A single nutrient that might slow disease progression, improve mental function and eliminate fatigue and nerve problems... sound too good to be true? Maybe not. Vitamin B-12 has been found in several studies to be deficient in a large percentage of people with HIV, even in early disease stages. And it has long been used by many PWAs for the simple reason that it makes them feel immensely better, greatly improving energy and helping restore memory and lessen nerve problems, including neuropathy. But most of the medical world hadn't paid much attention to the nutrient until last summer, when a Johns Hopkins University study found that people with HIV who were B-12 deficient had a twofold increased risk of progression, reaching AIDS four years faster, on average, than those with normal levels.
Exactly how B-12 may slow HIV progression is not known, but the finding is not surprising considering all the roles this vitamin plays. It's necessary for the production of red blood cells for the building of bone marrow and nucleic acids (needed in large quantities because of rapid cell turnover with HIV infection) and, with the other B vitamins, for the conversion of fats, carbohydrates and proteins to energy. It's also essential for the healthy function of nerve tissue.
B-12 deficiencies are known to cause many symptoms, including fatigue, decreased reflexes, weakness, tinnitus (chronic ringing in the ears), peripheral neuropathy, burning tongue, mouth sores, impaired bone marrow and immune function, and such mental/cognitive problems as memory loss, confusion, depression and mania. Some of these symptoms have sometimes been mistakenly diagnosed as AIDS dementia, leaving the B-12 deficiency untreated and the person suffering needless problems with thinking, memory and movement. Deficiency can also cause myelopathy, a devastating spinal-cord disorder that can result in limb weakness, partial paralysis, inability to control leg movement, difficulty walking, erection problems and increased urination. In such cases, failure to treat -- all too common among nutrition-ignorant physicians -- is criminal.
With all the problems B-12 deficiency can create, it's no wonder that people who keep their levels normal feel better and stay healthier longer. San Francisco PWA Jay Sheldrake swears by his B-12 injections. "After years of overwhelming fatigue, I was sick and tired of being sick and tired. Then a series of injections [first daily, now three per week] made me feel better than I had in years. Now I'd never give them up. Handling this disease is tough enough without a bad memory and no energy. B-12 helps me keep on keeping on."
So how do you know whether your level is adequate? Unfortunately, there are no reliable laboratory tests for detecting B-12 deficiency in people with HIV, according to leading HIV nutrition researchers with the AIDS unit at the Centre Medical Fernand Bezancon in St. Martin du Tertre, France. In fact, using the standard blood test can be misleading, indicating normal status when there's really a deficiency. The only way to judge whether a deficiency has been improved by supplementation may be to look at symptoms. People with fatigue, memory problems or other symptoms that might be deficiency-related could try supplementing for six to eight weeks to see if there are improvements. Even in those without symptoms, the frequency of B-12 deficiency makes regular supplementation advisable to help ensure the level that could slow disease progression.
Jennifer Jensen, a registered dietitian with a large HIV practice in Santa Monica, California, says, "Don't waste your time with a worthless test since the research is clear that anyone with HIV is probably B-12 deficient. I universally recommend injections of at least 1000 micrograms [mcg] three times weekly -- with increases if needed to counter symptoms." Jensen says subcutaneous (under the skin) injections are less painful and easier than the intramuscular type. She adds, "Injections are the best way to get B-12 into the body. Second best are nasal gel or oral spray forms, which pass directly into the bloodstream, bypassing the HIV-caused absorption problems that can prevent uptake of B-12 from tablets." But for those in early disease stages, sublingual lozenges are a cheaper, better-than-nothing alternative. B-12 injections (about 50 cents each, including syringe cost, plus doctor fees) will usually be covered by insurance or Medicaid. You can also ask a doctor or nurse to teach you or a partner to self-administer the injections.
Sheldrake advises, "Don't let a physician's lack of knowledge about this keep you from getting the therapy that can give you the energy and mental function you need to fight this tough disease."