Ask your average hiver which body part they obsess about the most. Chances are that the mouth, that all-purpose, always-reliable funnel of food, drink, pills, smoke, flesh and -- oops! -- body fluids, comes at the bottom of the list. Do you worry about lipodystrophy of the lip? Of course not. But in other ages and cultures, that orifice was revered as a sacred object, a very window onto body and soul. In Chinese medicine, the tongue is observed before any other organ in order to map out a diagnosis. Healers look at that flapping muscle's color and texture, coating and smell to pinpoint the problem. Even the drama queens on ER sometimes have been heard to say, "Stick out your tongue!"
As much as Americans poke fun at, say, the Brits for their bad teeth, 50 percent of folks in the U.S. don't "open wide" regularly for the dentist or any other doctor, and the stats for HIVers may be even worse. Keeping mum on the question of dental and oral health can become a problem, as 90 percent of PWAs will eventually experience some HIV-related oral malady -- most likely, one that will interfere with eating right, taking meds and overall quality of life. "People often put off the mouth as a luxury item, but it is part of primary care," says David Reznik, DDS, director of the Grady Health Oral System Center in Atlanta. "You can't be healthy without a healthy mouth."
As certain ancients advised, the mouth can provide vital signs to, and be a critical conduit for a person's entire well-being. "We see changes in the mouth before they become systemic," Reznik says. In the '80s and early '90s, dentists were often the first health care professionals to spot signs of Kaposi's sarcoma (KS) or candidiasis and to urge their patients to get tested for HIV. Since the advent of HAART, the usual mouthy suspects -- thrush, KS, hairy leukoplakia, herpes simplex or zoster -- have all decreased. "Much of the dentistry that we do today is of the common variety," says Michael De Lorenzo, DMD, director of dentistry for the HIV/AIDS Department at St. Luke's/Roosevelt Hospital in New York City. "Usually fillings, cleanings, oral health instruction, crowns, bridges, orthodontics, extractions, oral surgery, dentures, biopsies, periodontal treatment and bleaching." But HAART has presented a new set of challenges for oral and dental health. Here's a pearly primer:
Brittle Teeth Syndrome
Highly Active Antiretroviral Therapy has yielded a bad seed that could be called Highly Active Tooth Decay, though practitioners dub it "Brittle Teeth Syndrome." This is your everyday tooth decay -- bacteria trapped in tooth crevices and causing a cavity -- made more efficient by a lack of normal saliva in those mouths that swallow HIV meds every day. De Lorenzo, however, emphatically urges against pointing the finger at HAART. The issue, he says, is a near epidemic of dry mouth. "The drugs are definitely a significant component of the syndrome. And not specifically antiretrovirals, but also many other drugs that people with HIV are regularly taking." It is estimated that some 500 drugs have a mouth-drying side effect, including most antidepressants, antihistamines, analgesics and narcotics (nicotine, alcohol and caffeine don't help, either). Saliva is your body's natural mouthwash, dissolving bacteria and fungi. Take it away, and you've got a perfect little Petri dish in the middle of your face -- not to mention a sensation anywhere from annoying to painful. What every practitioner will tell you is to keep hydrated -- take small sips of water all day long. (Every HIVer should down at least a gallon or two of water a day anyway to cleanse their hard-working livers and make their skin shine.) There are specific saliva substitutes sold that can be used throughout the day to moisten the mouth. Liquids include Salivart, Sali-Synt and V.A. Dralube; sprays, Xerolube, Moi-Stir, Mouth Kote and Orex. Just one or two sprays can moisten the mouth and throat for up to an hour or two, making talking, swallowing or chewing a breeze. But one comparison study found that certain products are much more effective than others: Mouth Kote lasted for almost two full hours, compared to only a half hour for Salivart, 18 minutes for Xerolube and 15 for plain water. Certain chewing gums can also help make spit. Your doctor can prescribe the drug pilocarpine (Salagen), which stimulates the salivary glands, but it has side effects and, rumor has it, ain't all that mouth-watering for some. But it's worth a try.
Necrotizing Ulcerative Periodontitis (NUP), formerly called HIV Gingivitis -- a severe inflammation of the gums -- is painful, bloody and, worst of all, progressive: You start with gum loss, proceed to bone exposure and then to loosening and, finally, loss of teeth -- in as short a time as 18 months. One likely cause is the aforementioned reduced saliva production in many HIVers on meds. Be vigilant with your dental hygiene at home, and make friends with a dentist for frequent removal of plaque and necrotic soft tissue. If you are diagnosed with severe NUP, you may have to take antibiotics; along with the usual brushing and flossing, you'll also have to rinse your mouth with solutions of povidone-iodine and chlorhexidine (both available at the drugstore).
HIV dentists are also increasingly seeing a drug-resistant form of candidiasis -- a.k.a. oral thrush -- a condition that prevails when there aren't enough "friendly" bacteria to keep the normally occurring candida albicans in check. Symptoms are painful cottage-cheese-like bumps or red patches on the tongue, gums and inner cheeks. Thrush can be zapped with topical agents such as clotrimazole lozenges (Mycelex troches, sucked slowly), oral amphotericin B (Fungizone, swished and swallowed), nystatin lozenges or liquid (Mycostatin liquid, swished and swallowed, or pastilles, sucked slowly). But beware nystatin, which is sweeter than honey -- use along with a topical fluoride rinse to prevent cavities. You can also go the pill route with ketoconazole (Nizoral), itraconazole (Sporanox), or fluconazole (Diflucan). Reznik warns against overprescribing of fluconazole -- it's effective but long-term use often leads to resistance. You might want to heed the advice of the many women out there who swear by the antifungal powers of fresh garlic, though a peeled clove tucked in the cheek is hardly discreet.
Human Papillomavirus (HPV) is a wildly promiscuous sexually transmitted disease, some strains of which cause unsightly warts and worse (cancer). "We're seeing an increase in HPV warts in people on HAART therapy, and my hypothesis is that it's part of a 'reconstitution syndrome,'" Resnick says. Another syndrome? Yep. After an initial period of time on HAART, HIVers -- especially those who have had 200 CD4 cells or less -- may have flare-ups of pre-existing infections, and one of these is HPV. HPV warts are only painful when on the gum line, but they can keep you hiding under the covers when they happen to bulge on your lips. A trained dentist can excise the warts with a scalpel or laser, but freezing is less invasive and easier to deal with. You can also try topical agents like Podofilox and Aldara cream. De Lorenzo prescribes oral alpha interferon lozenges.
Aphthous ulcers, commonly called canker sores, can occur in the soft tissue of both the mouth and esophagus and cause considerable pain, often making eating quite difficult. Reznik says that "stress" is a big trigger. (One more reason to start psychotherapy.) Your dentist can prescribe topical steroid ointments like fluocinonide 0.05 percent ointment mixed with Orabase or a dexamethasone mouth rinse or...thalidomide, which was recently approved for oral ulcer treatment.
I can't afford it" and "I can't stand the drill" are the two most common excuses neggies use to steer clear of the dentist. HIVers, of course, must do better. While cost is always a concern, the fear factor has often been less about the drill than the discrimination. No one should have to experience the humiliation of a hygienist freaking out at the sight of a sore, or a surgically gloved dentist who's phobic about occupational risk for HIV, refusing to even clean your teeth. Moreover, under the Americans With Disabilities Act, such rejection is illegal.
Gregg English, HIV positive since 1986, acknowledges that for years -- between the drill and the discrimination -- he could not get his ass to the dentist. "My mouth was full of sores, my teeth were infected," he says. "I didn't know where to go or what to do until I heard through the community that there was a [Ryan White-funded] clinic." Finally, in 1995, he paid a visit to Helene Bednarsh, RDH, MPH, and director of the HIV Dental Ombudsperson Program in Boston. She referred him to a dentist for cleanings every three months. For English, as for many HIVers, the improvement was not merely cosmetic: A healthier mouth has meant better ability to eat and take meds. "After I got dental care, my hospital visits went down to zero," he says.
Reznik allows that the dental profession has a checkered history in its dealings with the HIV-challenged. "We used to see an incredible level of discrimination," he says. "But we have made great strides in the last 10 years." Bednarsh agrees that dental bias has abated, largely because the data have shown the occupational risk of infection to be virtually nil.
The Ryan White Care Act, passed in 1991, has vastly improved access to affordable dental care for HIVers. Even if you live in the boonies, far from a big-city ASO, government-funded programs can refer you to a local dental professional in your area (to get started, click on Reznik's website at hivdent.org.
Finding the right dentist can make all the difference. The first time Robyn, HIV positive for 10 years, went to the dentist complaining of pain in her gums, a resident looked in her mouth and said, "Why don't you just pull them all out?" After Robyn bothered to complain, an HIV-dental advocate from a Ryan White program stepped in with a referral to an HIV-savvy professional for her -- and some "continuing education" for the resident.
So take Gregg English's advice: Forget your fears and make your mouth happy. If all you need is a cleaning, you'll leave the office with your teeth whistling white and ready for some action. But if you've been postponing some more serious work, the sooner you bend to the will of the drill, the better. "Once you start taking care of your oral health, your overall health improves," English says. "I don't think I'd be here today if I didn't take care of my mouth."