Subject: Hypericum, Dextran Sulphate, Conferences Date: Aug 26 1988 (828 lines) &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& J O H N J A M E S writes on A I D S &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& copyright 1988 by John S. James; permission granted for non-commercial use. Articles by John S. James are from AIDS Treatment News unless otherwise indicated. John may be contacted by telephone at (415) XXX-XXXX. AIDS TREATMENT NEWS issue # 63, August 26, 1988. CONTENTS: [***** appears here at each new item] Hypericum: Common Herb Shows Antiretroviral Activity Medical Virology Conference, San Francisco September 22-24 Stanford: Nutrition and AIDS Conference, September 10 Dextran Sulfate Side Effects San Francisco: Chinese Medicine Program for Seropositives Tom O'Connor on National Tour Washington DC Demonstrations, Conference October 5-13 San Francisco: CRI Project Needs Administrator AIDS Treatment Survey: You Can Help ***** Hypericum: Common Herb Shows Antiretroviral Activity by John S. James A chemical in a common plant used in herbal medicine (St. John's wort), and previously tested in humans as an antidepres- sant, has been found to strongly inhibit retroviral infections in animal and laboratory tests. Researchers writing in the July 1988 Proceedings of the National Academy of Sciences (abbreviated PNAS) suggested that hypericin, an active ingredient found in plants of the Hypericum family, commonly known as St. John's wort, might become a useful AIDS therapy. The fact that the drug can be given by mouth, has already been used in humans, and is found in a widely available plant customarily used as a medicinal herb and sold at little cost, suggests that this treatment possibility might also be developed through the herbal and alternative-treatment traditions, avoiding the years of delay built into mainstream pharmaceutical develop- ment. But the herb must be used carefully, because large doses have poisoned grazing animals when they fed on it, and because many questions about its possible use as an AIDS treatment remain unanswered. No human trials for HIV have yet been conducted. We have heard through guerilla clinic sources that several persons have started using the herb for this purpose, but they started only a few days ago, so it is too early to see any results. Antiviral Tests of Hypericin The July PNAS article (Meruelo and others, 1988) gave a detailed account of tests of hypericin against two retroviral diseases of mice. (A closely related variant, "pseudohypericin", is also found in the herbs and has similar antiviral effects; this article will use "hypericin" to refer to both chemicals.) Most of their research did not use HIV, presumably because this virus does not cause diseases in animals, preventing direct animal tests of HIV treatments. Also, there is a serious shor- tage of laboratory facilities set up to work with HIV. But researchers are increasingly interested in testing possible AIDS treatments in the "animal models" which are available -- animal diseases caused by retroviruses, such as feline leukemia in cats, or the mouse retroviral diseases used here. Meruelo and colleagues did mention that preliminary labora- tory work showed that pseudohypericin could reduce the spread of HIV. Most of the testing reported in the July PNAS article used the Friend leukemia virus (FV) in mice. A single small dose of hypericin, given up to one day after the injection of the virus, completely prevented the rapid development of disease and death. Long-term survival, for at least the 150-day period of the exper- iment, was 44 percent for the treated animals, while all the untreated animals died before the 25th day. No virus could be found in the infected but treated mice. Also, there was no enlargement of the spleen in treated mice ten days after infection, while the spleen was several times the nor- mal size in untreated mice at that time. The researchers found no toxicity or side effects from the small treatment dose -- even though they ran a panel of 25 blood tests to look for toxicity. In this study, the hypericin was given by injection -- a more precise way to administer a drug than orally, and more con- venient in animal tests. But oral administration also proved effective. Hypericin and AZT The exact mechanism of antiviral action of hypericin is unk- nown. But Meruelo and colleagues found that it had no effect against reverse transcriptase, meaning that it works by a dif- ferent mechanism than AZT. This finding suggests that hypericin might work well in combination with AZT. An earlier published study, cited by Meruelo and colleagues, showed that AZT alone protected mice from FV infection. But the AZT had to be given repeatedly, at doses highly toxic to the animals. Hypericin suppressed the virus with a single small dose, without toxicity. What about treatment after disease has already developed? Meruelo and colleagues administered the drug early -- up to one day after exposure to the virus. But their paper mentioned unpublished, apparently preliminary work in which "combinations of hypericin/pseudohypericin with (AZT) have been found remark- ably effective in curing mice from FV-induced leukemia at concen- trations and frequencies of administration in which each of the two drugs separately was ineffective". Human Therapeutic Experience: Medical and Scientific Papers No human study of antiviral effects of hypericin has been published. But there is safety information from at least four decades of testing Hypericum extracts in humans, as an antidepressant and antibiotic. Some of this research suggests that there may be antibiotics or antivirals other than hypericin in the plant. Meruelo and others cited a 1949 article on antidepressant use in humans. Several more recent articles have been published, mostly in German and Russian; see references below for a partial list. Medical Hypericum extracts may be available in Germany, the Soviet Union, or other countries, but we do not have details at this time. (West Germany has nearly twice as many approved drugs as the United States.) Herbal Use We examined several herb books with information about Hyper- icum. The books were: John Lust, The Herb Book, Bantam paper- back, 1974; Mrs. M. Grieve, A Modern Herbal, Hafner Publishing, New York, 1967; Michael Weiner, Weiner's Herbal: Guide to Herbal Medicine, Stein and Day, 1980; and Paul Schauenberg and Ferdi- nand Paris, Guide to Medicinal Plants, Keats Publishing, Inc., New Canaan, Connecticut, 1977. Different plant species have been studied. All the herb books, and most of the scientific papers on hypericin which we found by a computer search, used Hypericum perforatum. But Meruelo and colleagues extracted hypericin from Hypericum tri- quetrifolium Turra -- a different species in the same family. The readily available Hypericum perforatum is also known to contain hypericin. It is hard to summarize the traditional medical uses of this herb (commonly called St. John's wort), because different herb books list different uses. Antidepressant and related applica- tions predominate. Most but not all of the herb books warn readers about the potential toxicity of the plant. Toxicity All sources we have seen referred to only one form of toxi- city of St. John's wort: that excessive doses makes the skin abnormally sensitive to light. Such "photosensitizing" is a side effect of various drugs. Meruelo and colleagues cited reports that in livestock exposed to very high doses and intense light, the reaction can be severe or even fatal. But in their test of hypericin with over 800 mice, they found no serious toxicity. And toxicity has not prevented human use of herbal extracts as an antidepressant. Weiner's Herbal recommends against internal use because the plant contains hypericin, and light-skinned persons can suffer dermatitis, burning, and blistering of the skin if exposed to sunlight after using the herb -- depending on the amount ingested and the amount of sunlight. John Lust's The Herb Book warns that St. John's wort has poisoned livestock and can make the skin sensitive to light. But it does include the herb in a number of combinations for medici- nal teas. It would seem prudent for anyone trying St. John's wort to stay out of the sun. Sunscreens have been prescribed for patients taking other photosensitizing drugs. One well-regarded herbalist, reached shortly before press time, told us that despite earlier concerns about St. John's wort, the toxicity seen in grazing animals has not been a problem in humans. He believed that the difference was due to the very different stomachs of ruminants. We have been unable to find any published reports of cases of human toxicity; however we have not obtained a number of papers on the herb, so such reports might exist. Our main concern is that herbal preparations can vary greatly in the amount of active ingredients they contain. Stand- ardized preparations and careful medical monitoring will be needed to determine safe and effective doses (if any) for persons with HIV infection. Fortunately the chemical properties of hypericin suggest that herbal extracts should be easy to prepare, test, and standardize. Chemical Properties of Hypericin The Merck Index gives the following information: * Hypericin decomposes at 320 degrees C. (Therefore it will not be harmed by the heat of boiling water if prepared as a tea.) * It dissolves in water, providing the water is alkaline. * Hypericin solutions in water are red below pH 11.5; above pH 11.5 they are green with red fluorescence. These properties should make it easy to test whether an extract contains hyperi- cin, and how much. The Merck Index cites articles which pub- lished absorption and fluorescence spectra, which laboratories might use for precise tests. * The Merck Index also noted that "very small quantities appear to have a tonic and tranquilizing action on the human organism". Interview with Dr. Meruelo We called Daniel Meruelo, Ph.D., the principal author of the PNAS article. He is concerned that people have started using St. John's wort or commercial extracts, and hopes they will wait for more scientific evidence. He added that it is unfair to people to develop this potential treatment in an improper way; that peo- ple could be made hopeful or desperate to get the substance before it is clear that it could be helpful. The result could be hype, distress, profiteering, and potentially great harm. We expressed our concern that even if hypericin does work, it would take years to become available as a pharmaceutical; why not try the herb in the meantime? Dr. Meruelo replied that his team had found only minute amounts of hypericin in the commercial preparations they have tested. He doubted that it would be pos- sible to get enough of the chemical from the herb. We asked how that could be a problem, if it is possible to get a toxic dose by taking too much of the herb; no one would want to use more than that. He answered that the hypericin did not seem to be respon- sible for the toxicity, as his mice showed little or no evidence of toxicity when given the purified chemical. St. John's wort contains at least 50 chemicals, not only hypericin. Dr. Meruelo commented that earlier published studies which reported no toxicity from medical herbal preparations had not published blood tests to confirm the lack of toxicity. Dr. Meruelo also said that the work was proceeding very rapidly; more would be learned in the next several months, and if all went well clinical trials might start within a year. Right now his team cannot obtain enough purified hypericin to do toxi- city tests in dogs or higher animals; they get relatively little by extraction from St. John's wort, or by known means of chemical synthesis. They are now working on a better method for producing the chemical synthetically; that work is just beginning, however. Dr. Meruelo also emphasized that everybody involved, at NIH or elsewhere, has been very cooperative with this project; every- one recognizes its urgency. The team, so far financed only by the researchers' institutions (New York University, and the Weizmann Institute of Science in Israel), has been working very hard for almost two years. Now that they have data they hope to get more funding, and to interest a pharmaceutical company. We asked Dr. Meruelo why he and his colleagues decided to try hypericin in the first place. He replied that there was no reason to believe that there would be an anti-retroviral effect. But earlier papers had reported possible effectiveness of St. John's wort extracts against other viruses, such as herpes sim- plex and influenza (see references below); since retroviruses are a more urgent problem than herpes, and since one of the team members is a professor of organic chemistry at the Weizmann Institute and had an interest in the plant, they decided to try it. Comment Many questions remain. But despite Dr. Meruelo's under- standable caution, we do believe it is important to investigate whether a useful treatment based on a simple herbal extract could be developed. Until now the scientific community has believed that hyperi- cin was largely responsible for the toxicity of excessive amounts of St. John's wort. The lack of side effects in Dr. Meruelo's mice casts doubt on this hypothesis, but does not conclusively disprove it. The question is crucial, because if hypericin does cause the toxicity, then it should be possible to get all of it one could use through herbal teas or other preparations, avoiding the need to wait for chemical synthesis and official drug appro- val. The fact that the researchers are just beginning to learn how to synthesize hypericin efficiently, and will then start tox- icity tests on dogs, and do not yet have a pharmaceutical company involved, suggests that it will take some time before hypericin arrives in the drugstores. Human testing alone usually takes seven to ten years for U. S. drug approval. Hopefully standardized herbal extracts can be tested in community-based trials, with good medical supervision and scien- tific control so that we can quickly learn whether or not the treatment is helpful. Any such efforts using the herbs must be distinguished from efforts to develop the purified chemical. We hope both projects will move quickly. Meanwhile several people have just started using a St. John's wort tea for HIV, outside of a formal trial. While their reports will be anecdotal and not the equivalent of a scientific trial, they will be the first information we will have on human use of the herb for AIDS/HIV. Anyone considering using St. John's wort for AIDS/HIV should realize that there is no human experience yet with such use, serious question remain on whether enough hypericin could be obtained this way, and there might be toxicity if one is exposed to sunlight or other strong light. For these reasons, we believe that this herb should not yet be considered a routine alternative treatment. Those who try it at this time are pioneers; they should educate themselves thoroughly, work with others, and take all appropriate precautions. We have so far heard from two people who made a tea from dried St. John's wort; the tea did not have the characteristic red color of hypericin, suggesting that little of the chemical was present. One person reported nausea after drinking a dose of the tea much larger than suggested in the herb books. Kolesnikova (1986) reports that extracts from St. John's wort leaves and flowers work better as antibacterials than decoc- tions (teas prepared by boiling) -- and also allow better control of the dosage. We have seen only an abstract of the article and do not know how the extracts were made. Various tinctures and other extracts of St. John's wort are routinely sold in health-food stores; some do have the expected red color. But companies can legally call a product Hypericum (or St. John's wort) extract even if it contains only infini- tesimal quantities of the herb. Clearly we need chemical testing to answer serious doubts about whether various preparations con- tain enough hypericin to be worth trying. Independent non-profit groups such as HIV-positive buyers clubs could easily standardize doses by testing each lot of commercially available extracts and publishing the results -- avoiding the complications of re-mixing and re-bottling a standard product of their own. Alternatively, physicians may be able to obtain standardized medical extracts from abroad. In the United States, St. John's wort is usually harvested in July and August. If more of the herb is needed, it will not be necessary to wait another year, because the same plant species is common in Australia, which has its summer during our winter. The old plants, incidentally, contain the most hypericin, while the young plants seem most toxic to livestock (Horseley, 1934). AIDS Treatment News will continue to cover hypericin and St. John's wort, publishing updates as new information becomes avail- able. References Derbentseva NA, and others. Action of tannins from hypericum perforatum L. on the influenza virus. Language: Russian. Mikro- biol ZH, vol. 311 no. 6, pages 768-772, 1972. Hoffmann J, and Kuhl ED. Therapy of depressive states with hyper- icin. Language: German. ZFA (Stuttgart), vol. 55 no. 12, pages 776-782, April 30, 1979. Horseley CH. Investigation into the action of St. John's wort. J Pharmacol Exp Ther, vol. 50, pages 310-318, 1934. Kiriliuk ZhI. Treatment of suppurative infection with St. John's wort and kalanchoe preparations. Language: Russian. Vestn Khir, vol. 119 no 9, pages 112-116, September 1977. Kolesnikova AS. Bactericidal and immunocorrective properties of plant extracts. Language: Russian. Zh Mikrobiol Epidemiol Immunobiol no. 3, pages 75-78, March 1986. Meruelo D, Lavie G, and Lavie D. Therapeutic agents with dramatic antiretroviral activity and little toxicity at effective doses: Aromatic polycyclic diones hypericin and pseudohypericin. Proceedings of the National Academy of Sciences, USA, vol. 85, pages 5230-5234, July 1988. Muldner H, and Zoller M. Antidepressive effect of a Hypericum extract standardized to an active hypericine complex. Biochemical and clinical studies. Language: German. Arzneimittelforschung, vol. 34 no. 8, pages 918-920, 1984. Nozaki J, and others. New antiviral agent isolated from Hyperi- cum erectum with activity against herpes simplex, influenza, rabies, hepatitis B virus, etc. Abstract # C84-129876; we do not have the complete reference. ***** Medical Virology Conference, San Francisco September 22-24 The 1988 International Symposium on Medical Virology, spon- sored by the Department of Pathology, University of California Irvine Medical Center, will be at the Ramada Renaissance Hotel in San Francisco, Sept. 22-24. Registration is $225.00 ($125.00 student), and credit is available. Scientists will provide "a comprehensive overview of the diagnosis, clinical manifestations, and treatment of human viral diseases. In addition, poster sessions will provide an opportun- ity to discuss specific research and developmental work in new areas of medical virology. The symposium is directed to all individuals involved in the diagnosis and management of patients with viral infections, including microbiologists, internists, pathologists, infectious disease specialists, and medical tech- nologists." The conference is coordinated by Luis M. de la Maza, M. D., Ph.D. For registration information, call (714) 634-6868. ***** Stanford: Nutrition and AIDS Conference, September 10 A one-day conference on nutrition and AIDS, organized by the ARIS Project (an AIDS service organization) and the Stanford AIDS Education Project, will take place at the Dinkelspiel Auditorium on the Stanford campus, Saturday September 10. Registration at the door is 7: 30 to 8: 30 AM; a talk by Donald Kotler, MD, gastrointestinal AIDS specialist at St. Luke's Roosevelt Hospital Center in New York, starts at 9: 00. Cost is no more than $35.00; credit is available for pharma- cists, registered nurses, and registered dietitians. PWAs can register in advance for free admission. For more information call the ARIS Project at (408) 370-3272. ***** Dextran Sulfate Side Effects Alan Levin, M. D., of Positive Action HealthCare in San Francisco, asked us to warn people about possible gastrointesti- nal side effects of large doses of dextran sulfate. In recent weeks he has seen at least six people with explo- sive bloody diarrhea after taking 3000 mg or more of dextran sul- fate per day. Two of them had colonoscopies, and showed evidence of what looked like ulcerative colitis. When these patients discontinued dextran sulfate, their symptoms resolved and stools became normal. One had a repeat colonoscopy, and the lesions seen earlier had resolved. Dr. Levin is suggesting that the dose be lowered from 3000 to between 1800 and 2400 mg per day. He has three hundred patients who are using dextran sulfate; most had been taking about 3000 mg per day. Donald Abrams, M. D., who is running a dextran sulfate study at San Francisco General Hospital, has also reported gastrointes- tinal symptoms as a side effect of the drug. The diarrhea has also led to questions about whether dextran sulfate is well absorbed. In Japan, dextran sulfate has been used without a prescrip- tion for over 20 years. But the doses have been lower, commonly 900 mg per day. ***** San Francisco: Chinese Medicine Programs for Seropositives (I.) Quan Yin Acupuncture and Herb Center in San Francisco will sponsor a new herbal program and study for 100 persons who are HIV positive. The 12-week program, which is partially subsi- dized and offered in conjunction with the Institute of Tradi- tional Medicine in Portland, OR, and the Oriental Healing Arts Institute in Long Beach, CA, still has 35 places open. Partici- pants must call immediately to avoid missing the starting date of the program. The cost of the herbs is $55.00 a month. A monthly consul- tation with an herbalist is included at no extra charge. Other costs are for two acupuncture sessions per month with any acu- puncturist at Quan Yin (required as part of the program -- slid- ing scale $20.00 to $75.00 per session), and a CBC blood test once per month (cost about $10.00). Quan Yin does accept insurance, does accept MediCal for acupuncture, and will help people with their insurance and financial planning. For more information or to get an application, stop by Quan Yin at 513 Valencia St. (corner of 16th), or call 861-1101. (II.) Separate, comprehensive HIV-positive (and AIDS/ARC) programs run by the San Francisco AIDS Alternative Healing Pro- ject (AAHP) will start in early September. Interested partici- pants must call immediately. These programs include acupuncture, herbal consulting, nutritional counseling, nutrition groups with Tom O'Connor, mas- sage, individual counseling, hypnotherapy, chiropractic as needed, donated nutritional supplements, a support group run by a counselor, and additional consulting with Misha Cohen, clinical director of the HIV programs. The programs require a 26-week commitment, and costs $140. per week for the HIV-positive program, and $170. for the AIDS/ARC, which is more intensive. AAHP does accept insurance, and does help people plan for financing, but it is a non-profit organization with no outside funding, so it must support itself through fees. AAHP is just completing a six-month herbal treatment study with 22 persons with HIV infection and six with chronic fatigue syndrome. The new programs will start in mid September. For more information call the Project at 558-9292. Call immediately to avoid missing the starting date. (III.) Other programs. Both Quan Yin and AAHP have or are developing other HIV programs. Some can be started at any time; but the advantage of the ones which begin at set times is that they are group programs, meaning that participants regularly meet each other and can more easily compare experiences. For more information about any of these programs, call the organizations at the numbers above. ***** Tom O'Connor on National Tour Tom O'Connor, author of Living with AIDS: Reaching Out (see review in AIDS Treatment News, August 14, 1987) may be able to speak to your group this Fall or Winter. He will be in the Carolinas to Toronto area in October, Hawaii in November, the Midwest and then Southern California in December, and the Gulf Coast (Texas to Florida) in January. If you are interested in having him come to your city, con- tact him at (415) 821-0853, or 3851 21st St., San Francisco, CA 94114. ***** Washington DC Demonstrations, Conference October 5-13 A week of meetings, cultural events, and demonstrations, including a National AIDS Activism Conference (October 8), an activists meeting (October 9), and demonstrations at the Depart- ment of Health and Human Services (October 10) and the Food and Drug Administration (October 11), will mark the anniversary of last year's March on Washington for Lesbian and Gay Rights. Those who want to go should make travel plans now to get the low rates. ACT NOW (AIDS Coalition to Network, Organize, and Win), a national coordinating group of various local ACT UP organiza- tions, is sponsoring the treatment meetings and demonstrations. The Names Project, the National Gay & Lesbian Task Force, and other organizations, are sponsoring other events during the week. For more information about the events, you can call the Names Project at (415) 863-5511, the National Gay & Lesbian Task Force at (202) 332-6483, or your local ACT UP group. In San Francisco, the ACT UP number is (415) 821-9087. United Airlines is offering group discounts, plus a donation the Names Project for each ticket sold. Call them at 800-521- 4041, and use group account number 8664N. Nicholas Sempeti of FOG Travel Service in San Francisco gave us pointers on buying tickets. For those who might be arrested at the FDA demonstration, where nonviolent civil disobedience is planned, he suggested a "refundable" rather than "nonrefundable" round-trip ticket. The refundable one, which costs a little more, allows changes with a 25 percent penalty for any leg of the trip changed. The nonrefundable ticket is lost if not used at the reserved time, requiring an expensive one-way trip back for those who spend time in jail. And of course it's important to buy tickets early; even if airline rules set a deadline for low fares such as two weeks before the flight, only a certain number of tickets are set aside for those fares, and often they sell out before the official deadline. ***** San Francisco: CRI Project Needs Administrator The PWA Coalition of San Francisco is looking for an administrator to help it organize a community research initiative (CRI) to facilitate community-based trials. A medical/clinical research background is preferred. Applicants should have organi- zational and interpersonal skills, knowledge of HIV treatment options, word processing and writing skills, fundraising experi- ence, and commitment to the project. Send a resume and cover letter to CRI c/o Terry Beswick, 273 Church St., San Francisco, CA 94114, or call (415) 626-4053. Volunteers are also needed. ***** AIDS Treatment Survey: You Can Help AIDS Treatment News is conducting a survey asking its 5,500 subscribers what AIDS/ARC/HIV treatments they believe worked best for them, and which ones seemed worst. The results will be pub- lished in AIDS Treatment News. You can help people everywhere by sharing your experience of what worked or didn't work for you. This survey questionnaire must be sent to the address below by September 30 to be included in the tabulation. The following partial list of treatments may be helpful. But please feel free to include treatments whether they are on this list or not. Sometimes there is more than one name for a treatment, e.g. AZT, Retrovir, and Zidovudine. You can use any name; we will combine totals when appropriate. Acidophilus ** Acyclovir ** Acupuncture ** Aerosol pentami- dine ** AL-721 (or workalikes -- please specify) ** Aloe vera ** Alpha interferon ** Amphotericin B ** Amino acids (please specify) ** Ampligen ** Ansamycin ** Antabuse ** AS 101 ** AZT ** Bactrim ** Bee propolis ** BHT ** Carrisyn ** Castanospermine ** Chemotherapy ** Chinese medicine (please specify) ** Coenzyme Q ** Dapsone ** DDC ** Dextran sul- fate ** DHEA ** Dideoxycytidine ** DNCB ** D-penicillamine ** DTC ** Echinacea ** Egg lecithin lipids ** Erythro- poietin ** Fansidar ** Fluconazole ** Foscarnet ** Fusidic acid ** Gamma globulin ** Garlic ** Germanium ** Glandular extracts (please specify) ** GM-CSF ** Ganciclovir ** Gin- seng ** Glycyrrhizin ** Herbs (please specify) ** Homeo- pathic treatments (please specify) ** HPA-23 ** Hydrocortisone ** Hydrogen peroxide ** Hyperimmune globulin ** Imreg-1 ** Imuthiol ** Interferon (please specify) ** Interleukin-2 ** Iscador ** Isoprinosine ** Ketoconazole ** Lecithin ** Lentinan ** Lysine ** Methionine enkephalin (MEK) ** Milk from hyperimmune cows ** MM1 ** Monolaurin ** Mycelex ** Naltrexone ** Nutrition (please specify) ** Nystatin ** Ozone ** Penicillin (megadose) ** Peptide T ** Plasma- pheresis ** Prosorba column ** Proteolytic enzymes (Wobenzym, etc.) ** Radiation therapy ** Retrovir ** Ribavirin ** Rifabutin ** St. John's wort ** Salk polio vaccine ** Salk HIV vaccine ** Selenium ** Septra ** Shiitake mushrooms ** Spiramycin ** Spiritual approaches (please specify) ** Stress reduction techniques ** Thymic humoral factor ** Thymopentin (TP5) ** Thymostimulin ** Transfer factor ** Trimetrexate with leucovorin ** Tumor necrosis factor ** Typhoid vaccine ** Visualization ** Vitamins (please specify) ** Wheat grass juice ** Zidovudine ** Zinc AIDS Treatment Survey (1) You can remove this sheet and send it in. This form is not a permanent part of AIDS Treatment News; it was stapled to the current issue in order to make the printing and mailing easier. (2) This survey is for direct information only: from your own personal experience, or that of friends or acquaintances, or that of clients if you are a health professional. Please do not base your answers on theories or on written articles (in AIDS Treatment News or elsewhere). If you do not have first-hand information about AIDS treatments -- either by using them your- self, or by knowing someone who has used them, please do not send in this survey. (3) This survey questionnaire has space for the names of up to three treatments which you believe have worked best for you, and up to three which have worked worst -- either because they were ineffective or harmful. It also has space for optional com- ments and questions. Note that every question on the form is optional; just answer (or leave questions blank) in whatever way best makes sense. There is no set standard for judging what is the "best" treatment -- symptoms, laboratory results, or how you feel. You can use any of these criteria, or others. We want your overall judgment of what treatments you are happiest to have found, or would most recommend to others in a similar situation. Similarly, the "worst" treatments are ones you believe (for any reason) were harmful or did not help. You can include medically prescribed or alternative thera- pies -- for the underlying disease, for opportunistic conditions, or for symptom management. (4) The list of treatments in AIDS Treatment News #63 is only for convenience. You can also name treatments not on this list. You can also include spiritual practices, attitudinal healing, stress reduction methods, etc.; we want to hear what you believed helped (or did not help) you, no matter what kind of treatment it was. (5) If you used a treatment combination and do not know what particular treatments contributed to the result, you can list the whole combination as if it were one treatment. (6) The "Diagnosis Failures" section is really a separate survey. This section is important because increasingly we are seeing that most of the serious AIDS-related illness among those who are getting good quality conventional and alternative medical care is due to causes which have not been diagnosed. Treatments are getting better, and now diagnosis is becoming more important. In this survey, we want to collect accounts of cases of difficult diagnosis, and what the cause of the problem eventually turned out to be (if known), so that we can provide patients and physi- cians with checklists of possibilities to consider when diagnosis is not obvious. PART I: BEST TREATMENTS List up to three treatments for AIDS, ARC, or any HIV condition which you believe have worked best, for yourself, friends, fam- ily, acquaintances, clients, or other persons you have known per- sonally. ____________________________________ (best treatment) ____________________________________ ____________________________________ PART II: WORST TREATMENTS List up to three treatments which you believe have been worst (either more harmful than helpful, or ineffective) -- for your- self or others you have known personally. ____________________________________ (worst treatment) ____________________________________ ____________________________________ PART III: EXPLANATION What should people know about your experience with these treat- ments? For example, what condition did you use the treatment for? What doses did you use? How long did it take before you saw clear improvement or lack of it? Use separate sheets of paper for your answer, if necessary. (Note: Be sure it is clear which treatment you are referring to, if you named more than one above.) PART IV: DIAGNOSIS FAILURES If you or a friend or client have ever had an AIDS-related ill- ness which was difficult to diagnose, please give us a brief his- tory. Tell us what the symptoms were, and what the cause finally turned out to be (if known). Please include what lab tests were run (and results, if known) -- especially for those lab tests which did contribute to the diagnosis. Use separate paper if necessary. PART V: MISCELLANEOUS Are you a physician or other health professional? If so, please indicate: "M. D. ", "R. N. ", "nutritionist", etc._________________ Zip code (or nation, if not U. S.), so that we can do geographic breakdowns on treatment use ______________________ Optional: Can we contact you if we have questions about your answers? If so, give us a name and phone number, which we will keep confidential. If you prefer to be anonymous, you can leave this section blank. Optional: name___________________________ phone__________________ PLEASE SEND COMPLETED QUESTIONNAIRES TO: Survey, c/o John S. James, P. O. Box 411256, San Francisco, CA 94141. Questionnaires must be postmarked by September 30 to be included in the tabulation. [That was 1988. -- sysop] ***** [Obsolete subscription information has been removed. See the latest issues for up-to-date information. -- sysop] &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& End of display