Life with Chronic Disease: Complementary & Alternative Medicine

Recently I contracted a tick borne disease. While a number of my medical friends wanted to make sure I was on antibiotics, which I am, I’ve heard from many others advising “natural” remedies and alternative practices and practitioners.

Needless to say, I’ve been doing a lot of reading and talking to public health colleagues as I have a host of questions. Ultimately, there are not a lot of answers. Through this process, I’m reminded how certain aspects of this endemic are similar to what it was like during the first 15 years or so of the AIDS epidemic.  

• All sorts of home remedies being tried, including various combinations of vitamins and supplements, without any research to back them up.

• The belief that a cure is being withheld in order for pharmaceutical companies to make money

• Organizations rapidly formed by those affected.

• Scam artists abound to take advantage of those most desperate for help causing people to spend a lot of money unnecessarily.

When the effective treatment came for AIDS, it didn’t come from anything that had been developed in the “back alley.” It wasn’t an herbal remedy or some special combination of vitamins and supplements. Through clinical trials and the combined efforts of scientists, patients, medical providers, and advocates there are now a variety of medications that are keeping people healthy.

However, this is not to think the advocacy groups and AIDS service organizations didn’t make a significant contribution. They did in spades. Not only did they revolutionize how the FDA functions and how community can organize to take care of those who have such significant needs, they pioneered complementary practices to enhance quality of life and improve life expectancy.

“Complementary Medicine” refers to a range of disciplines that can be offered along with conventional treatments while “alternative” medicines are used in place of conventional treatments. Together these are often referred to as CAM (Complementary and Alternative Medicine). The term “Integrative Medicine” combines CAM with mainstream medical therapies in a coordinated approach.

I first learned about Qigong when I attended an AIDS conference in San Francisco. It’s a practice I do almost daily. Yoga, dance therapy, Reiki, meditation, mindfulness, support groups, acupuncture, acupressure, massage, nutrition, and mind/body connections were continually being discussed and tried.

Today, many of the “new” things we were exploring are now routine and most hospitals and medical centers offer them as integrative health services. For example, at NYU Langone,  their service of “holistic treatments and consultations” includes Acupuncture, Guided Imagery, Hypnosis, Massage Therapy, Mind-Body Relaxation Skills Training for Stress Management, Mindfulness Eating, Prenatal Massage, Reflexology, Reiki, Yoga and more.

Things to consider when exploring CAM options:

• Before starting any type of CAM, talk to your medical provider. Are there any reasons for or against? Possible complications?

• Check what works, what’s being tried, side effects etc. at the National Center for Complementary and Integrative Health, that is part of the National Institutes of Health.

• The Mayo Clinic offers a Diseases and Conditions website that includes “lifestyle and home remedies,” as well as “alternative medicine” that may be appropriate. It’s a good resource to check.

• Many condition specific organization,  e.g. American Cancer Society, offer information about CAM. Your local chapter can make recommendations about special classes and programs in your area and some chapters sponsor them.

• Connect with the “integrative services” program at your local hospital or health center for referrals, special programs for your condition etc.

• Before you enroll in a class or see a practitioner: check with your provider for a recommendation; find out about their credentials-do they meet your state’s requirements; do they work with people with your condition and/or have experience doing so; will your insurance cover the costs.

• If you decide to use a dietary supplement, such as an herbal product, vitamins or an alternative medication, be aware of side effects, interactions with other medications you might be taking and whether it could impact your condition negatively.

• Support groups are good places to discuss what’s worked and what hasn’t. However, they also lend themselves, particularly on-line groups, to practises that may turn out to be less than healthful.

• Know the warning signs of a scam-If it sounds too good to be true it probably is.

- The product promises a cure for a disease where there is none.

- The product is a quick cure for a wide range of ailments.

- The evidence given for its success is testimonials only.

- There are a number of products that claim “based on scientific study,” but the “study” will turn out to be designed by the manufacturer and will never appear in a peer reviewed medical journal. Further, the study may have only been done on animals. What works on animals doesn’t necessarily yield the same results in humans. In fact, there are questions being raised within the scientific community about the usefulness of animal testing.

- The term natural is often used to suggest that a product is safer than conventional medicine. Because many of these products are not under the Food and Drug Administration (FDA), you have no way of knowing what’s in the product or how much.

- Avoid products where the following key words are used in advertising miraculous cure, amazing breakthrough, foolproof, suppressed treatments,  secret ingredients, time-tested or new-found.

- Treatment is only available privately, for a short time or from only one source. Be even more skeptical if it requires payment in advance.

- The product is an experimental treatment only available if you pay to be part of study. Genuine clinical trials provide the treatment free of charge. 

- An “infomercial,”  newspaper, magazine or website promotion

- Satisfaction Guaranteed. Marketers of fraudulent products rarely stay in the same place for long.

- Lots of medical jargon. Terms and scientific explanations may sound impressive and may have an element of truth to them, but the public "has no way of discerning fact from fiction," says the FDA. Fanciful terms can cover up a lack of scientific proof.

- “The drug companies and medical providers don’t want you to know about this product because it would undercut their profits.” While drug companies may be profit driven, medical providers are in the business to heal and treat.