Being Alive Newsletter, Being Alive/Los Angeles - August 1993
Ken Goldin

MAC

Symptoms like fever, night sweats, weight loss, weakness and lack of appetite can have many causes. Early in the AIDS epidemic, these symptoms were often misdiagnosed as being caused by HIV itself. Now it's known that another possible cause is Mycobacterium avium complex (MAC). A definite diagnosis requires a time- consuming culture. But if it is MAC, oral drugs are available. Treatment with clarithromycin or azithromycin is often successful, although some drug resistance has been noted. The best news is that many cases of MAC are now preventable. An oral drug, Rifabutin, reduces the risk of MAC by about half. It is recommended for persons with very low T-4 cells.

CMV

Blurry vision, floaters, or a smaller visual field can be signs of cytomegalovirus (CMV) retinitis. Symptoms usually start in one eye. If left untreated, it can rapidly progress to both eyes and blindness. Diagnosis is done by an ophthalmologist, preferably a specialist in retinal diseases. Treatment is available with ganciclovir and/or foscarnet. It is inconvenient (IV, requiring a catheter), extremely expensive, and may conflict with other medications (such as AZT). A drug delivery system which implants ganciclovir in the eye may solve some of these problems. Oral ganciclovir would be ideal. But both are still experimental. Prophylaxis is not available at this time. Regular examinations by an ophthalmologist, as well as self examination using an Amsler grid (see the February 1993 Newsletter) are recommended. CMV may also cause colitis. Symptoms include diarrhea, weight loss, lack of appetite and fever. Diagnosis requires biopsy. Treatment is similar to that for CMV retinitis.

MIND

Some people with AIDS have problems with concentration, confusion, loss of interest and slowness of thought or movement. Symptoms of brain involvement may also include headache and stiff neck, fever and seizures. Early in the epidemic, these symptoms were often called AIDS Dementia Complex and assumed to be caused by HIV. But with better diagnosis, a number of other illnesses have been shown to affect the mental processes of people with AIDS. And some are treatable and/or preventable. Diagnosis requires a specialist, and may involve a spinal tap as well as MRI or CT scans.

In addition to HIV, the most common illnesses affecting the mind are cerebral toxoplasmosis, cryptococcal meningitis and progressive multifocal leukoencephalopathy (PML). The standard treatment for toxo is pyrimethamine and sulfadiazine. A number of other drug combinations are being tested, both for treatment and for prophylaxis. Fluconazole (oral) and amphotericin B (IV) are the standard treatments for cryptococcal meningitis, and a number of other drugs may be used if these fail. Some people with low T4 cells take fluconazole regularly to prevent this and other fungal diseases.

PML is one of the nastier AIDS diseases, and it is often rapidly progressive and fatal. Definitive diagnosis requires brain biopsy. (In spite of its risks, brian biopsy may be worthwhile, if it reveals the problem is not PML, but one of the treatable conditions like toxo.) Treatment of PML with arabinoside (ara-C) may stabilize patients in some cases.

Many other processes can also cause neurological problems. The real challenge is to get rapid diagnosis and appropriate treatment from experienced specialists. So that you don't lose your mind!

LYMPHOMA

AIDS Lymphoma is primarily a cancer of the lymph nodes, and may involve asymmetrical or rapidly enlarging nodes. But lymphoma may also affect the central nervous system or brain, with symptoms such as partial paralysis, difficulty speaking or understanding and seizures. Diagnosis may involve biopsy of a lymph node, a spinal tap or a CT or MRI scan. Treatment is primarily chemotherapy, and in some cases yields complete recovery. No one knows how to prevent lymphoma.

FOR MORE INFORMATION...

If you've read this far, you'll probably want to have more information for use when you need it. One of the best sources is the AmFAR AIDS/HIV Treatment Directory, which is updated four times a year. For a free copy, call the National AIDS Clearinghouse at 800.458.5231. Sometimes knowing (or failing to know) a single word can totally change your understanding of an article. Dorland's Pocket Medical Dictionary (or a similar book) will repay its cost many times over. And it helps to have some non-AIDS manuals on your shelf, so you can look up those curious aches and bumps between doctor visits. Books such as the AMA (American Medical Association) Family Medical Guide and a guide to prescription and over-the counter drugs are quite useful.

Let's hope you never get any of the later AIDS diseases. But if you do, you can count on lots of support and information from your friends at Being Alive. And lots of good reference materials in the Being Alive library at the Silver Lake office.
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