Some people experienced facial wasting as a result of HIV treatment, others got a fat face. Nelson Vergel had the swollen glands on the side of his face that made it look bigger.
Vergel, a treatment activist who started as an advocate of exercise and anabolic steroids to treat loss of lean body mass in people with HIV, lectures all over the world on how to live well with the virus. Still, he found nothing by the way of research discussing the problem of inflamed parotid glands in HIV. Then he got a call from a friend in Los Angeles, Dr. Tony Mills. Mills found a local cancer doctor successfully treating the condition.
Vergel sought the radiation treatment from Dr. Patricia Gordon and raved about the results on his blog, http://survivinghiv.blogspot.com. "It's been four years now (as of March 2006) and they are still normal! I had no significant side effects besides redness for a few days, no beard for a month (which I liked), and a temporary loss of normal saliva production. All returned to normal after a month or so." He thought that a temporary small dip in his T-cells also resulted from the treatment, but couldn't be sure.
The chipmunk cheeks, the bullfrog neck, the buffalo hump, the protease paunch -- there are treatments for these distressing body changes brought on by HIV medications. That doesn't mean that getting back to where you started is easy. It does mean that options exist.
Minutes after I e-mail Dr. Gordon about her amazing work with HIV patients experiencing facial abnormalities, she calls me. That's a dedicated doctor.
"My patients are always looking for ways to get the word out," she tells me.
"I treat lung, prostate, and breast cancer, but my passion is HIV," Gordon continues. Treating 1,500 AIDS patients with Kaposi's sarcoma (KS) during the late '80s was tremendously satisfying for her. Parotid enlargement is not cancer," she says, "but low doses of radiation have been highly successful in eliminating the swelling, getting rid of the chipmunk look and restoring the normal angle of the jaw line."
"Kaposi's sarcoma went away with antiviral therapy, and then we saw the horrible side effects of lipodystrophy," Gordon explains about her new HIV work. "Lipodystrophy" refers to body fat abnormalities related to HIV medications, as well as metabolic complications such as elevated cholesterol.
She provides several treatments of low-dose radiation, over three weeks, to shrink the glands back to normal, and says she's had no trouble getting reimbursement from Medicaid and private insurance. That's because "it's painful," she says of the condition. "These cheeks can become massive. Some of these guys are so grateful they cry. Some wouldn't go out of the house because it was so grotesque looking." The treatment "greatly reduces, and in most cases, eliminates, the swelling," she says of the 400-plus HIV patients she has treated. She can be reached at 1-310-201-6739 or 1-310-659-6770. Her clinic has a hotel rate for patients.
I recently saw a prominent woman with HIV, a motivational speaker, still slim and beautiful after all these years. But on her neck, directly under her face, there was about five or 10 pounds of fat, so large and abnormal that anyone seeing her would know something was wrong.
"I can fix that," says plastic surgeon Dr. Joseph Romano, whose clinic is in San Francisco. Vergel refers people to Romano: "He's doing great work. He uses ultrasound-assisted liposuction, so that the ultrasound breaks down the fat before liposuctioning it out. It goes down with weight loss, but some people need liposuction."
Romano can be reached at 1-415-981-3911 or via his Website, www.jromano.com. Remember that plastic surgery is expensive, and not covered by insurance, unless it can be tied to pain-related issues or sleep apnea.
"I see someone with sunken cheeks," says Vergel, "and I just want to talk to them: 'Listen, there's a patient assistance program [for Sculptra] -- you don't even have to pay for it. I can show you how.'" Vergel says his lectures and Internet work makes it easy for him to talk about Sculptra treatments because it allows people to come to him. Vergel's Website is www.powerusa.org.
Also see back issues of Positively Aware for personal stories of surgery for facial wasting. The November/December 2004 issue covers Bio-Alcamid, available in a Tijuana clinic with a large number of HIV patients, for both facial wasting and buttock enhancement -- look for an upcoming article on the latter. Call 1-619-298-0657 or visit www.clinicestetica.com. It is also now available in Canada; visit www.facialwasting.org. The May/June 2002 issue has a story on Sculptra.
Vergel swears that the so-called "protease paunch" associated with antiviral therapy can be reversed, but few people can do what it takes: diet and exercise.
"First, improve your insulin sensitivity by choosing only low-glycemic index carbs (like oatmeal, fruits, and vegetables)," he says. "Lower your simple carbs. White is bad, color is good -- it's not a racist thing!" jokes Vergel, who's from Venezuela. "No sugar, no white flour, no pasta, no tortillas, no chips. Lots of lean meats, nuts, eggs, low-fat cheese. Don't drink soda pop, just water. Watch bottled juice -- some have more sugar than pop. I think all these problems are sugar related. Dr. [Donald] Kotler showed that visceral obesity [the enlarged belly] is associated with glucose intolerance, and that many people with normal blood sugar have metabolic symptoms years before it shows up in the blood." [See Vergel's interview with Dr. Kotler at www.nelsonvergel.com.]
Vergel points out that a fasting blood sugar test is very different from a glucose tolerance test. The glucose tolerance test is simple, but very inconvenient. It consists of giving someone a glucose solution to drink and then having them sit around for hours waiting to be tested for their blood glucose response to see if there is glucose intolerance. Said one prominent HIV specialist, "Patients hate taking the test, and we hate giving it."
For those people with both obesity and severe glucose intolerance, the use of metformin (Glucophage), says Vergel, has been shown in a small study to decrease belly fat, especially if used along with cardiovascular exercise. Other insulin sensitizers like Actos [pioglitazone] and Azandia [rosiglitazone] don't seem to work as well in reducing belly fat, he says.
A low-carb diet would "shed all that fat" (although he's not a fan of the Atkins diet), but people find it hard to stay on them, Vergel continues.
Liposuction cannot be used for protease paunch -- what in other groups of people, such as alcoholics or diabetics, is called metabolic syndrome or Syndrome X -- because the fat lies internally, directly on the organs. This type of belly tends to be hard, not blubbery.
Vergel talked about a Tufts University study showing that in HIV-positive people, those with a higher intake of soluble fiber (fruits and vegetables) had a trend towards lower incidence of lipodystrophy-related abdominal fat, and so did the ones who exercised. "This makes sense," says Vergel, "since soluble fiber slows down the absorption of glucose into the blood stream and may give insulin a better chance to work properly. Exercise also makes insulin work better to help the body use glucose for energy. I tell people, if you can't do anything else, walk everywhere you can, avoid processed sweets and starches, and eat more fruits and vegetables. It is interesting to me that I see less obesity among the people in New York and in European cities -- they walk everywhere.
"We're not eating enough soluble fiber or exercising, and the PIs [protease inhibitor HIV medications] make it much worse, and we're all aging," Vergel concluded.
Losing the Fat, in Brief
The editors of AIDS Treatment Update, in London, put together these weight loss tips from Nelson Vergel in their December 2005 issue. Visit www.aidsmap.com.