Richard L. Bruno is chairperson of the International Post-Polio Task Force and director of The Post-Polio Institute at Englewood Hospital and Medical Center. Please e-mail questions directly to him at ppsforum@newmobility.com.

Note: This column is for information purposes only and is not intended as a substitute for professional medical advice.

Q: A lady who also has post-polio told me about exciting dietary supplements she is taking. Several years ago she wore braces, could not walk, used a wheelchair and was in excruciating pain. After the supplements she can walk--even up stairs--no longer uses a wheelchair, lost weight and is not taking any pain medication. I received a post-polio newsletter that recommends some of the same supplements to treat PPS that she's taking: alpha lipoic acid, carnitine, cysteine, coenzyme Q10, ginko biloba, NADH, and vitamins C, D and E. I was evaluated by you several years ago. And, as you warned, I have increased mobility difficulties. Will these pills stop my PPS from progressing?

A: You have to be very careful taking any dietary supplements, be they herbal remedies or vitamins. Supplements are not regulated by the Food and Drug Administration in the same way that drugs are because they are considered food additives under the 1994 Dietary Supplements Health and Education Act.

Companies selling supplements can only claim that they "maintain structure or function" of the body or promote "general well-being" because supplements do not have to go through the lengthy, exhaustive and expensive process that proves they are drugs-that is, that they are effective in treating a disease.

However, it's the seller who is responsible for ensuring the accuracy and truthfulness of claims for their supplements. This is like letting the wolf watch the hen house. And this is where companies are running into trouble. In January 2000, the 1994 act was amended because of companies making unsubstantiated claims for supplements. A supplement's label must now state that the FDA has not evaluated the company's claim and that the supplement is not intended to "diagnose, treat, cure or prevent any disease." (See www.cfsan.fda.gov/~dms/supplmnt.html and www.acsh.org/publications/story/drug_suppl/index.html.)

But there's a more dangerous problem than unsubstantiated claims. Although supplements don't have to be validated by the FDA as effective, they do have to be safe. In June 2001, the FDA warned companies using herbal additives--including ginkgo biloba--that their products could be illegal because they have not been proven to be safe. Indeed, ginkgo can be dangerous when combined with medications. High doses of ginkgo could decrease the effectiveness of antiseizure drugs. And ginkgo combined with trazodone, an antidepressant medication sometimes used by polio survivors (see the September Post-Polio Forum), resulted in an elderly patient going into a coma. What's more, there have been reports that ginkgo has blood-thinning properties and shouldn't be used if you are taking anticoagulants like Coumadin. Conversely, coenzyme Q10 may decrease the effectiveness of blood-thinning medications.

There's more: Alpha lipoic acid changes thyroid function, which is a problem if you're taking thyroid medication. And even vitamins can be dangerous. Vitamins E and C reduce the effectiveness of anti-cholesterol drugs intended to increase HDL "good" cholesterol. And too much vitamin A can cause symptoms identical to those of PPS--lasting headache, fatigue, muscle and joint pain--and can even be fatal.

It is important to talk to your doctor before taking any herbal remedy or vitamin. But even she may know little about supplement dangers. Fortunately, information about supplements' effects, side effects and dangers is available through the National Center for Complementary and Alternative Medicine and the National Library of Medicine.

I can't tell you how many patients have asked me for a "magic pill" to cure their PPS. Not one study has shown that any approved medication--let alone any vitamin, herb, amino acid or coenzyme, or any combination of them--cures or even helps decrease PPS symptoms. You have to be a cautious and informed patient. It's not a good idea to accept personal testimonials about supplements from anyone, even from other polio survivors. The placebo effect is a powerful and wonderful thing that can be activated by taking a pill another polio survivor says "worked miracles" or that a company says is "exciting," "incredible," or "clinically proven." But that same effect can also be short-lived and even dangerous if you take a pill instead of taking care of yourself and managing your PPS.

I am sorry your mobility problems are increasing. If you want to treat your PPS "by mouth," try a proven dietary "supplement": eating 16 grams of protein at breakfast (see the Post-Polio Protein "Diet") on the NM Web site.

A half-cup of low-fat cottage cheese in the morning is effective in decreasing fatigue and muscle weakness and is a lot cheaper than a handful of vitamins and herbs that have not been shown to be effective in reducing any PPS symptom.