I need information on Cryptococcal Meningitis in NON hiv patients. Very rare?

Question

My fiance is inbad need of help. We dont know where to turn next. its a very rare disease, if u can help us, we'd be most grateful.

he will be 64 ,has severe headaches, no anti fungal drugs, doc around here dont know much about it. trying to find treatment somewhere. will go anywhere for help.

Answer 1

It happens, but is unusual, especially in a young person. Can occur in people who take cortisone, or other agents that suppress the immune system. Sometimes just happens.
I would assume he is under treatment with anti-fungus drugs.

Answer 2

Cryptococcal meningitis (crip-toe-CAWK-kull men-in-JYE-tis) is an inflammation and swelling of the brain and spinal cord tissues, caused by a fungus called Cryptococcus neoformans. This inflammation is dangerous and leads to death in nearly all people who are not treated. Treatments do exist, however, and are quite effective.

Cryptococcal meningitis is not very common. It is rare in people with CD4+ cell counts above 100. When it does occur, it typically strikes in people with compromised immune systems, usually when CD4+ cell counts falls below 50. It does also occur, though rarely, in people who are otherwise healthy and not living with HIV.

The fungus that causes cryptococcal meningitis is common in dirt and dust, especially in dirt containing bird droppings. People are normally infected when they breathe in dirt that contains the organism Cryptococcus. In healthy individuals, this infection is usually contained in the lungs and never causes disease. Scientists believe that most cases of cryptococcal disease are caused by a reactivation of previous infection rather than a new infection. However, it is wise for people living with HIV to avoid bird roosts and other places where they may come into contact with large amounts of bird droppings.

Cryptococcus can cause other conditions, such as lung infections, which can lead to pneumonia. Outside of the lungs and the Central Nervous System (CNS), Cryptococcus can infect the kidneys, bone marrow, urinary tract, lymph nodes and the skin. When the infection spreads beyond the lungs and CNS, it is called disseminated (spread out) infection. When a person experiences disseminated infection, the most common appearance is skin lesions. These lesions may look quite different from one person to another, and can even look a lot like other common skin conditions such as molluscum or herpes. The lesions occur in about 10% of all people who are later diagnosed with cryptococcal meningitis and are sometimes the first sign that a person may have Cryptococcus-related disease.

INFOLINE 1-800-822-7422 they might be able to tell you something..

Answer 3

It is a form of meningitis, your fiance Will have headaches.

Secondly, the person before me is right in pointing out immuno-suppression. Is your fiance on any kind of steroid medication? Does he have diabetes? Transplants? Hodgkin's?

Thirdly, be absolutely certain that what they found (culture, CSF, etc) is positively cryptococcus. Do not hesitate to get a second opinion as you said the doctors you're currently dealing with do not have much experience with this disease.

Fourthly, hope these links help answer most, if not all, of your Qs.

http://www.wrongdiagnosis.com/c/cryptococcal_meningitis/intro.htm

http://medicine.ucsf.edu/housestaff/Chiefs_cover_sheets/crypto.pdf

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11470028&dopt=Abstract