AIDS TREATMENT NEWS No. 069 - November 18, 1988
John S. James
Of the 5725 questionnaires sent, 391 were returned by the deadline (October 1, later extended to October 10). This preliminary article reports the number of times each treatment was listed as one of the three best, vs. one of the three worst, in all 391 questionnaires.
Many of the results were as expected, but others were surprising. Some unorthodox and conventional treatments alike did worse than we had expected.
Some of the tabulations below could be misleading; the obvious interpretation may not reflect what is really (continued below)
Table 1. All treatments named more than once in the survey.
| Drug | Best | Worst |
|---|---|---|
| Acidophilus | 4 | 1 |
| Acupressure | 2 | 0 |
| Acupuncture 2 | 1 | 0 |
| Acyclovir 11 | 4 1 | 0 |
| AL 721 8 | 5 4 | 6 |
| Aloe vera | 8 | 7 |
| Amitriptyline | 1 | 1 |
| Amphotericin B | 3 | 5 |
| Ampligen | 2 | 4 |
| Antabuse | 8 1 | 6 |
| Antibiotics | 0 | 5 |
| Aspirin | 2 | 1 |
| Attitudinal healing | 3 | 0 |
| AZT 20 | 4 8 | 7 |
| Bactrim (Septra) 1 | 9 4 | 6 |
| BHT | 2 | 4 |
| Chanting | 2 | 0 |
| Chemotherapy | 8 | 4 |
| Chiropractic | 2 | 1 |
| Coenzyme Q | 8 | 4 |
| Cortisone | 0 | 2 |
| D-penicillamine | 1 | 2 |
| Dapsone | 5 | 9 |
| ddC | 2 | 1 |
| De Veras beverage | 3 | 1 |
| Dextran sulfate 6 | 1 1 | 5 |
| DHEA | 2 | 1 |
| DHPG 1 | 3 | 0 |
| Diet 4 | 0 | 3 |
| DNCB | 3 | 9 |
| Doctor | 2 | 5 |
| Doxycycline | 2 | 0 |
| DTC | 8 | 6 |
| Echinacea | 2 | 3 |
| Erythromycin | 0 | 2 |
| Exercise 1 | 3 | 0 |
| Fansidar | 5 1 | 6 |
| Fluconazole | 3 | 0 |
| Folic acid | 2 | 1 |
| Fusidic acid | 0 | 2 |
| Garlic | 8 | 1 |
| German enzymes | 1 | 0 |
| Germanium | 6 | 2 |
| Gamma globulin | 2 | 1 |
| Ginseng | 2 | 1 |
| Group | 2 | 0 |
| Herbs 2 | 2 | 6 |
| Homeopathic | 5 | 1 |
| Hospitalization | 0 | 2 |
| HPA 23 | 0 | 3 |
| Hydrocortisone | 0 | 2 |
| Hydrogen peroxide | 6 | 6 |
| Interferon alpha | 4 | 7 |
| Interferon beta | 1 | 1 |
| Iscador | 2 | 0 |
| Isoprinosine | 5 | 5 |
| Leucovorin | 2 | 0 |
| Lecithin | 2 | 0 |
| Love | 3 | 0 |
| Massage | 2 | 0 |
| Meditation | 7 | 0 |
| Minerals | 3 | 0 |
| Monolaurin | 4 | 4 |
| Mycelex 1 | 0 | 8 |
| Naltrexone 1 | 3 | 6 |
| Nizoral 1 | 1 | 6 |
| Nystatin | 5 | 6 |
| Ozone | 2 | 1 |
| Pau d'arco | 2 | 1 |
| Penicillin | 2 | 4 |
| Pentamidine (?) 1 | 2 | 2 |
| Pentamidine aerosol 10 | 5 | 1 |
| Pentamidine iv | 4 1 | 1 |
| Positive attitude 1 | 1 | 0 |
| Prayer | 2 | 0 |
| Prednisone | 3 | 1 |
| Propolis | 1 | 3 |
| Protein powder | 2 | 0 |
| Psychotherapy | 5 | 0 |
| Radiation | 6 | 5 |
| Relaxation | 4 | 0 |
| Rest | 4 | 0 |
| Revici method | 2 | 2 |
| Ribavirin | 6 1 | 8 |
| Salk polio vaccine | 4 | 3 |
| Selenium | 3 | 0 |
| Shiitake mushrooms | 1 | 3 |
| Sleep | 3 | 0 |
| Spiritual 2 | 5 | 3 |
| Steps program | 2 | 0 |
| Steroids | 0 | 3 |
| Stress reduction 1 | 9 | 1 |
| Sulfa drugs | 0 | 2 |
| Supplements | 2 | 0 |
| Thymus | 2 | 0 |
| Transfer factor | 8 | 3 |
| Trimethoprim | 2 | 4 |
| Trimetrexate | 1 | 1 |
| Typhoid vaccine | 2 | 1 |
| Visualization 1 | 6 | 0 |
| Vitamins 4 | 7 1 | 2 |
| Work | 2 | 1 |
| Zantac | 2 | 0 |
| Zinc | 4 | 1 |
| TOTALS 111 | 7 48 | 9 |
We will explain some of these potential errors, to warn the reader about the limitations of this survey. It can indicate which treatments seem to be working for people, but must not be taken as gospel.
How We Conducted the Survey
We had intended to enter all the information from the returned questionnaires into a computer database, then select various groups of survey respondents (such as those who did well with one particular treatment but poorly with another), and com- pare these different groups. But many people gave us several pages of comments, or medical information such as lab reports. Often the information they provided was so diverse that there was no straightforward way to process it by computer. So we computerized only the best and worst treatments, miscellaneous questions like medical degree if any and ZIP code, and brief comments. We arranged the forms for easy access by sequence number, so that we can select interesting groups by computer, then collect and examine the corresponding physical questionnaires, in the hope of finding insights into why certain treatments do or do not work for certain people.
Only the 'best' and 'worst' tabulations are available for this preliminary article, however.
Treatment Categories and Names
The following decisions affected the results reported below:
* Treatment combinations. We asked respondents to list com- binations as if they were single treatments. For example, an AZT/acyclovir combination should be listed as one of the best (or worst) treatments, not as two different treatments.
But often there was no clear dividing line between what was and what was not considered a combination. For example, AZT and aerosol pentamidine might be listed together by one respondent, even though they have separate purposes, and listed separately by others.
Another problem is that there are so many different possible combinations of drugs that it is difficult to categorize them meaningfully.
Because of this confusion around treatment combinations, we decided to break combinations apart, and count each drug or treatment individually in the tabulations below -- noting the important combinations here in the text.
Fortunately for the analysis of this survey, only two combi- nation occurred often enough to greatly affect the results:
* AZT and acyclovir was listed 28 times as one of the best treatments, and only twice as one of the worst.
* Persons using food supplements often listed the entire treatment regimen as a combination. We could not analyze this information for this preliminary article, so usually we grouped them as 'vitamins' or 'herbs' in the tabulation.
* Combining related treatments in the tabulations. For this preliminary report, we grouped all 'herbs' together, also all 'vitamins', and all 'spiritual' approaches. Later we will try to report more detail, but this information is difficult to categorize, as each person's combination is often unique.
We did notice that astragalus was named in 6 of the 22 vita- min group, vitamin C appeared 15 times in 'best' and 5 in survey forms for more detail. Other herbs and vitamins were much less prominent in the computerized information we have examined, and we could not get meaningful numbers, at least without scrutinizing the survey forms.
* Aloe vera (8 'best', 7 'worst'); * Ampligen (2 'best', 4 'worst'; the clinical trial also showed lack of result); * Antabuse (8 'best', 16 'worst', probably reflecting side effects); * BHT (2 'best', 4 'worst', too few responses to give a reliable picture, although these numbers suggest that the treatment is not widely used); * DNCB (3 'best', 9 'worst', probably due to side effects, but showing disappointingly few reports of good results); * Hydrogen peroxide (6 'best', 6 'worst', hardly the much- touted miracle cure);
* Propolis (1 'best', 3 'worst', too few to tell anything for sure, but much worse than from the anecdotal reports we had heard); * Ribavirin (6 'best', 18 'worst'); * Shiitake mushrooms (1 'best', 3 'worst'; this result may change when we analyze the herbs more completely).
Other treatments which look good or at least passable in this survey, in addition to the attitudinal and spiritual approaches mentioned above, include:
* Diet (40 'best', 3 'worst'; clearly a major success); * Exercise (13 'best', zero 'worst'; * Stress reduction (19 'best', 1 'worst'); * Garlic (8 'best', 1 'worst') * Coenzyme Q (8 'best', 4 'worst', probably reflecting the fact that it only helps those who have a deficiency); * Germanium (6 'best', 2 'worst', although this result should be taken cautiously, because the drug can make people feel speedy and might improve its 'best' rating for that reason alone); * Homeopathic treatments (5 'best', 1 'worst'); * Naltrexone (13 'best', 6 'worst', and low-cost and harmless); * Rest and relaxation (each 4 'best', zero 'worst'); * Transfer factor (8 'best', 3 'worst', but expensive, given by injection, and not widely available); * Zinc (4 'best', 1 'worst'); and * Selenium (3 'best', 0 'worst', but beware of overdose).
Herbs and vitamins also look good. But as mentioned above, this preliminary report did not count them completely.
881118
ATN06901
Copyright © 1988 - AIDS Treatment News. Permission granted for noncommercial reproduction, provided that our address and phone number are included if more than short quotations are used. Subscription lists are kept confidential. AIDS Treatment News, Subscription and Editorial Office: 1233 Locust St., 5th floor Philadelphia, PA 19107 800/TREAT-1-2 toll-free email: aidsnews@critpath.org http://www.aidsnews.org
Subscription Information: Call 800/TREAT-1-2: Businesses, Institutions, Professionals: $270/year. Includes early delivery of an extra copy by email. Nonprofit organizations: $135/year. Includes early delivery of an extra copy by email. Individuals: $120/year, or $70 for six months. Special discount for persons with financial difficulties: $54/year, or $30 for six months. If you cannot afford a subscription, please write or call. Outside North, Central, or South America, add air mail postage: $20/year, $10 for six months. Back issues available. Fax subscriptions, bulk rates, and multiple subscriptions are available; contact our office for details. Please send U.S. funds: personal check or bank draft, international postal money order, or travelers checks. VISA, Mastercard, and purchase orders also accepted. ISSN # 1052-4207
AEGiS is made possible through unrestricted grants from Boehringer Ingelheim, the National Library of Medicine, and donations from users like you. Always watch for outdated information. This article first appeared in 1988. This material is designed to support, not replace, the relationship that exists between you and your doctor.
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, 1988. 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. .