AIDS Treatment Notes

Oklahoma Buyers' Club Very Much Alive. In June we published a telephone number for David Robison of Nutrico /
Oklahoma Project Inform in Tulsa, OK. This number has been disconnected and we have received questions about it.
The new number is 918-496-8833. The previous phone was in the name of David's lover of eight years, who died unexpectedly in June. His family, who did not know about the relationship, had the phone disconnected with no referral.
David Robison is the key person in getting out the word about monolaurin, which continues to look promising. He co-
founded the first buyer's club anywhere by and for HIV-positive persons. He is determined to continue with this important work despite the loss and adversity he has suffered.


Newsbase Computer Back Online. Computer users can download back issues of these articles in computer-readable form from Newsbase in San Francisco, (415) 824-8767 (modem, 24 hours a day). We first published this number May 8, but in the interim Newsbase was closed for public use for several weeks. It is now open to anyone for read-only access.


GLEAN Computer To Carry These Articles. The Gay and Lesbian Electronic Access Network (GLEAN) in San Francisco will also carry this series of articles on experimental and alternative AIDS treatments. For more information call Ken McPherson at GLEAN, (415) 441-7613.
Note that permission is granted to place electronic copies of these AIDS articles online on any computer service, free or commercial. You can download copies from Newsbase or GLEAN, then upload them to bulletin boards, etc.


Fake AL 721 on the way? Industry sources tell us to expect that one or more companies will start selling powdered
egg yolk as "egg lecithin". The product, commercially called "dried egg yolk solids", is normally used in cake mixes, breads, milkshakes, and other processed foods. Cheap and readily available, it can be sold at an enormous markup and still undercut legitimate "generic AL 721" type products. It is no closer to AL 721 than egg yolks from a grocery store.
The best defense will be community-run organizations such as buyers clubs, which can do laboratory testing when necessary to expose bad products and select good ones.


Danger: AZT and Tylenol Don't Mix. Anyone using AZT should know that combining it with acetaminophen (the active
ingredient in Tylenol and some other pain-killers) can seriously increase the hematologic damage which is the worst
side effect of AZT.
The package insert on Retrovir (AZT), supplied to physicians by Burroughs-Wellcome, warns several times against
combining AZT and acetaminophen (March 1987 version). Yet even in San Francisco we are finding that many patients using AZT have never heard this warning.
A number of other drugs might also be dangerous if combined with AZT. Patients using AZT should make sure they
are advised by their physicians about possible drug interactions.


AIDS/ARC/HIV-Positive Affinity Groups. We received the following notice from Gary Babcock in Berkeley, who is
facilitating the development of HIV-positive affinity groups. You can call him for more information. We highly recommend this effort.
"Some persons who are HIV positive or who have ARC or AIDS are forming their own affinity groups of eight to 12 people. These groups meet regularly, usually once a week, to discuss the latest news about therapies, drug trials, availability of different treatments, and so on. Another function served by such groups is to buy nutritional supplements or drugs (such as AL 721) in bulk, thereby reducing members' cost.
"Activities often associated with traditional support groups are also undertaken by HIV positive affinity groups.
Readings are often assigned from books on self-healing, and are discussed at subsequent meetings. Doctors or other experts sometimes speak before the group to share their information and advice. Group meditations are often undertaken, and sometimes meetings are simply occasions at which people may express concern and support for their fellow group members.
"There is no known larger organization of such affinity groups; there probably should be. Those who are interested in
forming their own group, or a larger umbrella organization of such groups, and in learning what some already existing groups have found helpful, are invited to call Gary Babcock evenings before 9:30 PM, at (415) 549-9137. (This number will sometimes be call forwarded to another telephone, at which messages may be left.)"


Back Issues Available. This article is number 37 in the author's series on experimental and alternative treatments for AIDS and ARC. For information about back issues, call John S. James at 800-TREAT-1-2.