Without alternative therapies,” says Peter Marcoe, “I’d be dead. It’s that simple.” When Marcoe was diagnosed with HIV, in 1989, there were no effective drug regimens to control the virus, so alternative therapies were the only option for those trying to keep body and spirit going strong. Today, with dozens of HIV meds available, Marcoe is among the many positive people who team their HIV combos with complementary and alternative medicines (CAMs). These include herbal remedies, nutritional supplements, homeopathy, acupuncture, massage and meditation—which can help boost the immune system and soften the side effects of antiviral drugs. “Traditional medicine doesn’t have all the answers,” says Marcoe, 54. “Your health is in your own hands.”
With or without their physicians’ support, some 60 to 70 percent of people with HIV employ CAM therapies, according to studies. None of these therapies has been shown to suppress HIV reproduction or block the virus from entering cells, so most people team the alternatives with HIV combo therapy. “The meds sustain us,” Marcoe says, “but my alternatives—including herbs, meditation, super oxygenation and homeopathic remedies—make me feel better and give me energy.”
Another HIV long-timer agrees. “Acupuncture tided me over until there was an HIV combo I could take,” says Scott Alan of Laguna Beach, California, also diagnosed in 1989. Now, he says, regular acupuncture treatments “elevate my mood and [allow me to feel] in control. I don’t have to leave everything to my doctor and my meds.”
Many folks with HIV say their bodies provide all the evidence they need of CAMs’ effectiveness. But without data, how do you decipher which alternative remedies work and are safe, and which are a waste of money (or may interact with your HIV meds and endanger your health)? Follow these steps:
1. Talk with your doctor. “Patients are often afraid to tell their doctors they’re using something that’s not traditional,” says Jason Tokumoto, MD, of UCSF Medical Center and the National HIV/AIDS Clinician Consultation Center. “But it’s very important for patient and provider to connect on this.” In one study, he says, 33 percent of clinicians didn’t know their patients were using a CAM remedy, and 25 percent of the CAMs they used could have had an adverse effect. So tell your doctor you’re considering an alternative treatment before starting. If your doc isn’t familiar with the treatment, ask for a referral to a specialist. (Physicians can also seek information from the National HIV/AIDS Clinician Consultation Center, 800.933.3413; UCSF Box 1365, San Francisco, CA 94143.)
2. Do your research. The following Internet sites provide clear information about alternative therapies and product resources (some also offer help by mail and phone):
• The National Institutes of Health’s National Center for Complementary and Alternative Medicine:
nccam.nih.gov (search “HIV”); 888.644.6226, NCCAM Clearinghouse, P.O. Box 7923, Gaithersburg, MD 20898.
• The American Botanic Council: herbalgram.org; 800.373.7105, P.O. Box 144345, Austin, TX 78714.
• The New York Buyers Club: New York
buyersclub.org (click on the “NYBC Supplement Fact Sheet”); 800.650.4983, 75 Varick Street, Suite 1404-DC1707, New York, NY 10013.
• The Mayo Clinic: mayoclinic.com (search for “complementary and alternative medicine”).
• American Neutraceutical Association: ana-jana.org (click on “herbs and supplements,” “conditions” or “neutraceutical info”).
3. Monitor meds. Check for various interactions between HIV meds and CAMs by clicking “Check My Meds” at AIDSmeds.com. Or search “interactions” at hivinsite.ucsf.edu for their Database of Antiretroviral Drug Interactions. Off the Internet, your best source for getting any drug interaction information is a pharmacist. If you don’t feel comfortable at your local drugstore, you can ask a pharmacist at another store.
4. Shop smartly. Investigate the brand before buying dietary supplements such as herbs. “I always Google the brand to start,” says Tokumoto. “If it’s marketed as being able to cure 30 different things, that’s a red flag.” Mark Blumenthal, of the American Botanical Council, suggests another evaluation method: Check for a seal on the product indicating that an independent third party has tested it and determined that it meets the levels set by Good Manufacturing Practices (GMP).
Some seals of approval:
• USP: United States Pharmacopeia is a nonprofit organization that sets standards for all prescription and over-the-counter medicines, dietary supplements and other health care products made and sold in the U.S.
• NSF: NSF International (formerly the National Sanitation Foundation) is a nonprofit, nongovernmental organization that develops standards and provides product certification and education for public health and safety.
• NPA: The Natural Products Association is a nonprofit industry organization that represents manufacturers, retailers, wholesalers and distributors of natural products (including dietary supplements).
• CL: Consumerlab.com is a for-profit company that tests dietary supplements. One pitfall: If a company has paid for Consumerlab testing and its product doesn’t pass, the company can choose not to make the results public.
Blumenthal adds, “The lack of a seal doesn’t necessarily mean that a product is substandard. Some companies [avoid] third-party verification because they believe the requirements are too low—they feel theirs are higher.” The brands Nature’s Way and Herb Farm, for example, don’t have seals but do have long-standing cred. Demand no less.
Not by Meds Alone
Alternative methods can help us keep a positive health profile. Are they right for you?
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