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The Big MAC
May 9, 2000
I was diagnosed June 95 while hospitalized with PCP, was unaware of my sero status prior to this. My CD4 was 12, I was put on ddc aka hivid. I saw an aggressive dr who got zerit and epivir for me, then in January KS starting popping up everywhere, fortunately the PI's came out and the KS disappeared within a month. My T cells went up to 175 on a cocktail of zerit,epivir,Crixivan,then discontinued crix and subbed norvir/saquinavir -- yes the side effects were tough. My CD4 rose to 175-never undetectable viral load -- usually 75K. No OI's to speak of until now. My CD4 count is 2, my neutrophils (prior to neupogen injections were 400), and my viral load is 750,000. Phenotypic testing shows the virus would only be sensitive to amprenavir. Now, my regiment is ziagen, abt378, amprenavir, viramune, bactrim, zithromax, diflucan and waiting to see if my neutrophils qualify me for tenofovir which should start soon if I "pass". I for the first time ever have night sweats, fever around 100, my joints hurt a lot, I get chills, sweats and I'm ALWAYS tired. We just did a MAC culture and sinus cat scan. My doctor says MAC is treatable with antibiotics, but I've read online that the fatigue and sweats etc don't go away. Is there any hope for treating MAC effectively now, and if it's not MAC, what else could it be -- no diarrhea, but I'm on a lot of morphine for neuropathy. I do cough once in a while. Any information I would appreciate.
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Response from Dr. Feinberg
MAC is treatable and the symptoms should resolve or at least be less severe with treatment. Fatigue can also be related to anemia, which is common with MAC and advanced HIV disease, but is also treatable.
Sometimes, PCP can appear with fever and fatigue being the most prominent symptoms, and cough and shortness of breath with exertion not a big part of the picture. It may be useful to get a chest Xray and to see if the amount of oxygen in your blood goes down with exercise. If your oxygen level "desaturates" with exercise, I would follow up with a bronchoscopy. Bactrim prophylaxis is very good, but it isn't 100%. Good luck!
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