sources. Even if you donít live in or near a big city, you can call or write these institutions and request information. Frequently, they provide newsletters free or at reduced cost to people with HIV. In addition, various buyersí clubs around the country, like DAAIR, have a great deal of information to share.

Online. If you have access to a computer with a modem, you can obtain a variety of information resources on the World Wide Web. (See the Resources Directory for an overview). In addition, there are the "newsgroups"ósci.med.aids and misc.health.aidsóthat can be good resources for questions about therapies. A couple of excellent groups include HIV-SUPPORT (send E-mail to owner-hiv-support@web-depot.com) for people with HIV and COTT-News (send E-mail to cott@web-depot.com) for people with hemophilia and HIV. Many HIV+ are involved in these groups and can share experiences they may have had with the treatments youíre investigating.

With your computer, you can also acquire Grateful Med software ($29.95) and get easy access to the AIDSLINE (free) and MEDLINE services of the National Library of Medicine. AEGIS is an online service that has a full library of many AIDS newsletters (have your modem dial 714-248-2836 or 714-248-0433). Good Web sites include those of the New York Academy of Medicine, Critical Path, ARIC and GMHC. These have links to other sites as well. Addresses for these Web sites may be found in the Resources section.

Talk to people:

Talk to AIDS activists, HIV+ friends, your physician. See if you can get word in the community about a certain therapy. Oftentimes, the community will have much more information (and very often a wide range of perspectives) about novel therapies. You can get in touch with other people through many of the same sources for written information listed above, including AIDS service organizations, support groups for HIV+ people in your area, online computer services and activist groups such as ACT UP chapters.

How Do I Monitor a New Therapy?

Once youíve decided to try a new therapy, you may wish to monitor its effects for a period of time. Since many people with HIV take a wide range of drugs, nutrients and so forth, it may be difficult to figure out whatís going on if you change your regimen frequently over a short period of time. So, if at all possible, in order to assess the impact of this new element in your protocol, stabilize your treatment regimen for about a month before beginning. That is, if you are on antiretroviral therapy, prophylaxis, micronutrients or any other therapy, try to stick with that for about a month. Then add the new therapy. Stick with the new therapy for a period of time while keeping everything else the same. In order for this to work well, discuss your plans with your health care provider.

What Is the Treatment Supposed to Do?

Obviously, you might want to add a new element (or combination) to your regimen for a variety of reasons. Is the therapy supposed to increase T cells? Reduce viral load? Alleviate symptoms such as itching or diarrhea? (See the section on Symptom Resolution). Is it supposed to modify immune function in other ways? For example, does it increase CD8 counts or natural killer cells or perhaps reverse anergy (where your body doesnít respond to things such as the TB tine test)? Or is it designed to improve other blood work like red blood cell or platelet counts or lower triglyceride levels? Write down all the claims made about the product so that once you start, you can see if you are receiving the claimed benefits or experiencing undesirable side effects.

Monitor Your Blood Work.

Try to have basic blood work done before starting a new therapy. Ideally, this includes getting a viral load test, especially if the therapy is supposed to have antiviral properties. Then, after some time on the new therapy, have more blood work done. Pay special attention to any changes in liver or kidney function, triglyceride levels and mineral levels to assure that the therapy is not causing problems. How long should you wait between baseline blood work (the first blood draw taken before starting the therapy) and follow-up blood work? This depends on the treatment you are using. (For more on this, please review the section How to Monitor Your Blood Work in TIP as well as the Symptom Resolution Form.) And, of course, keep a sharp eye on any counts that should be improving with use of the treatment.

Keep a Diary.

You might want to keep a personal diary of your day, listing your regimen, the doses you took, any symptoms you may have had, your emotional state and generally how you feel. You can make a list of your concerns and goals each day and see how you are doing. This may also help you in assuring that you take your meds correctly, in the right dose and the right number of times each day. Again, see the Symptom Resolution and Protocol Forms contained herein to help you out with this.

What About Side Effects? Are There Cross Reactions With Other Things I Might Be Using?

Any side effects you may experience will often occur within minutes of consumption to the first few hours, days or possibly up to two weeks. Immediate response may be the result of a severe allergic reaction. In the case of longer term effects, it may be due to a long "half-life" for some compounds (that means it sticks around in your body long after taking it in). Some therapies can result in buildup of metabolites or other products. (Metabolites are the various molecules formed during the process of absorbing a drug.) Check beforehand to see if the treatment you are on may result in allergic reactions or if there are restrictions on how long it should be taken. (As a rule, DAAIR refers to side effects as negative effects as this is a more appropriate description; indeed, side effects are often poo-pooed by physicians, to their patientsí serious detriment.) (See the sections in TIP on Detoxification.)

With negative effects, keep track of everything. While many therapies have fairly well described potential toxicities and others are virtually nontoxic, it is prudent to keep track of ANY changes in signs, symptoms and blood work. Thus, it is important to monitor for symptoms like headache; dizziness; fever; sweats; diarrhea or constipation; rashes; sexual dysfunction (in arousal or desire); appetite loss; weight loss; visual; hearing or taste disturbances; bloating; flatulence (farting); tingling; pain, or muscle spasms. Does it increase or decrease urine flow? Are there changes in stool or urine color, volume or frequency? While any of these symptoms singly or in combination may suggest an undiagnosed infection that should be PROMPTLY investigated, they may also be side effects of the new therapy, especially within the first week or two of use.

This is true not only because of the problems associated with immune deterioration but also because of the possibility of adverse, novel cross-reactions with other elements of your protocol. This is deeply underscored by the FDA approval of Abbottís ritonavir (Norvir), which has a lengthy list of drugs with which it must NOT be used. These include common, over-the-counter drugs like antihistamines and other chemicals like antidepressants. Taking these with ritonavir could cause serious problems and may have resulted in the death of longtime survivor and Philadelphia AIDS-activist Jonathan Lax.

If any of these symptoms arise and persist for more than a day or two, you might want to stop taking the new therapy to see if this improves symptoms. If they resolve (and they are not severe), you might want to try the full dose again to see if they reappear (this is known as "rechallenging"). Make sure you get the results from diagnostic tests, of course, to rule out an underlying infection causing the symptoms. If the symptoms crop up again, try cutting back the dose by half and see if that helps. Again, however, if the symptoms are serious, do this only under a physicianís care. Maintain a proactive relationship with your health care provider and let her or him know what you are doing.

For some therapies, you might want to keep track of your blood pressure. If it is already elevated, make sure you know whether the therapy in question can increase it further (as with glycyrrhizin). Other therapies, like coenzyme Q10 and garlic, may alter blood pressure.

Is It Working? How Long Should It Take?

From your blood work, you can begin to assess whether the treatment is having the effect claimed. Is it lowering viral load? If so, how much? How about CD4+ counts? Is it having any adverse effect on other cell counts (such as CD8, white or red blood cell counts)? If it is an immune modulating therapy, is it causing an increase in viral load? Are symptoms improving? Is it doing anything at all???

Some therapies may take some time before positive results are seen. In the case of SPV-30, the boxwood extract, improvements in viral load and T-cell count do not generally occur before about 4-6 months. Thus, you must tailor your assessment based on what is known about the therapy. If it is possible for you to stay on one therapy for this long without changing other parts of your regimen, you may find out more about whether a treatment works for you or not.

If Your T-Cell Count Is LowÖ

If your T cells are low, it obviously makes it more difficult to do this kind of assessment, especially given the dynamic way one must deal with HIV infection. You may have to make changes rapidly if infections develop or other problems arise. It is important to make your health your first priority.

If you are taking antiretroviral therapy such as nucleoside analogs (3TC+AZT or ddI+d4T, for example) and/or the new protease inhibitors, you might want to consider three things:

1. These therapies can have an impact for up to a year, possibly longer. This means that once youíve established your regimen, you can add the new therapy (possibly one that improves some other parameters) and follow it for a longer time without necessarily having to change your antiretroviral therapy for six months or more. Thus, you can establish your regimen with a better margin of safety.

2. The downside is that if the therapy you have chosen is one designed to improve CD4 count or viral load, these powerful drugs may well mask any effect of a new therapy. In other words, it may be difficult to tease out any particular difference. Still, you may find improvements beyond what you saw with just the pharmaceutical therapy; that is, there may be a "synergy" of positive effects.

Remember that many natural products inhibit different parts of the virus than pharmaceutical drugs do. Nucleoside analogs work against reverse transcriptase; protease inhibitors work against the protease enzyme. But many antioxidants and bioflavonoids operate by correcting damage caused by the virus and an overly vigorous and damaging immune response. They may also attach various HIV enzymes like RT, protease, integrase, the long terminal repeat and so forth (see the HIV Replication Cycle article in TIP). Such therapies that directly fight HIV include glycyrrhizin, alpha lipoic acid, vitamin E, NAC, whey and several others (see the Information Sheets on these). Also, improved bodily function may afford you additional viral suppression, which means a further slowing in the development of viral mutations. And as a result, this may also lengthen the period during which pharmaceutical drugs are effective. Please see the Detoxification article in TIP.

3. You may want to use nutritional or other alternative therapies that have the potential to offset the known drug toxicities associated with many pharmaceutical treatments, especially combinations of standard antiretrovirals, as well as PCP and other prophylaxes. Some Chinese herbs reportedly improve red blood cell counts (e.g., codonopsis). For another example, astragalus has proven benefits for anyone on chemotherapeutic drugs (antiretrovirals) (see Information Sheet). Other nutrients can significantly offset toxicities. Good examples of this class are coenzyme Q10 and carnitine, which can lessen AZTís documented damage to the most important area of your cells, the mitochondria. Other nutrients, like vitamin B6 for AZT and molybdenum with ddI, help replenish stores that are lost as your body processes these drugs. Please review the Suggested Nutrient Protocol section for more information, as well as the relevant section of your Comprehensive Goals.

It has been shown by several studies that taking a proactive stance in your health care is associated with long-term survival. Asking questions, staying involved and keeping an open mind without being a sucker will enable you to maintain a dynamic approach to your treatment. NIAID director Anthony Fauci has called AIDS a multifactorial, multiphasic, overlapping disease. As such, HIV infection requires a treatment approach that is multifactorial, multiphasic and overlapping. Your active involvement in that process can help improve your odds of being here for the cure.

References:

Armington K. Evaluating New or "Alternative" Treatments, Treatment Issues. Winter 93/94;7(11/12):28-29. Caulfield CR and Goldberg B. The Anarchist AIDS Medical Formulary. North Atlantic Books, 1993. Clark HR The Cure for HIV and AIDS. ProMotion Publishing. 1993. Case histories from p. 121. "Cured when tested on p24." Colker D. $2.7 Million Awarded in AIDS Treatment Fraud, Los Angeles TimesóWashington Edition. (08/01/94) P. B2 Gilden D. Hyperthermia, Treatment Issues. 11/95;9(11):5-7. Hilts PJ. FDA Backs New Drugs to Fight AIDS. New York Times. 12/8/95. Steinhart CR et al. J AIDS Hum Retro. 1996;11:271-281. Touchette N. HBV-Drug Deaths Prompt Restudy of Similar Anti-Virals, J of NIH Research. 1993;(5):33-35.


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