“Bugs,” the two year old boy said as he pointed to an irritated patch of skin on his face. Mary Leitao looked closer, and although she found no visible insects, she was startled to find colored fibers sprouting from her son’s skin. It was a summer evening in 2001 that would change the lives of the Leitao family for years to come.

A medical researcher turned stay-at home mom, Leitao had never seen anything like it and neither had her husband, Edward, an internist at South Allegheny Internal Medicine.  Mary Leitao took her son to be examined by numerous doctors, but none provided a satisfactory explanation. Many suggested that it was a form of psychosis called “delusional infestation” or the conviction of being infected with parasites.

Images from the CDC study in PLoS One

Believing instead that she had discovered a new disease, Leitao named the condition Morgellons and in 2004 established a non-profit organization called the Morgellons Research Foundation (MRF).

Through the efforts of the MRF, the CDC (Centers for Disease Control and Prevention) conducted a three-year government study to research Morgellons.

The results, released last week, indicated that there was no diseased organisms or parasites present in the 115 case-patients.

The protruding fibers were found to be mostly skin fragments or clothing fibers stuck to the skin.

According to the report, the physical ailments were manifestations of “delusional infestation.”

From a recent article in WebMD, individuals with delusional infestation tend to be hyper-aware of normal body sensations and interpret them as medical illness.  The article notes, “This stress has real physical effects on the body and leads to a spiral of worsening physical symptoms…”

The suggestion that thoughts and stress can be manifested as physical maladies may be counterintuitive to anatomy-based medicine, but research increasingly supports the idea. For instance, The Washington Post reported, ”Nocebos[inert pills provided with a negative expectation] often cause a physical effect, but it’s not a physically produced effect,” said Irving Kirsch, a psychologist at the University of Connecticut in Storrs who studies the ways that expectations influence what people experience.

The CDC study, published by the open-access journal PLoS One, is available online.

The CDC also has an information page about Morgellons Disease.

The idea that the condition may be more mental than physical has always been unpopular among those who identify themselves with the disease. It has impelled them to fight on two fronts – working to gain credibility and help from the medical community and fighting the unfortunate stigma of mental illness.  With the significant setback of the CDC report, how many may be wondering, what next?  

I have compassion for those suffering from Morgellons.  No one should have to live with the painful symptoms or the mental anguish of feeling isolated, abandoned and uncared for. Yet, perhaps it’s time to consider the mental nature of the condition. Yet, perhaps it’s time to consider the mental nature of the condition. But I’m not proposing psychotherapy – but a spiritual approach.”

For instance, in the recent Jan. 29 issue of the Concord Monitor, a woman describes her recovery from disease as she changed her thought to a more prayerful perspective.  Shifting thought away from the body to seeking a greater understanding of her spiritual nature worked for her.

As the mental factors of many diseases become more widely understood, spiritual treatments, such as Christian Science, that focus on thought can be a valuable resource. The MRF website reports that fear and hopelessness are common among those who suffer from Morgellons. Working spiritually to lessen and eliminate these unhealthy mental states may be the best next step.

This article first appeared on Blogcritics.

A retired architect, Bill Scott writes about spirituality and health for Blogcritics.org and also serves as the Christian Science Committee on Publication for Washington State.

Photo by Erin DeMay via Flickr

By Jenny Gold

Kids in foster care are significantly more likely than other children to be given mind-altering drugs, according to a study of five states released Thursday by the Government Accountability Office.

The report, which focused on children in the Medicaid program, also found that foster kids were more likely to be prescribed five or more psychotropic drugs at a time and at doses that exceed the maximum FDA-approved levels — both of which carry serious health risks.

In addition, the report found that in the five states, 3,841 infants under age one were prescribed a psychotropic drug.Seventy-six of them were in foster care.

The report notes that experts say there’s no good reason for infants to take such drugs.

The report “confirms some of my worst fears,” Sen. Thomas R. Carper, D-Del., said in a Senate hearing on the issue Thursday, adding that states and the federal government have not done enough to monitor the problem.

The two-year investigation in Florida, Massachusetts, Michigan, Oregon and Texas found that foster children were prescribed psychotropic drugs at rates 2.7 to 4.5 times higher than other children in Medicaid in 2008.

Psychotropic drugs include those used to treat ADHD, anxiety, depression and psychosis.

In total, the five states spent more than $375 million in Medicaid funds for psychotropic drugs for both foster and non-foster children.

The higher prescribing rates do not necessarily mean that states are acting inappropriately, the GAO points out.  Psychotropic drugs have proven effective in treating mental illness, and the higher rate could be “due to foster children’s greater exposure to traumatic experiences and the unique challenges of coordinating their medical care.”

A recent study in the journal Pediatrics also found that foster children are prescribed multiple antipsychotics at higher rates than other children.

Ke’onte Cook, a 12-year-old from Texas who testified at the Senate hearing, was on up to five drugs at a time while in foster care, including for bipolar disorder.

The drugs made him irritable and exhausted, caused a loss of appetite and “put me in a lights-out mode 15 minutes after I’d taken them.” Cook was adopted two years ago, and is now off all of the medications he was on while in foster care.

“I think putting me on all of these stupid meds was the most idiotic thing I experienced in foster care, and the worst thing someone could do to foster kids,” Cook said. “I was upset about my situation, not bipolar or ADHD.”

The Child and Family Services Improvement and Innovation Act, passed in September, requires states to come up with protocols for appropriate use of psychotropic drugs for foster kids.

But the GAO says that’s not enough: HHS should create nationwide guidelines to “help states close the oversight gaps we identified and increase protections for this vulnerable population.” HHS agreed with the recommendations in written responses to the report.

This article was reprinted from kaiserhealthnews.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.

Living Beyond Pain

For people with severe chronic pain like Kelly Young and Teresa Shaffer–both of whom have become patient advocates–coping with agony is a fact of life. Young suffers from rheumatoid arthritis while Shaffer’s pain is linked primarily to another degenerative bone disease.

Chronic pain is one of the most difficult-and common-medical conditions. Estimated to affect 76 million Americans–more than diabetes, cancer and heart disease combined–it accompanies illnesses and injuries ranging from cancer to various forms of arthritis, multiple sclerosis and physical trauma.

Acute pain or chronic pain?

Acute pain is pain from an injury or illness, typically lasting only hours or days-and definitely not continuing once the original cause has cleared up. By contrast, chronic pain lasts months or years and continues even when the initial problem has been resolved.

Chronic pain is itself considered a disease because it reflects pathology in the brain and nervous system — which transmits pain — that persists and affects all aspects of life functioning.

Pain is defined as chronic when it persists after an injury or illness has otherwise healed, or when it lasts three months or longer. The experience of pain can vary dramatically, depending in part on whether it is affecting bones, muscles, nerves, joints or skin.

Untreated pain can itself become a disease when the brain wrongly signals agony when there is no new injury or discernable other cause.

Fibromyalgia–a disease in which pain in joints, muscles and other soft tissues is the primary symptom–is believed to be linked to incorrect signaling in the brain’s pain regions.

Finding a Doctor

The first step to deal with chronic pain is to find a physician or medical team who can accurately diagnose your condition and work with you to lessen pain.

“It’s not easy,” says Shaffer. “You have to find someone [with whom you can] build a relationship of trust and open communication.”

Dr. Russell Portenoy, chairman of pain medicine and palliative care at Beth Israel Medical Center, agrees. “You need to identify someone with a high level of knowledge and competence, good communication skills and a network of professionals with whom they work, someone who has compassion,” he says.

Dr. Paul Christo, director of the multidisciplinary pain fellowship program at Johns Hopkins School of Medicine, also suggests looking for someone who has completed at least a year-long certification in pain management. This information can usually be obtained on the doctor’s website or by asking about his or her qualifications.

Comprehensive Treatment

Experts agree that comprehensive care–which can involve medications, exercise, psychological therapy, massage, physical therapy, injections and complementary treatments, depending on the patient and condition-is essential.

“The reason we now call chronic pain an illness is that we recognize that it is more than just a sensation in the body,” Portenoy says. “It affects your ability to function as a human being, your relationships, your ability to be productive, to think straight.”

Unfortunately, because they have so often been dismissed as having a problem that’s “all in your head,” many people with chronic pain resist considering talk therapy as a part of treatment.

“A lot of people have the misconception that what I’m telling them [when recommending therapy] is that their pain is a figment of their imagination,” Christo says. “That’s not what we mean. Pain has such an emotional component and psychotherapy is extremely useful in terms of helping patients reorganize and rethink how they interpret it and how it affects their lives.”

Says Shaffer, “Pain encompasses the entire person. It’s not just in your leg or back. It encompasses the entire being of who you are and what you can do and don’t do. So physically, mentally psychologically: you have to take care of all of those things.”

The Opioid Question

Although drugs like aspirin, ibuprofen and even some antidepressants can help relieve pain, the most effective medications for most severe pain remain the opioids, like Oxycontin and morphine. Both doctors and patients tend to fear these drugs because of concerns about addiction and overdose.

However, of patients without a prior history of addiction, less than 3 percent of patients who take opioids regularly for pain will become addicted to the drugs, according to a Cochrane review of studies. Opioids are currently under a cloud because of a sharp rise in overdose death and addiction, mostly resulting from misuse by people who aren’t pain patients. The majority of overdoses occur in people who abuse the drugs along with alcohol and depressants like benzodiazepines (for example, Xanax).

Virtually everyone who takes opioids on a daily basis will become physically dependent, however: They will suffer withdrawal if the drugs are not slowly tapered. But that is not the same as addiction, which is defined by craving, negative consequences, reduced ability to function and compulsive drug-related behavior.

Kelly Young avoided opioids for years, relying on high doses of ibuprofen (Advil) and similar drugs. But when the pain became excruciating, her doctor suggested she try an opioid. “I was afraid of side effects,” she says. “One night it was really bad so I took it.” At first, she felt severe dizziness. “But in 30 minutes, the pain started going away and I thought, ‘This is amazing, this is the first time in 4-5 years that I’ve been without pain,’” she says.

To reduce the dizziness, she cut the dose, starting with a liquid usually given to children so that she could find a level that allowed her to be most comfortable. Neither Young nor Shaffer, who also manages her pain with opioids, has ever developed addiction.

Two-Way Trust

Because doctors can lose their licenses or go to prison if they don’t detect addicts who fake pain, patients find themselves in a difficult position when they want to discuss opioid medications. Asking for a drug by name, for example, which might be fine with other conditions, is seen as a “red flag.”

“When you initially go to an appointment, you don’t want to go in there saying I need medication; that’s the worst thing you can do,” Shaffer says. “You want to ask for relief. Explain to the health care provider, ‘This is my life. I can’t get out of bed. I can’t do laundry. I can’t pick up my child. I need quality of life, that’s why I’m here.’”

Shaffer adds, “You have to be upfront and honest and build that relationship of trust with your doctor.”

Shaffer also notes that it is the patients’ responsibility to store opioids in a locked box safely: Many people who abuse and overdose on these medications get them from friends and relatives who do not secure them.

Acceptance and Hope

Shaffer and Young both recommend a mix of realism, mutual support and fighting spirit when it comes to facing pain. Young runs her Rheumatoid Arthritis Warrior website and Shaffer moderates online discussion groups for people in pain at the American Pain Foundation site Experts agree that support from family, friends and people facing similar problems-so long as there’s some type of social support-is essential.

“You have to accept what your life is going to be, but you don’t have to give up,” says Shaffer, “OK, yes I have pain but that pain doesn’t own me or define who I am today.”

 Pain Management Resources

American Pain Society is a “multidisciplinary community that brings together a diverse group of scientists, clinicians and other professionals to increase the knowledge of pain and transform public policy and clinical practice to reduce pain-related suffering,” their website says.

American Academy of Pain Medicine This is a directory of physicians whose practice is primarily devoted to pain and offers its membercontinuing medical education in pain. The site’s Patient’s Center page provides general information and helps patients locate pain specialists in their area.

Health Behavior News Service is part of the Center for Advancing Health

The Health Behavior News Service disseminates news stories on the latest findings from peer-reviewed research journals. HBNS covers both new studies and systematic reviews of studies on (1) the effects of behavior on health, (2) health disparities data and (3) patient engagement research. The goal of HBNS stories is to present the facts for readers to understand and use for themselves to make informed choices about health and health care.

Insurance usually covers diagnosis, treatment of most sleep problems

By Michelle Andrews

"Insomnia" from Tacuinum Sanitatis

The diagnosis and treatment of sleep disorders have come a long way in recent years. In the past, people who snored might be advised to sew a tennis ball onto the back of their pajama top.

The “snore ball” would discourage them from sleeping on their back and might quiet their droning. Or a doctor might use the “dog index” to measure poor sleep: If your dog generally sleeps with you but by morning has left the bed more than half the time, it may be because you’re such a loud, restless sleeper that the dog has gone elsewhere for some peace and quiet.

How things have changed. Now, doctors with special training diagnose and treat more than 80 sleep disorders — from obstructive sleep apnea to narcolepsy — at special centers with labs where a patient’s every sleeping moment may be recorded and measured.

Obstructive sleep apnea, which occurs in at least 2 to 4 percent of Americans, is another matter entirely. The consequences of untreated sleep apnea can be extremely serious.

Sleep apnea is an obstruction of your airway that’s created when the muscles at the back of your throat relax during sleep. The obstruction partially or completely stops your breathing, sometimes for a minute or longer, until your brain alerts your body to wake up and you start to breathe again. This can lead to fragmented, poor sleep as well as reduced oxygen levels, which can worsen such medical conditions as high blood pressure and diabetes and increase your risk of heart attack and stroke.

Snoring is a common symptom of sleep apnea, but some experts say sleep studies may be overprescribed. “Everybody who snores doesn’t need a sleep test,” says Fred Holt, an ear, nose and throat surgeon in Raleigh, N.C., and an expert on sleep apnea who consults on anti-fraud issues for attorneys, medical auditors and investigators. The risk of developing sleep apnea is higher in people who are overweight, male, middle-aged or older, or smokers.

Medicare payments for sleep lab testing have increased from $62 million in 2001 to $235 million in 2009, according to the Department of Health and Human Services’ Office of the Inspector General, which is conducting a study to review the appropriateness of Medicare payments for them. The study is due next year.

There are home sleep tests for problem sleepers as well, and their use is also on the rise, say experts. Rather than measure more than a dozen body functions while a person spends the night in a sleep lab hooked up to sensors, home sleep tests measure only a few functions while patients sleep in their own beds. Their cost is a few hundred dollars vs. up to $2,000 for a night in the lab.

More From This Series: Insuring Your Health

Insurance will generally cover either type of test if it is prescribed by a physician. But while home sleep tests may mean a smaller bite out of your wallet if you have a co-payment or a high-deductible plan, they’re not the best choice for everyone, sleep experts agree.

“Home sleep testing should be reserved for people that are at high risk for sleep apnea and who don’t have a lot of other illnesses like obesity or heart disease that might alter the sensitivity of the test,” says Nancy Collop, director of the Emory Sleep Center in Atlanta and president of the American Academy of Sleep Medicine.

Eli Walker snores and sometimes stops breathing for short times while sleeping. Walker, 63, read that there was a correlation between high blood pressure, for which he took two medications already, and sleep apnea. He went to see an ear, nose and throat specialist who sent him to a sleep lab near his Silver Spring home. Diagnosis: moderate sleep apnea.

Watson was prescribed a continuous positive airway pressure mask, which straps onto a person’s face and directs pressurized air into the airway, keeping it open. But after three months of trying to use it, he gave up. “I hated it,” he says. “I couldn’t breathe naturally, and I didn’t like the air blowing in my nose.”

Watson finally found a good night’s sleep with a specially fitted oral appliance that looks kind of like a sports mouth guard. The appliance, which must be fitted by a dentist with special training in sleep medicine, repositions and stabilizes the lower jaw and soft tissues so that the airways stay open. It typically works best with people with mild to moderate sleep apnea.

Good news for seniors: Private insurers have covered the dental appliances for years, according to Sheri Katz, president of the American Academy of Dental Sleep Medicine. In January, Medicare began covering them, too.

The study, called WebQuit, is enrolling adult smokers nationwide.

Participation is free to eligible individuals.

The goal of WebQuit is to improve the effectiveness of online smoking-cessation programs.

“Quit-smoking websites reach millions of adults 24 hours a day. Unfortunately, these websites have low success rates,” said study director Jonathan Bricker, Ph.D., a clinical psychologist who specializes in smoking-cessation research.

“Our goal is to try to find what works and what doesn’t; what to include in these programs and how to improve them so they can become more effective,” Bricker said.

Participants will be assigned to one of two online smoking-cessation programs. The success rates of participants will then be compared.

Study participatns will:

• Be provided with a set of tools to help them quit.
• Receive step-by-step quit guides.
• Be helped to create personalized plans for staying smoke-free

Participants will be required completing online questionnaires, including one 15-minute follow-up survey.

Eligible participants must be at least 18 and not currently participating in other smoking-cessation programs, among other requirements.

The study is funded by a grant from the National Cancer Institute.

• To enroll in the WebQuit study or for more information, visit www.webquit.org