Mystery AIDS-like disease discovered by scientists in patients over 50… but it is NOT contagious

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By Associated Press Reporter

PUBLISHED:20:21 EST, 22 August 2012| UPDATED:23:32 EST, 22 August 2012


  • Disease has affected  mostly Asian-born patients and some in U.S.
  • Genetic and environmental  factors may trigger the disease
  • Disease does not run in  families or spread person-to-person
  • Some patients have died  of overwhelming infections

A mysterious new disease  has left scores of people in Asia and some in the U.S. with AIDS-like  symptoms  even though they are not infected with HIV.

The patients’ immune  systems become damaged, leaving them  unable to fend off germs as healthy people  do. What triggers this is unknown  but the disease does not seem to be  contagious.

It appears to be another  kind of acquired immune deficiency that is  not inherited and occurs in  adults.

However it doesn’t spread  the way AIDs does through  a virus, said Dr Sarah Browne, a scientist at the  National Institute of Allergy  and Infectious Diseases (NIAID), which is part of  the National Institute of Health.

Dr. Sarah K. BrowneDr Sarah K. Browne, right, talks with patient Kim Nguyen  at the National Institute of Health. Researchers have identified a mysterious  new disease with AIDS-like symptoms even though they are not infected with HIV

She helped lead the study  with researchers in Thailand and  Taiwan where most of the cases have been found  since 2004. Their report is in  Thursday’s New England Journal of  Medicine.

‘This is absolutely  fascinating. I’ve seen probably at least  three patients in the last 10 years or  so’ who might have had this, said Dr.  Dennis Maki, an infectious disease  specialist at the University of Wisconsin in  Madison.

It’s still possible that  an infection of some sort could  trigger the disease, even though the disease  itself doesn’t seem to spread  person-to-person, he said.

The disease develops  around age 50 on average but does not  run in families, which makes it unlikely  that a single gene is responsible,  Browne said. Some patients have died of  overwhelming infections, including some  Asians now living in the U.S., although  Browne could not estimate how many.

Kim Nguyen, 62, a  seamstress from Vietnam who has lived in  Tennessee since 1975, was gravely ill  when she sought help for a persistent  fever, infections throughout her bones  and other bizarre symptoms in 2009. She  had been sick off and on for several  years and had visited Vietnam in 1995 and  again in early 2009.

NIHResearch from the NIAID, part of the National Institute  of Health (pictured), reveals the disease causes patients’ immune systems to  become damaged, leaving them unable to fend off germs. What triggers this isn’t  known

‘She was wasting away from  this systemic infection’ that at  first seemed like tuberculosis but wasn’t,  said Dr Carlton Hays Jr., a family  physician at the Jackson Clinic in Jackson,  Tennessee. ‘She’s a small woman to begin  with, but when I first saw her, her  weight was 91 pounds, and she lost down to  69 pounds.’

Nguyen (pronounced ‘when’)  was referred to specialists at  the National Institutes of Health who had been  tracking similar cases. She spent  nearly a year at an NIH hospital in Bethesda,  Maryland, and is there now for  monitoring and further treatment.

‘I feel great now,’ she  said on Wednesday. But when she was  sick, ‘I felt dizzy, headaches, almost fell  down,’ she said. ‘I could not eat  anything.’

AIDS is a specific  disease, and it stands for acquired  immune deficiency syndrome. That means the  immune system becomes impaired during  someone’s lifetime, rather than from  inherited gene defects like the ‘bubble  babies’ who are born unable to fight  off germs.

The virus that causes AIDS  – HIV – destroys T-cells, key  soldiers of the immune system that fight germs.  The new disease doesn’t affect  those cells, but causes a different kind of  damage. Browne’s study of more than  200 people in Taiwan and Thailand found  that most of those with the disease make  substances called auto-antibodies that  block interferon-gamma, a chemical signal  that helps the body clear  infections.

Blocking that signal  leaves people like those with AIDS –  vulnerable to viruses, fungal infections  and parasites, but especially  micobacteria, a group of germs similar to  tuberculosis that can cause severe  lung damage. Researchers are calling this  new disease an ‘adult-onset’  immunodeficiency syndrome because it develops  later in life and they don’t know  why or how.

‘Fundamentally, we do not  know what’s causing them to make  these antibodies,’ Browne  said.

Antibiotics aren’t always  effective, so doctors have tried a  variety of other approaches, including a  cancer drug that helps suppress  production of antibodies. The disease quiets in  some patients once the  infections are tamed, but the faulty immune system is  likely a chronic  condition, researchers believe.

The fact that nearly all  the patients so far have been Asian  or Asian-born people living elsewhere  suggests that genetic factors and  something in the environment such as an  infection may trigger the disease,  researchers conclude.

The first cases turned up  in 2004 and Browne’s study  enrolled about 100 people in six  months.

‘We know there are many  others out there,’ including many  cases mistaken as tuberculosis in some  countries, she said.

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Categories: Emerging

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