Most IC patients, have tried, or have considered trying, some form of alternative therapy to help relieve IC symptoms. Known as alternative, complementary, nutriceutical, holistic, integrative, and various other titles, this form of treatment, a shift away from allopathic medicine (most Western medicine is based on the allopathic principle that a disease is treated by creating an environment in which the disease can no longer survive), is sweeping the country. Various types of alternative therapies have existed for centuries, and have been practiced in the US for many years. But within the past few years, many of these therapies have become "mainstream," and it is not uncommon to find rows of herbal remedies in pharmacies as well as supermarkets. Some physicians are now incorporating many of these treatments into their practices, and practitioners of alternative medicine are setting up shop in even the smallest of towns. Considered standard forms of medical treatment in most of Europe for many years, alternative therapies in the US marketplace are now booming.
One reason for this boom is that in 1993, when the US Food and Drug Administration (FDA) began legislation to impose stricter regulations on the herbal and supplement industry, a massive consumer letter-writing campaign pressured the FDA to tone down their legislation. This resulted in the Dietary Supplement Health and Education Act (DSHEA), signed in 1994. This guideline for supplements, which includes vitamins, minerals and herbs, requires no proof of efficacy, no proof of safety, and sets no standards for quality control of products labeled as supplements. Manufacturers cannot make claims that their products affect (cure, alleviate, diagnose, prevent) a disease (if a product did, it would have to undergo standard FDA clinical testing to determine its safety and effectiveness), but they can cleverly word the product packaging to grab the consumer's attention.
For example, typical wording differences between an over-the-counter (OTC) laxative medication and an alternative herbal treatment that is purported to help relieve constipation would be the following: the OTC, FDA-approved medication can call itself a laxative; the alternative preparation cannot. The OTC medication can state that the medication helps to relieve constipation; the alternative preparation can use phrases such as, "promotes regularity," or "promotes healthy bowel function." Also, should questions arise about a product, the burden of proving negative claims lies with the FDA, not the manufacturer of the product. In other countries with regulation of supplement products, the burden of proof lies in the hands of the manufacturer, and standards of herb quality and safety assessment are enforced by the government, similar to the way in which the FDA controls the quality of prescription and over-the-counter medications in this country. Since there is no quality control, supplements can vary in quality and strength from bottle to bottle, and batch to batch. The FDA is currently working to redefine the DSHEA.
The enactment of the DSHEA has not helped the FDA in its attempts to ban questionable alternative treatments, even ones like the herb ephedra (a natural form of ephedrine, that can cause IC symptoms to flare) which has been linked to serious medical complications, such as heart failure. In many cases, healthy people are using alternative therapies to promote health, not to cure disease. Alternative therapies may turn out to play an important role in preventive medicine. Since the cause or causes of IC are unknown, and since IC has a yet unexplained relationship to other conditions such as allergies, fibromyalgia, irritable bowel syndrome, and/or vulvodynia, caution should be used when considering any treatment, including alternative treatments.
Not enough is understood yet about the nature of interstitial cystitis. Many IC patients have been told by various practitioners of alternative therapies to boost their immune systems with preparations like echinacea and ginseng, yet many of these practitioners have never heard of IC. Since IC researchers are still debating the possible link between IC and an autoimmune response, it would be unwise for anyone with autoimmune symptoms to try to "boost", their immune systems even further. Scientifically defined categories for the various causes of IC have not been established, and most IC patients (and physicians) don't know the actual cause or effect of IC in their bodies. This becomes territory that is potentially dangerous to your health.
The growth of the alternative medicine industry has been phenomenal, and this growth is expected to continue. Dr. Ching-Yao Shi of the Green Healing Center, and ICA Medical Advisory Board member, Kristene Whitmore, M.D., Chair of Urology at Graduate Hospital in Philadelphia, have been IC alternative-therapy pioneers, conducting open-label research using combinations of Chinese herbs to treat IC symptoms.
The ICA is currently pursuing other possibilities for IC research in this area. In our effort to find safe alternative therapies that can be proven beneficial to IC patients, we have begun collecting information about various natural remedies sent to us by IC patients. We would like to hear from you about any natural therapy that you feel has helped (or hindered) your IC. This is an excellent way for you to help get the IC and complementary medicine research ball rolling.
One possible avenue of IC and alternative therapy research exists at the Office of Alternative Medicine (OAM). In 1992, Congress established the Office of Alternative Medicine, a division of the National Institutes of Health (NIH). Since its formation, the OAM has seen its funding increased to $50 million, and has attained increased status as an NIH Institute. It is now called the National Center for Complementary and Alternative Medicine. This national Center will be able to fund alternative medicine-related research grants directly. Thus far, the OAM has funded more than thirteen research centers at universities and other institutions throughout the US. The OAM works closely with other institutions at the NIH to fund joint research projects. For instance, government-funded IC research is traditionally conducted through the NIDDK. If an IC researcher is interested in conducting research on IC and an alternative therapy, the OAM and NIDDK would work together to make this grant possible.
The ICA has heard from many patients who are trying various alternative therapies to help with their IC symptoms. Our hope is that more researchers will pursue the avenue of IC and alternative therapies, so that scientific evidence can be evaluated.
- Green Healing Center, Dr. Ching-Yao Shi, http://www.greenhealing.com/
- "Herbs as Medicines," Lisa Corbin Winslow, MD, David J. Knoll, PhD, Colorado Health Net, http://www.coloradohealthnet.org/
- Journal of the American Medical Association (JAMA), Vol. 280, No. 18, November 11, 1998
- National Center for Alternative and Complementary Medicine, http://nccam.nih.gov/
- "Nutriceutical, Alternative and Complementary Therapies," C. A. Tony Buffington, Ohio State University, http://nss.vet.ohio-state.edu/
- "Supplements - Report and Test," Consumer Reports, March 1999
- "Shopping for a Cure," Marcy O'Koon, Arthritis Today, March-April, 1999
ICA Update, Vol. 14, No. 2, 1999