Among ancient peoples, it is said, this precious bodily fluid was used as the basis of a primitive lie detector test. The accused would be given a handful of rice and told to swallow it; if he couldn’t, it meant he was nervous – and guilty.

This slippery stuff also helps moisten and digest food, and has healing powers as well – proteins that fight bacteria, fungi and viruses and others that speed tissue healing, says Dr. Irwin Mandel, professor emeritus at Columbia University. In fact, animals that lick their wounds heal faster than those who don’t.

The fluid in question, of course, is saliva, or actually, spit – a combination of the saliva pumped out by salivary glands and all the other effluvia floating around in our drool: drugs (licit and otherwise), bugs (viruses, fungi, bacteria), hormones, antibodies and anything else small enough to seep out through tiny blood vessels into the mouth.

As unpleasant as it all sounds, spit is in. In fact, it could be the diagnostic fluid of the future, according to scientists who plan to gather next week at the National Institute of Dental and Craniofacial Research to explore spit’s many wonders – and economic potential.

Already, a number of companies are using the Internet to tout spit test kits, some of which have not been approved by the US Food and Drug Administration, which acknowledged last week it’s scrambling to keep up.

With the kits, consumers muster a little spittle, fork over $60 or so and send the sample to a lab to find out whether, say, their testosterone is tanking, their estrogen slipping, or their stress hormones soaring.

Spit, or more elegantly, oral fluid, is almost identical to the clear part of blood, but with everything – including infectious organisms – present in weaker concentrations. In the past, diagnostic tests were not sensitive enough to detect these low concentrations, but now they are.

That means that almost anything that can be detected in blood can theoretically be found in spit, too – with less pain, risk of infection and expense.

Spit testing is cheap because it’s so safe – neither patient nor health care worker can get stuck with a needle. “You don’t need a technician to get the sample,” says Dr. Stephen Sonis , chief of oral medicine at Boston’s Brigham and Women’s Hospital.

So far, spit tests have only been FDA-approved for a few limited uses – to detect the AIDS virus, illegal drugs, alcohol, a hormone that signals premature labor, and periodontal disease. There are no tests that allow a person to both collect and analyze spit at home – yet.

With the OraSure kit made by the Epitope Corporation of Beaverton, Ore., for instance, you have to go to a health care professional, who puts a toothbrush-like swab between your cheek and gums for a few minutes, then sends the sample to a lab to be tested for HIV. Insurers also use the OraSure kit to test for marijuana, cocaine, opiates or methamphetamines.

In other countries, the kit is used to collect spit for testing for hepatitis B and other diseases. And soon, this kit and others like it could be used to get DNA for testing from prisoners on parole or people at risk for genetic diseases. (It’s unlikely, by the way, that spit samples could be collected surreptitiously from, say, a coffee cup or eating utensil, because the sample would be too small and would degrade quickly without preservation.)

But as spit collecting and preservation techniques evolve, do-it-yourself spit tests could be commonplace.

Already, doctors use spit tests to monitor hormonal changes in infertile women, says Dr. Philip Fox, former clinical director at the National Institute of Dental and Craniofacial Research at NIH and now research and development director at Amarillo Biosciences Inc., in Amarillo, Tex.

Similarly, SalEst , made by Biex, Inc. in Dublin, Ca. allows women at risk of premature labor to have their spit tested by a doctor for the hormone estriol. If estriol rises before 36 weeks of pregnancy, it’s a signal the woman may go into labor prematurely.

But it is the gray area of spit testing through companies on the Web that concerns the FDA, which worries about consumers putting their trust in diagnostic tests that have not been approved.

The Great Smokies Diagnostic Laboratory in Ashville, N.C., for instance, offers spit tests for a number of hormones through its website (www.bodybalance.com). You pick the test – StressCheck, MaleCheck or FemaleCheck – pay $60 and send in your sample to see if your hormones are in the normal range. No doctors are involved.

The company claims the tests are “screening” tools, not true diagnostic tests, and admits its tests are not approved by the FDA. After inquiries from the Globe, the FDA said it is “concerned about the Great Smokies advertising and promotion as well as about other firms that advertise and promote lab tests on the web.”

While it is not illegal for labs to set up an in-house testing service and offer it through health care professionals, it is illegal is to offer this service directly to consumers, says Dr. Steven Gutman , director of the FDA’s division of clinical laboratory devices.

But “the beauty of the test” for consumers, argues Dr. Alison Levitt, a physician at Great Smokies, is precisely that “you don’t need to go to the doctor. . .People are interested in their hormone levels. People want numbers.”

Aeron LifeCycles Clinical Laboratory in San Leandro, California used to offer spit tests directly to consumers, too.

But last year, after federal and state regulators reviewed the lab’s practices, the company decided to put doctors in the loop, though you still don’t need to actually talk to a doctor to be tested, notes George Romero, customer service manager.

You simply send in your spit and $44, pick a name off a company-supplied list of doctors and that doctor signs the test order. For an additional fee, that doctor will help interpret the results, which you also get sent directly.

But how useful is it to send off some spit and get a few numbers that you try to interpret? Probably not very – in part because some hormone levels fluctuate wildly.

To test for stress, for instance, the Great Smokies lab checks levels of two hormones, DHEA (dehydroepiandrosterone) and cortisol. But cortisol levels vary over a 24-hour cycle, so if you send in only two samples a day, as the company website suggests, the potential for misinterpretation would appear to be high. In the version of the stress test sold to doctors, hormones are measured four times a day, says Great Smokies physician Levitt.

For researchers, however, it is precisely this variability in hormone levels that makes spit-tests a gold mine because they can track physiological changes almost in real time.

“When cortisol goes up in the blood, we find it in saliva within 20 minutes,” says Douglas Granger, a Pennsylvania State University behavioral endocrinologist. In studies of people before and after roller coaster rides, cortisol in saliva shoots up within 15 minutes, then returns to normal in an hour.

In other work, Granger has found similar cortisol spikes in kids experiencing family stress.

In one test, he asked mothers and kids to discuss a topic about which they disagreed, then had the kids spit into little cups. The kids judged the most anxious by other tests showed the highest rises in cortisol levels, says Granger, who has formed a research company to study spit for a number of hormones..

Ultimately, with more sophisticated spit kits, consumers could test their oral fluids at home. What spit testing offers, says, Dr. Irwin Mandel, affectionately known among researchers as “the grandfather of spit,” is “a lick and a promise” – a simple, reliable way of monitoring health.

Take care in getting tested

If you decide to have your oral fluids tested, especially by one of the services offered on line, be wary:

• When collecting the spit sample, follow package directions carefully. Typically, spit samples must be preserved quickly to remain useful. (For instance, if you’ve just eaten or drunk something, rinse your mouth and wait a few minutes before collecting spit.)
• Think about potential confidentiality problems. Anytime you reveal medical information on the Internet or send bodily fluids through the mail, your confidentiality may be at risk.
• Remember that a number of medical treatments and conditions, including drugs, radiation therapy, autoimmune problems such as Sjogren’s syndrome, can affect saliva. This could influence the accuracy of your tests.
• Most important, if you bypass a doctor and use the Internet to find a spit test service on your own, you could be jeopardizing your health. If you’re sick – or worried that you might be – call a doctor.

Problems with the shoulder, the second most unruly joint in the body after the knee, send 4 million Americans to their doctors each year.

With young people – and active older folks as well – it’s usually a sports injury. But aging, along with plain old wear-and-tear, also wreak havoc on this flexible yet delicate joint.

“The shoulder is the most mobile joint in the body, but it’s the most unstable, too. What we gain in motion, we lose in stability,” says Dr. Jeffrey L. Zilberfarb, a shoulder surgeon at Beth Israel Deaconess Medical Center in Boston.

Indeed, the shoulder is the only place where tendons pass through a tight space between bones, making it a “set-up” for trouble, says Dr. Michael Wirth, an orthopedic surgeon at the University of Texas Southwest Medical Center in San Antonio.

And trouble comes in various forms. Tendons and muscles can shred as a result of wear and tear, making arm movement agonizing or impossible. Ligaments can be so loose congenitally or become that way from trauma or over-stretching that the arm slips out of the socket, a problem called instability or dislocation, depending on the severity. The opposite can happen, too – a shoulder joint can become so stiff from scar tissue that it becomes “frozen.”

Two summers ago, Carol Furneaux, a 55-year-old musical conductor from Carlisle, tripped over her 100-pound black lab as she got out of bed one night. The dog barely noticed.

But as she landed on her outstretched right arm, she felt a searing pain through her shoulder. By morning, the acute pain had subsided, but she couldn’t lift her arm.

Dr. Alan Curtis , an orthopedic surgeon at New England Baptist Hospital, gave her the diagnosis: a torn rotator cuff, the group of muscles and tendons that stabilizes the shoulder. He stitched it up surgically through a tiny incision and Furneaux was fine.

Until last summer, that is. She’d just had knee surgery (it has not been a good couple of years, she says) and was dutifully soaking her leg in a Jacuzzi. But as she hoisted herself out with her arms, she ripped her other rotator cuff. The verdict: another surgery.

Shoulders are particularly vulnerable to problems because a lot can go wrong in a relatively compact area. For one, spurs, or small protrusions, can develop on the acromion, a bone that sits on top of muscles and tendons, which connect the muscles to bone. The spurs rub against soft tissue, resulting in irritation and pain.

“Every time you reach forward, if the acromion has spurs on it, it rubs on top of the cuff, causing impingement, ” notes Curtis of the Baptist.

Sometimes, impingement of soft tissue is simply the result of poor anatomy – the acromion angles too far down. In other cases, the space is cramped because the bursa, a sac of fluid that lubricates the shoulder, becomes inflamed. Impingement can also occur if the rotator cuff muscles are weaker than the deltoid muscles in the arm – when the arm is raised, the cuff gets pinched.

Impingement often leads to tendonitis, an inflammation of the tendons. For reasons that are unclear, tendonitis may also cause calcium deposits in the cuff, which further irritates tissues, causing acute pain.

In 95 percent of cases, tendonitis gets better with simple remedies like rest, ice, and anti-inflammatory drugs. In severe cases, an injection of cortisone into the space beneath the acromion may be needed.

But with enough wear and tear – or with a sudden, acute injury like Furneaux’s – shoulder muscles and tendons can literally tear away from the bone. Tears that only go partway through the thickness of the rotator cuff often heal without surgery, says Curtis. But tears that go all the way through or that cause persistent pain or weakness demand surgery.

Historically, this meant a four- or five-inch incision to peel the deltoid off the acromion to gain access to the rotator cuff and stitch up the tear. The deltoid is then reattached and must heal, which takes six weeks or more. If the deltoid fails to re-attach properly after surgery, it can be irreparable.

“The worst case scenario,” says Curtis, “is a failed cuff repair and a failed deltoid repair. Then you have no cuff, no deltoid. You lose the ability to raise your arm, and there’s no good answer for that.”

In recent years, doctors have increasingly turned to less invasive, arthroscopic surgery. This involves making three quarter-inch incisions through which tiny cameras and instruments are inserted to enable doctors to sew up small tears as they monitor the procedure on a screen. For medium-size tears, doctors use a “mini-open” surgical technique, in which the deltoid is split, but not detached from the bone.

Although athrosocopy makes for speedier healing – it’s day surgery versus a night or two in the hospital for the larger incision – it’s still technically difficult enough that many surgeons haven’t yet learned to do it.

Meanwhile, surgeons are turning to a growing number of high-tech approaches for other shoulder problems.

Robert Colman is a 32-year-old Brookline man who works as a “grip,” or TV and film lighting specialist. That means he’s constantly lifting and holding lights over his head. Gradually, he says, pain from his shoulder instability became intolerable.

But instead of repairing Colman’s overstretched ligaments the old way – removing pieces of the ligaments and sewing the ends together through an open incision – his surgeon, Zilberfarb, repaired it with a new technique called thermal capsular shift.

This involves inserting lasers or radiofrequency probes through tiny incisions and heating ligaments to 152.6 degrees Fahrenheit, under anesthesia. The heat shrinks the collagen in ligaments, which causes scar tissue, which in turn tightens up the ligaments.

Potentially, ligaments could stiffen up too much or stretch out again over time. So far, though, Colman’s had no problems – he’s lifting weights and says he’s “glad I had the surgery.”

Many surgeons also now shave bone spurs off the acromion (a procedure called acromioplasty or subacromial decompression) during an arthoscopic procedure. This widens the space between the acromion and the soft tissues.

Wirth and others are also testing new ways to strengthen shoulder tendons with grafts of a material called SIS (made from the lining of the small intestine in pigs).

“It’s remarkable stuff,” he says. The material, which triggers the re-growth of tendons that have become too thin, is only done experimentally at this point.

As for “frozen” shoulders, the solution is more low-tech: stretching and physical therapy. It can take a year or more to “thaw” a frozen shoulder, with exercises to increase range of motion and break up scar tissue. In really stubborn cases, it may take surgery to remove excess scar tissue.

Many people simply live with their shoulder problems, hoping they’ll go away. And often they do. But others – especially men and older people – tend to wait too long to seek help, giving up one activity after another and putting up with considerable pain.

“What brings many men into the office is wives who can’t sleep because their husbands toss and turn because of shoulder pain,” Zilberfarb says. “Guys are in denial. We’d wait until an arm falls off to come in.”

Older people, too, often wait until the torn cuff atrophies and retracts into the socket.So the moral, as Furneaux puts it, is simple: “Don’t put it off.” With her first shoulder injury, she waited almost six months to see a doctor. “I was almost at the point where they couldn’t repair it,” she says.

Now, thanks to two athroscopic surgeries, she says, “I can lift both my arms over my head. It’s like it never happened.”

Divining and treating shoulder problems

The rotator cuff is a group of four muscles and tendons that hold the shoulder together and give it strength and flexibility. Together, these tissues hold the upper arm bone (humerus) in the shoulder socket (glenoid).

Problems can be diagnosed by X-rays (including an arthrogram, in which dye is injected into the shoulder to highlight the rotator cuff) and tests like CT scans, EMGs (electromyelograms, which assess the ability of nerves to stimulate muscle contractions), MRIs, and ultrasound, says Dr. Jeffrey L. Zilberfarb, an orthopedic surgeon at Beth Israel Deaconess Medical Center in Boston.

But you may be able to figure things out more simply. Sit on a chair with your arm held horizontally in front of you, elbow bent. Have a doctor or a friend push down lightly on the top of your hand as you pretend to pour water out of a glass. If it hurts as you “pour,” your rotator cuff may be irritated and you should see a doctor, says Zilberfarb.

Most shoulder problems can be treated without surgery. Try the following:

• Rest. In bed, lie on your good side and put a pillow between your injured arm and your side to take the pressure off the shoulder. When you’re not in bed, if your shoulder is very painful, keep your arm in a sling for a few days. (But if you have a fever, get to an emergency room – you may have a “septic shoulder,” a serious infection.) Never rest so much that your shoulder gets stiff – alternate rest with gentle exercise. – Cold. If you have tendonitis, put ice on your shoulder for 20 minutes 3 times a day. Cold helps by reducing inflammation.
• Heat. If your shoulder is stiff, try heating pads and gentle exercises like standing in a hot shower with your shoulder against a wall and “walking” your fingers up the wall. Heat helps by increasing blood flow to injuried tissues.
• Medications. Over the counter anti-inflammatory drugs like ibuprofen often help. For severe cases, you may need cortisone injections or cortisone cream applied to the skin.
• Ultrasound. Like heat, ultrasound waves can warm tissues in the shoulder, improving blood flow and speeding the healing process.
• Electrical stimulation. TENS, or transcutaneous electrical nerve stimulation, can ease pain by sending electrical signals through the skin to your shoulder to block pain signals.
• Exercises – done gently – can also help heal injured shoulders and prevent further injury. Here are some:

1. Take a towel and drape it over your good shoulder. Hold the front end with your good hand. Put your bad arm behind your back and grab the dangling end of the towel. Pull gently with your good arm to raise your injured arm. Hold for a few seconds then repeat five to 10 times.
2. Rest the hand of your bad arm on the shoulder of your good arm. Take your free hand and pull the elbow of your bad arm toward your good side to stretch your bad shoulder. Hold the stretch for 10 seconds, then repeat. You can also do this lying down.
3. Take an inner tube from a bicycle tire or color-coded rubber tubing from a physical therapist. Tie it to a doorknob. Stand with your injured shoulder toward the doorknob. With your bad elbow pressed against your side, hold the end of the band and pull it toward your good side. Repeat 10 times. Then turn so that your good shoulder is toward the doorknob. Grab the tubing with your bad arm, and move it away from your body, again keeping your elbow tucked in.

Doctors have a saying: When you hear hoofbeats, think horses, not zebras, which means: if you’re stumped by a diagnosis, think of the most likely cause, not the rarest or most exotic.

But for 20 to 25 million Americans, the problem really does turn out to be zebras, that is, one of more than 6,000 rare diseases. And that rarity can be a huge problem, far beyond whatever emotional and physical toll the disease itself takes.

Geri Malter, for one, has “the wrong kind of cancer.”

When Malter, 54, an ultrasound technologist from West Newton, sees her doctor at the Dana-Farber Cancer Institute, she looks in at the beautiful new radiation oncology suite. But that’s mostly for women with breast cancer, not retroperitoneal liposarcoma, the rare fatty tissue cancer that’s growing in the back part of her abdomen.

She’s had 13 surgeries in the last 16 years to remove the tumor and faces more soon because it keeps growing back and chemotherapy doesn’t seem to help. Yet there’s nobody out there marching for her, or holding rallies or lobbying congressmen.

“I tell friends that if I can hold on and keep fighting this disease, that there just might be a ‘magic bullet’ for me,” she says. But in reality, she adds, “without research, there can’t be progress.”

Joanne Zeis, 43, an Uxbridge woman who works in her husband’s market research firm, has the wrong disease, too – a rare condition called Behcet’s syndrome, a chronic inflammatory disease that affects her blood vessels.

“It’s very frustrating” having something nobody’s heard of, she says, adding that many people simply don’t believe she’s sick. “Eventually, you learn not to talk about it. All that happens is you look like you’re trying to get attention.”

It’s hard enough getting any bad news from the doctor. But it’s even tougher if the doctor can’t figure out what’s wrong.

In fact, for many rare diseases, the first big hurdle is getting a diagnosis. “Most doctors are geared toward sore throats, blood pressure, and arthritis,” says Abbey Meyers, president of the National Organization for Rare Disorders (NORD), a nonprofit group that compiles information on 1,100 diseases.

“People go from doctor to doctor,” she says. Often, there’s no simple test.

For a third of people with rare diseases, in fact, it takes one to five years to get a diagnosis, says Stephen Groft, director of the rare diseases office at the National Institutes of Health. For 15 percent, it takes more than five years.

That uncertainty is so stressful, says Meyers, that people often feel relieved when they finally get a diagnosis – even if their disease is fatal.

“To at least know what you have is helpful,” agrees Linda DeBenedictis, founder of the New England Patients’ Rights Group. People feel anxious when they can’t put a label on symptoms, she says. It becomes “a psychological issue.”

After diagnosis, the next challenge is trying to learn more about a disease that most people, including most doctors, know nothing about. Some patients are simply handed a photocopy of a paragraph from a medical textbook, says Meyers. Increasingly, however, many are finding the information they need from a growing number of sources, including NORD (www.rarediseases.org), on the Internet.

That may be empowering, but the other side of the coin is that for many rare diseases, “there’s no treatment,” says Meyers. For some, there are clinical trials of experimental drugs, but finding them is tough, though the government’s website (http://rarediseases.info.nih.gov/ord) can help.

Even if you do find a clinical trial, the logistics of participating can be daunting. “If you’re lucky enough to get into a clinical trial, you can bet there’s none near your house,” says Meyers. “Most people with rare diseases cannot even find a doctor nearby to take care of them, so they have to travel long distances just to see a specialist.”

Some private pilots fly patients long distances for experimental treatments, but so far, most “major airlines are not stepping up to the plate,” she says.

Then there’s the medication issue. Even when drugs exist for a rare condition, they can be expensive and may not be included in the lists that health insurers use to decide which drugs to pay for.

Thanks to the Orphan Drug Act of 1983, drug companies have an incentive to develop drugs for diseases that affect 200,000 people or fewer. They get seven years of exclusive marketing rights for an “orphan” drug, starting from the date the drug is approved by the government.

But because so few people will ever buy an orphan drug, companies often charge a lot. Genzyme, for instance, makes a drug called Ceredase and a newer one called Cerezyme for Gaucher’s disease, a rare congenital disorder of lipid metabolism. But only 2,500 patients worldwide take these drugs, which cost $150,000 to $170,000 a year.

Rare diseases get short shrift on research funding, too, advocates say, though proving that is tough because the government does not track spending on many rare diseases.

(Funding isn’t exactly even-handed for common diseases, either, in part because patients with more political clout steer research dollars toward their diseases. Lung cancer, for instance gets $800 in research dollars per patient death, compared with $7,500 for breast cancer and $30,000 for HIV and AIDS, some data suggest.)

But for many people with rare diseases, perhaps the toughest problem is the isolation.

“People don’t know of anyone else who’s ever had it,” says Ed Madara, director of the New Jersey-based American Self-Help Clearinghouse. Since 1986, he says, the number of diseases with self-help groups has swelled from 332 to more than 700, a sign that doctors are increasingly able to identify rare diseases and that patients with them are getting more active.

Still, many people find that if they want support for coping with a rare disease, they have to drum it up themselves.

When Ben Cantor, 89, a retired photographer in Belmont, was diagnosed with ataxia, a coordination disorder that impairs walking, balance, and speech, he wanted a support group. There was none, so he formed his own with a fellow patient. It’s been “fantastic,” he says. “We act like a family – everybody can speak. Everything is confidential.”

Cynthia Wisniewski, 44, of Wayland, whose 6 1/2-year-old son was diagnosed with a form of ataxia called ataxia telangiectasia when he was a year old, can echo that.

“At the time we were diagnosed, there was not much on the Internet,” she says. So she and her husband banded together with three other families with kids with the disease. Those ties have been “extremely therapeutic for us,” she says.

Geri Malter, the sarcoma patient, puts it this way: What people with rare diseases really need is “attention and emotional support,” she says. “It’s just plain lonely to have a disease that nobody talks about.”

Patients banding together

Doctors have a saying: When you hear hoofbeats, think horses, not zebras, which means: if you’re stumped by a diagnosis, think of the most likely cause, not the rarest or most exotic.

But for 20 to 25 million Americans, the problem really does turn out to be zebras, that is, one of more than 6,000 rare diseases. And that rarity can be a huge problem, far beyond whatever emotional and physical toll the disease itself takes.

Geri Malter, for one, has “the wrong kind of cancer.”

When Malter, 54, an ultrasound technologist from West Newton, sees her doctor at the Dana-Farber Cancer Institute, she looks in at the beautiful new radiation oncology suite. But that’s mostly for women with breast cancer, not retroperitoneal liposarcoma, the rare fatty tissue cancer that’s growing in the back part of her abdomen.

She’s had 13 surgeries in the last 16 years to remove the tumor and faces more soon because it keeps growing back and chemotherapy doesn’t seem to help. Yet there’s nobody out there marching for her, or holding rallies or lobbying congressmen.

“I tell friends that if I can hold on and keep fighting this disease, that there just might be a ‘magic bullet’ for me,” she says. But in reality, she adds, “without research, there can’t be progress.”

Joanne Zeis, 43, an Uxbridge woman who works in her husband’s market research firm, has the wrong disease, too – a rare condition called Behcet’s syndrome, a chronic inflammatory disease that affects her blood vessels.

“It’s very frustrating” having something nobody’s heard of, she says, adding that many people simply don’t believe she’s sick. “Eventually, you learn not to talk about it. All that happens is you look like you’re trying to get attention.”

It’s hard enough getting any bad news from the doctor. But it’s even tougher if the doctor can’t figure out what’s wrong.

In fact, for many rare diseases, the first big hurdle is getting a diagnosis. “Most doctors are geared toward sore throats, blood pressure, and arthritis,” says Abbey Meyers, president of the National Organization for Rare Disorders (NORD), a nonprofit group that compiles information on 1,100 diseases.

“People go from doctor to doctor,” she says. Often, there’s no simple test.

For a third of people with rare diseases, in fact, it takes one to five years to get a diagnosis, says Stephen Groft, director of the rare diseases office at the National Institutes of Health. For 15 percent, it takes more than five years.

That uncertainty is so stressful, says Meyers, that people often feel relieved when they finally get a diagnosis – even if their disease is fatal.

“To at least know what you have is helpful,” agrees Linda DeBenedictis, founder of the New England Patients’ Rights Group. People feel anxious when they can’t put a label on symptoms, she says. It becomes “a psychological issue.”

After diagnosis, the next challenge is trying to learn more about a disease that most people, including most doctors, know nothing about. Some patients are simply handed a photocopy of a paragraph from a medical textbook, says Meyers. Increasingly, however, many are finding the information they need from a growing number of sources, including NORD (www.rarediseases.org), on the Internet.

That may be empowering, but the other side of the coin is that for many rare diseases, “there’s no treatment,” says Meyers. For some, there are clinical trials of experimental drugs, but finding them is tough, though the government’s website (http://rarediseases.info.nih.gov/ord) can help.

Even if you do find a clinical trial, the logistics of participating can be daunting. “If you’re lucky enough to get into a clinical trial, you can bet there’s none near your house,” says Meyers. “Most people with rare diseases cannot even find a doctor nearby to take care of them, so they have to travel long distances just to see a specialist.”

Some private pilots fly patients long distances for experimental treatments, but so far, most “major airlines are not stepping up to the plate,” she says.

Then there’s the medication issue. Even when drugs exist for a rare condition, they can be expensive and may not be included in the lists that health insurers use to decide which drugs to pay for.

Thanks to the Orphan Drug Act of 1983, drug companies have an incentive to develop drugs for diseases that affect 200,000 people or fewer. They get seven years of exclusive marketing rights for an “orphan” drug, starting from the date the drug is approved by the government.

But because so few people will ever buy an orphan drug, companies often charge a lot. Genzyme, for instance, makes a drug called Ceredase and a newer one called Cerezyme for Gaucher’s disease, a rare congenital disorder of lipid metabolism. But only 2,500 patients worldwide take these drugs, which cost $150,000 to $170,000 a year.

Rare diseases get short shrift on research funding, too, advocates say, though proving that is tough because the government does not track spending on many rare diseases.

(Funding isn’t exactly even-handed for common diseases, either, in part because patients with more political clout steer research dollars toward their diseases. Lung cancer, for instance gets $800 in research dollars per patient death, compared with $7,500 for breast cancer and $30,000 for HIV and AIDS, some data suggest.)

But for many people with rare diseases, perhaps the toughest problem is the isolation.

“People don’t know of anyone else who’s ever had it,” says Ed Madara, director of the New Jersey-based American Self-Help Clearinghouse. Since 1986, he says, the number of diseases with self-help groups has swelled from 332 to more than 700, a sign that doctors are increasingly able to identify rare diseases and that patients with them are getting more active.

Still, many people find that if they want support for coping with a rare disease, they have to drum it up themselves.

When Ben Cantor89, a retired photographer in Belmont, was diagnosed with ataxia, a coordination disorder that impairs walking, balance, and speech, he wanted a support group. There was none, so he formed his own with a fellow patient. It’s been “fantastic,” he says. “We act like a family – everybody can speak. Everything is confidential.”

Cynthia Wisniewski, 44, of Wayland, whose 6 1/2-year-old son was diagnosed with a form of ataxia called ataxia telangiectasia when he was a year old, can echo that.

“At the time we were diagnosed, there was not much on the Internet,” she says. So she and her husband banded together with three other families with kids with the disease. Those ties have been “extremely therapeutic for us,” she says.

Geri Malter, the sarcoma patient, puts it this way: What people with rare diseases really need is “attention and emotional support,” she says. “It’s just plain lonely to have a disease that nobody talks about.”

As a high school kid, Moe Armstrong had lots going for him. ”We were poor people,” he says, but he was captain of the football team in Bushnell, Ill., and with his high hopes for a military career, was clearly his parents’ ”dream.”

While serving in Vietnam, however, Armstrong, now 55 and living in Cambridge, says he ”cracked up.” He heard ”rustling and whistling sounds,” then voices. He had visual hallucinations, too, but thought he was just ”nervous because of the war.”

In fact, what he suffered was a pyschotic break, a loss of contact with reality – a sign of schizophrenia.

Actually a spectrum of brain diseases, schizophrenia afflicts more than 2 million Americans and is a terrifying illness. Not only are patients subject to repeated psychotic episodes including hallucinations and delusions, many also suffer a near-total deadening of emotions, a hallmark of the disease.

The disease is not curable, but it is treatable especially with newer drugs with more tolerable side effects than older ones. And with lots of emotional support from families and strict adherence to medications, some people – perhaps one in five – recover enough to live on their own and even hold down jobs.

But the more scientists look for environmental triggers, probe for suspect genes and peek into patients’ brains with scanning devices, the more they understand why schizophrenia is such a difficult disease to treat – and to live with.

”It’s terrifying,” says Dr. Daniel B. Fisher, a Lawrence psychiatrist who heads the National Empowerment Center, an advocacy group. Fisher was diagnosed with schizophrenia 30 years ago, but says he is healthy now.

But his psychoses – and hospitalizations – were horrific. ”I was convinced the TV was talking to me and me alone,” he recalls.

A neurochemist before he became a doctor, he believed he was the enzyme he was studying. At times, he became totally catatonic – withdrawn from others and unable to move or talk.

No one knows precisely what causes such bizarre thoughts – and such extreme dampening of emotion – but there are clues.

Brain studies, both of living patients and of those who have died, show abnormal circuits in two regions that govern emotions – the cingulate cortex and the hippocampus, says Dr. Francine Benes, director of the lab of structural neuroscience and the brain bank at McLean Hospital in Belmont.

The cingulate cortex is, literally, the center for gut feeling – for conscious processing of data from visceral organs such as the heart, the lungs, the stomach. Schizophrenics can’t process these emotions, which leaves them feeling like robots. ”That’s the most insidious part of this disease, the loss of the sense of self,” says Benes.

The brains of schizophrenics show enlargement of cavities called ventricles, too; some also show atrophy in other regions and decreased metabolic activity in others.

Indeed, schizophrenics often lose gray matter, the brain cells needed for thinking, says Ruben Gur, a professor of neuropsychology at the University of Pennsylvania Medical School. Memory can be affected, too.

No one knows why gray matter in the frontal and temporal lobes disappears in schizophrenia, but it may be that nerve cells deeper in the brain fail to migrate to the outer layers. It may also be due to excessive ”pruning.”

In normal adolescence, the brain destroys some neurons, perhaps so that, by destroying some connections, others are strengthened.

In people with schizophrenia – which usually strikes between age 16 and 30, there may be too much pruning, says Dr. Judith Rapoport, chief of child psychiatry at the National Institute of Mental Health.

But it’s not just anatomy that’s different in schizophrenics’ brains, it’s chemistry, too. In healthy people, there’s a balance between neurotransmitters that increase the firing of brain cells and those that dampen these signals.

In schizophrenics, there may be too much of two transmitters, dopamine and glutamate, which may lead to over-excitation of the brain – and hallucinations.

Dopamine acts by inhibiting cells that make a calming neurotransmitter called GABA. If there’s too much dopamine around, GABA shuts down. In addition, without GABA, cells that make glutatmate fire more often, further boosting excitation.

The older anti-psychotic drugs – Thorazine, Prolixin, Haldol, Navane, Stelazine, Trilafon, and Mellaril – work by blocking a type of dopamine receptor on brain cells called D-2. The net effect is to reduce the effect of dopamine, which controls some symptoms.

But blocking this receptor causes unpleasant side effects, including muscle stiffness, spasms, and tardive dyskinesia, in which the tongue protrudes and patients often smack their lips.

The newer ”atypical” drugs – Risperdal, Clozaril, Zyprexa, and Serlect – act on different receptors and seem to trigger fewer side effects. (Clozaril, however, brings its own problems, notably destruction of white blood cells, which can lead to serious infections and even death; for this reason, people taking Clozaril have to have blood tests every week or two.)

Scientists are working on new drugs in hopes of further reducing the side effects that often prompt patients to stop taking their medications.

Researchers are also trying to identify environmental factors that may trigger schizophrenia in susceptible people.

The notion that bad mothering or ”schizophrenogenic” families cause the disease has been completely rejected. Researchers now think that problems during pregnancy and childbirth, such as viral infections, prolonged labor, fetal distress, and other obstetrical complications, may be involved.

Spotting warning signs of schizophrenia is tricky, though researchers have been able to distinguish kids who later got the disease by looking at home movies taken when the children were two years old. The kids at risk were clumsier, had odd head movements, lacked emotional warmth, and seemed very shy, according to the June 1999 Harvard Mental Health Letter.

Other studies suggest that kids at risk for schizophrenia are slow to acquire motor skills, learn language, and pay attention, but these deficits are often subtle, until adolescence.

By adolesence, the signs are clearer: schizophrenics are often isolated and show ”flat affect,” or deadened emotions.

If a child shows these symptoms and there is a family history of schizophrenia and obstetrical problems, it makes sense to consult a child psycyhiatrist, says Benes of McLean.

It would also help, says psychiatrist Fisher, if people without schizophrenia were kinder to and less fearful of those who have the disease. Though lay people often assume schizophrenics are violent, they are no more prone to violence than the general population.

Families need support, too, says Mary Rappaport, whose brother has the disease.

”I lost a sister to brain cancer. As hard as that was, it’s a more painful loss in many ways to lose a loved one to one of these severe mental disorders because they are still here, but they are not the same people they used to be,” says Rappaport, spokeswoman for the National Alliance for the Mentally Ill.

And recovery can happen – and did for Moe Armstrong.

Despite hospitalizations in Vietnam and California, Armstrong said he didn’t understand he had schizophrenia, though he knew he was ”too mentally ill to live in civilization. So I went and became a bush Vet.” He lived in the mountains of New Mexico, guzzling booze, cheap food, and whatever drugs he could get his hands on.

Eventually, he weaned himself from most drugs and earned two master’s degrees. He still hears voices, but has learned that when they start, if he lies down in a quiet room, they become less insistent. He is also taking an experimental medication.

And, through his work with a mental health services organization called Vinfen, he has a mission: ”To teach other people and learn from other people how to live with major mental illness.”

Melvin Small, a 36-year-old Dorchester man who works as a parking lot cashier, has your basic guy-thing about going to the doctor.

“I’m not really into doctors and stuff like that,” he says. When he finally does go, he asks no questions because he doesn’t want to hear anything bad. “I let him tell me,” he says.

His wife, on the other hand, “goes a lot and asks lots of questions,” he adds, laughing. “If her finger hurts, she sees a doctor. She wants to know what’s going on.”

The conventional wisdom is that men, poor hapless souls, just don’t take care of themselves. And there’s some truth to that.

They’re less likely than women to see a doctor when they have chest pain, according to a survey being released today by CNN and Men’s Health magazine. In fact, one-third of men say they wouldn’t see a doctor right away even if chest pain was severe.

They’re also less likely than women to see a doctor promptly if they have shortness of breath, another sign of potential heart trouble, the survey shows.

In fact, men are less likely to go to the doctor, period, according to the National Center for Health Statistics, which says women make 471 million office visits a year to men’s 316 million. That’s 3.5 visits per year per women and 2.4 for men.

But the question is, does it matter? Are women really better off for all that contact with the medical system? Are men truly worse off for their avoidance of doctors?

Women do live longer than men – by an average of 5.6 years. But is that because they see doctors more often? Or is it female hormones, which until menopause, protect women against heart disease, the leading killer of both men and women? Or is it something else?

If men were truly neglecting their health, you’d predict a number of things; for example, they’d be expected to have cancer that is more advanced at diagnosis, at least for tumors for which there are early-detection tests.

Last week, we asked National Cancer Institute biostatistician Brenda Edwards, to check out the hypothesis that men are diagnosed at later stages of some cancers that affect both sexes, including tumors of the lung, colon-rectum, bladder, kidney, pancreas, skin (melanoma), stomach, oral cavity, and pharynx.

What she found was surprising: there’s little difference between men and women when it comes to what stage they’re diagnosed with cancer. Men do get more cancer overall, she says, and partly because of that, are more likely to die of it. But men also smoke more, and they may also be out in sun more at work or play and may encounter more carcinogens on the job.

Okay, but what about heart disease? Surely all those pot-bellied, heavy-smoking, out-of-shape guys must have more advanced heart disease than their conscientious wives by the time they finally see a doctor.

Nope. It’s women whose heart disease is typically diagnosed at a later stage, says the federal Centers for Disease Control and Prevention in Atlanta. Because they’re diagnosed later, women are more likely to die after a heart attack or a procedure called angioplasty to open clogged coronary arteries.

Part of that is that doctors often miss women’s symptoms, which can be different from the classic “male” symptoms.

 While men having a heart attack often feel as if there’s an elephant on their chests or have pain radiating down their arms, women often feel pain in the upper abdomen and have nausea, sweating, and shortness of breath, says Dr. Marianne Legato, professor of clinical medicine at Columbia University College of Physicians and Surgeons and a pioneer in the new field of gender-specific medicine.

So does all this mean men are right to eschew doctors?

Not at all. In fact, whether or not men could live as long as women if they took better care of their health, they might feel better, physically and emotionally, if they shed their resistance to seeking help.

At New England Medical Center in Boston, Dr. Sheldon Greenfield and psychologist Sherrie Kaplan, director and co-director, respectively, of the Primary Care Outcome Research Institute, have studied audio tapes of how men and women behave at the doctor’s office. The differences are striking.

Overall, the average man asks few or no questions in a 15-minute visit, whether the doctor is male or female. The average woman asks six or more.

It’s worst when men see male doctors, says Kaplan. It’s a “businesslike, gruff, clipped encounter. . .Men don’t complain. We women say, ‘Wait a minute, you interrupted me.’ ” When men see female doctors, they do a bit better – they tend to ask a couple of questions.

Women probably learn to be assertive with doctors because they have more practice. They’re told to see gynecologists regularly from adolescence on and they take their kids to the doctor and hammer away until they get the answers they need.

That assertiveness pays off. In Kaplan’s studies of people with diabetes, hypertension, or arthritis, patients who ask more questions and get more information fare better medically.

Being more willing to talk to a doctor can help in other ways, too. “In terms of quality of life, men are often worse off than women,” says Dr. Martin Miner, an internist at Harvard Pilgrim Health Care of New England in Swansea, who is studying reasons why men don’t go to doctors.

“Men have all sorts of intimacy issues,” he says, yet don’t know how to talk about feeling bereft when children grow up, or feeling dissatisfied at work or not being close to their wives.

That clamming up doesn’t help. While women are more than twice as likely to suffer from major depression, statistics show that men’s emotional pain often shows up in hidden or not-so-hidden depression, substance abuse, and suicide. Indeed, men are about four times as likely as women to commit suicide.

Over the course of a lifetime, equal numbers of men and women – roughly half in each group – have some kind of psychiatric disorder: depression, anxiety, or substance abuse, says Ron Kessler, a sociologist at Harvard Medical School. Yet a 1991 Rand study showed doctors miss 67 percent of depression in men because they’re looking for “feminized” symptoms such as crying, not the irritability and anger that men often exhibit.

The bottom line is that many men are hurting – physically and mentally – yet they don’t seek help. “Men feel less virile and strong if there’s something wrong with their bodies. It’s so sad. They don’t give themselves permission to even explore their concerns,” says Miner.

Boston University psychiatrist and trauma specialist Dr. Bessel van der Kolk likes to tell the story of his trip to Puerto Rico 10 years ago after Hurricane Hugo.

The place was humming. ”Everybody was rebuilding houses. I came into this devastated island scene of human resiliency,” he says. Then the feds swooped in, telling people how to get reimbursed and go about recovery. ”All the rebuilding stopped. People sat in homeless shelters. It interrupted the natural healing process.”

Van der Kolk has no grudge against federal assistance, or any organized mental health intervention in the wake of disasters such as hurricanes, plane crashes or the recent school shootings in Littleton, Colo., and Conyers, Ga.

What he and other skeptics do have, however, is a healthy respect for the capacity of individuals and communities to heal themselves – and a wariness about the value of sending hordes of strangers, albeit professionals, to help.

The notion that people who’ve witnessed a natural or manmade disaster need expert counseling, and fast, runs deep in America. Somehow, we’ve come to assume that without planeloads of specialists to help us get a grip, our fragile psyches would crumble in the face of the tragedies we witness.

Last year, through the Center for Mental Health Services, a federal agency, the US government spent $10 million to help states provide emergency mental health services to people in disaster areas. Private groups, like the International Critical Incident Stress Foundation in Ellicott City, Md., are also on call with ”debriefers” to zoom wherever they might be needed.

But are they needed? Is there evidence that professional intervention helps bystanders get over traumas any better than they would without it? For that matter, isn’t it possible that intervention might make some people worse, perhaps those who need time and quiet rather than venting of feelings to heal?

Psychologist Raymond Flannery, Jr., director of training at the Massachusetts Department of Mental Health, has reviewed the last 30 years’ worth of published data on crisis intervention, about 90 studies. Of these, he says, 13 found no benefit or potential harm, and the rest suggested there is a benefit.

But many of the studies are methodologically flawed. It’s rare, for instance, for researchers to randomly divide people into those who get instant help and those who don’t, partly because counselors usually assume it would be unethical to deprive people in the control group of their services.

Beyond that, there’s no unanimity on what to study: group counselling for all bystanders of a disaster or one-on-one debriefing? And what outcomes should be measured – distress a month after the intervention? Three months later? A year?

Even proponents of a kind of intervention called group debriefing concede that, as trauma specialist Robert Macy of the Trauma Center in Brookline puts it, there are no randomized, controlled trials of the technique, though some are underway.

And while crisis intervention probably does help many people – indeed, the anecdotal evidence is overwhelming – it doesn’t help everybody. Seven years ago, for instance, an El Al plane crashed into an apartment building in Amsterdam, providing researchers a chance to study crisis intervention.

Everyone participated in ”intense communal activity – dancing, singing, funerals, a lot of good holding,” and half got individual debriefing as well, says BU’s van der Kolk. Those who got the debriefing were more likely than those who didn’t to get post-traumatic stress disorder, in which one’s life becomes centered on the trauma for months or years afterwards.

”This may seem surprising,” says van der Kolk, but for some people, ”plunging into your feelings may actually interfere with the natural healing process. Biologically, stirring up the emotions will keep the body in a state of hyperarousal.

”The critical thing after exposure to trauma is to get the body to calm down…Religious ceremonies get it: sit down, hold each other, mourn with each other,” he says. ”But don’t immediately go into all the details of how painful it is.”

George Bonanno, a psychologist at the Catholic University of America in Washington, D.C., agrees. He has studied personal losses – the death of a loved one – not communal disasters. He believes that after a tragedy, ”most people are just trying to figure out what hit them and the last thing they need is a bunch of therapists arriving and telling them what has happened to them and what they need to do.”

But mere venting is not all that crisis intervention specialists actually do. A key goal, in fact, is not just emotional release but restoring a sense of community, control and safety – usually in groups, not individual sessions, though group sessions do provide the debriefers with a chance to screen people and refer those who may need more help.

”A lot of good counseling isn’t just catharsis, it’s to see what resources they have to get back to normal,” says Peter Sheras, a clinical psychologist at the University of Virginia.

People often think ”there’s something wrong with them, that they’re losing their mind,” after a disaster, says Elizabeth Carll, a Centerport, N.Y. trauma psychologist. What crisis experts do is ”reduce the impact of the crisis” by teaching people it’s normal to be stressed after an abnormal event.

Historically, the rationale for quick intervention goes back to World War II and army efforts to get combat-fatigued soldiers to feel better – and get back to the trenches. Over the years, that led to programs for firefighters and police officers.

Fifteen years ago, Maryland psychologist Jeffrey Mitchell developed what he calls critical incident stress debriefing – and later, critical incident stress management, which includes more services, including family and individual counseling.

The basic debriefing is a 7-step, 2-hour group session, usually within 10 days of the disaster, says psychologist George S. Everly, chairman of the board emeritus at the critical incident foundation in Maryland. The debriefer first asks people to recount the facts – what they saw or heard, then asks about thoughts and emotions, then about physical symptoms like insomnia and rapid heart beat.

Then comes the key, he says – ”expectancy,” the lesson that it’s normal to have intense reactions to an abnormal event.

Indeed, a 1986 study of combat-stressed Israeli soldiers during the Lebanon war showed that those who fared best were the ones who got intervention close to the front, close in time to the trauma, and who were taught that stress reactions are normal.

That basic strategy certainly helped a Boston man in his 40’s. A little over a year ago, a former employee walked into the office where this man, who wants to remain anonymous, works. The intruder assaulted one person and terrified co-workers. Three days later, Boston trauma specialist Macy ran a debriefing for those most affected.

”It definitely helped,” the man says, not just in making people feel better in the moment, but in spurring co-workers to institute a better security system.

That kind of pulling together is probably the best therapy of all, says van der Kolk. ”Trauma makes people feel helpless, so if you can do something where you feel you’ve changed the world a little so it won’t happen again, that is very helpful.”

For Monica Cianci, a 38-year-old housewife in Cranston, R.I., hell began five years ago — and getting cancer was just the beginning.

Before her cancer surgery, she’d had “no trouble with drugs.” But afterward, she wound up addicted to prescription painkillers, opiate drugs like Vicodin and Percocet.

To combat that, doctors switched her to the painkiller methadone, a legal cousin of heroin from which addicts can be weaned slowly. But she got addicted to methadone, “a worse habit than I started with.” She tried to quit, but couldn’t: “I was crawling on the floor. . . . I was pouring sweat.”

Finally, she found the Nutmeg Intensive Rehabilitation Center in Tolland, Conn., which, like a growing number of medical centers and hospitals, offers opiate addicts a new — yet expensive and not well researched — way to get off drugs.

It’s called “rapid detox” and the idea is straightforward: Give patients general anesthesia plus a drug to induce withdrawal and other medications to combat withdrawal symptoms. The patient sleeps through the worst of it — pain, racing heart, cramps — and wakes up 6 hours later, “clean” and ready to try staying that way.

Treatment of opiate dependency is a dismal business — and an urgent one, mainly because of the growing popularity of a potent new form of heroin that doesn’t have to be injected; it’s sniffed.

The government believes 810,000 Americans are now addicted to heroin, but “the real number is undoubtedly higher,” says Dr. David R. Gastfriend, a psychiatrist who heads Massachusetts General Hospital’s addiction services.

Heroin is “the new party drug, and the reason is you can sniff it,” he says. In the early 1990s, the main consumers were the “fast-living crowd, the glamour media folks . . . people in the stock trading world who were looking for instant turn-ons.” Now, it’s in suburbia, inside public and private schools. “You don’t have to go into tough neighborhoods to get it anymore.”

Getting off heroin is, of course, harder than getting started, though there are many ways to try, says Dr. Herbert Kleber, a psychiatrist who heads the substance abuse divisions at Columbia University College of Physicians and Surgeons and the New York State Psychiatric Institute.

One approach, for instance, is to switch heroin addicts to methadone, then wean them off that. Another is to use medications like naloxone, which is injected to induce rapid withdrawal, and naltrexone, which is taken by mouth to block heroin and help addicts stay clean. Behavioral therapy, residential communities, and groups like Narcotics Anonymous can also help.

But it’s extremely tough going. At one year post-treatment, the relapse rate is about 75 percent. And many addicts never get past the first hurdle — the detoxification process itself.

Opiate drugs act by binding to mu receptors in the brain; with chronic use, the brain changes to adapt to the presence of opiates, says Dr. David Simon, an anesthesiologist who heads the Nutmeg center.

Then, if opiates are stopped, biochemical chaos ensues. In particular, part of the brain called the locus ceruleus goes into overdrive, pumping out the stress hormone noradrenalin. This triggers the pain, muscle spasms, and diarrhea that give withdrawal its nicknames — “cold turkey” for the goosebumps caused by muscle spasms around hair follicles, “kicking the habit” for involuntary leg movements.

One way to pry opiates off mu receptors is with naltrexone or naloxone, narcotic “antagonist” drugs that have 140 times more “affinity” for mu receptors than heroin, which means they push heroin off these receptors and keep it off.

But the abrupt withdrawal they trigger is virtually intolerable. To remedy that, in the late 1970s, Kleber and others began using a blood pressure drug, clonidine (Catapres) to ease these symptoms by blocking noradrenalin. Since then, Yale University researchers have shown they can detoxify two-thirds of addicts in a few days by using clonidine plus naltrexone.

For addicts terrified of withdrawal, however, that’s still not fast enough — hence the appeal of anesthesia-assisted detoxification.

In 1996, Bennett Oppenheim, a psychologist in Fort Lee, N.J., imported a rapid detox progam developed overseas by the Center for Investigation and Treatment of Addiction Inc., whose parent company is now in Beverly Hills, Calif.

So far, he has supervised the process in 700 patients, including some at Pascack Valley Hospital in Westwood, N.J. He estimates that six months after rapid detox, for which he charges $6,800, 55 percent of addicts are still clean.

One of the specialists he recruited is Dr. Clifford Gevirtz, an anesthesiologist at Metropolitan Hospital Center in New York. Initially skeptical, Gevirtz, who has “detoxed” 184 patients and charges $4,500 for it, says he is now “a true believer” in rapid detox: “It’s the compassionate approach.”

Dr. David Simon of Nutmeg, who charges $3,400, claims a higher success rate among the 350 patients he has detoxed so far. Based on the first 162, he says, 75 percent are clean, though that’s at three months after detox.

Simon’s patients are treated in a free-standing center, not a hospital, and they do not stay overnight, though many stay nearby. That rankles Oppenheim: “While this is a relatively safe procedure, it requires ICU-level monitoring and an overnight hospital stay.”

Indeed, even in good hands, complications can arise.

Kleber knows of at least four deaths — two in New Jersey and two in Great Britain — though it’s impossible to calculate a mortality rate because no one knows how many people have had the procedure. Still, he says, “the body is stressed sufficiently that you may get cardiac arrhythmias” during or for several days afterward.

And sometimes — as at St. Elizabeth’s Medical Center in Boston — the cause of death is never known. Dr. Carl Gold, a St. Elizabeth’s anesthesiologist, has rapidly detoxed 40 patients, one of whom died three days later. The family refused an autopsy, so the cause of death is unclear.

Gold works with the Uniqual Network, a Framingham company that helps medical centers set up detox programs. He says 25 to 30 percent of his patients are clean a year later. Rapid detox “is not the magic bullet,” he says, but it can get patients clean, so they can try to stay that way.

In most cases, insurers don’t pay for rapid detox. But it’s such a lucrative procedure that entrepreneurs now offering it are fighting over patients and, in the case of Nutmeg and Uniqual, legally sparring with each other.

But it’s the unanswered scientific questions that are the most troubling. An unofficial review of rapid detox in 1996 by the National Institute on Drug Abuse concluded it has not been shown to be any better than other treatments in reducing relapse.

Until there are data from a controlled trial — which Kleber hopes to begin soon — rapid detox “should not be a clinical procedure,” he says. “It should be a research procedure.”

At Mass General, Gastfriend, who has used rapid detox for seven patients, worries about the potential for exploitation because “patients are so desperate.”

But at least some of those who’ve been detoxed at Nutmeg, MGH or Pascack Valley Hospital are glad they took the chance.

“Joseph,” a 39-year-old New Yorker who had a $300-a-day habit, went through rapid detox with Oppenheim. Several days later, he said he felt tired but was optimistic he could stay well. A 49-year-old Rhode Island man who had rapid detox at MGH, said the process made him feel he was “dying — I was very, very sick.”

Even so, he says, rapid detox “was the best thing I ever did” because trying to kick his habit gradually simply didn’t work. As for Monica Cianci, her gratitude toward Nutmeg knows no bounds. The staff was “absolutely wonderful,” she says. “I am absolutely clean now. I will stay clean for rest of life. . . I know I am going to be a success story.”

SIDEBAR:

New medications may reduce opiate cravings

While rapid detox has drawn the most headlines, scientists are working on other ways to help addicts get and stay clean.

Among the most exciting is a pair of related drugs that dissolve under the tongue, expected to be called Subutex and Suboxone, under joint development by the National Institute on Drug Abuse and Reckitt & Colman Pharmaceuticals, Inc. of Richmond, Va.

A close cousin of these drugs, Buprenex, is already on the market for pain control, but must be taken by injection. All three drugs contain a chemical called buprenorphine.

The new medications, expected to be reviewed later this year by the US Food and Drug Administration, will be “very significant” additions to the drugs now used to treat opiate dependency, chiefly methadone and another drug known as LAAM, says Alan I. Leshner, a psychologist who heads the drug abuse institute.

Methadone is a synthetic opiate that blocks heroin’s effects for 24 hours. It is provided to addicts only in clinics and can be used, in decreasing doses, to wean them from heroin. LAAM (l-alpha acetylmethadol) is another synthetic opiate that blocks the effects of heroin, for up to 72 hours.

In addition, naloxone, a drug given intravenously, and naltrexone, a pill, can be taken to block the effects of heroin.

NIDA has funded studies that show the two new drugs are safe and effective. Like heroin and methadone, buprenorphine latches onto mu receptors in the brain. But while heroin and methadone are full “agonists,” which means the more one takes, the bigger the effect, buprenorphine is a partial agonist, which means it has a ceiling — after a certain dose taking more has no effect.

In addition, Suboxone has an extra feature. To prevent abuse, it is hitched to naloxone, which would trigger unpleasant withdrawal symptoms if an addict were to grind it up and inject it. (Naloxone can’t be absorbed under the tongue, so it would probably not trigger withdrawal symptoms if taken as directed.)

Ultimately, Suboxone may even be dispensed by prescription for at-home use, which would be easier for recovering addicts than having to go to a methadone clinic every day.