POZ Community Forums
Main Forums => Someone I Care About Has HIV => Topic started by: snoofle on May 23, 2012, 05:42:32 pm
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hello all,
i'm in a somewhat dark place again with my boyfriend. just a quick history: in November 2011, he had a huge tumor on the left temporal lobe that was making him paranoid, almost on a bipolar level; he was not recognizing certain people; not remembering things, etc. It was terrible and heart wrenching for us. The initial dx was PML, but after a brain biopsy, came back negative, (and his CD4 was 34) so they sent us home to just aggressively take ARVs. Fast forward to around February 2012, and he was getting a routine scan done and they noticed this big lesion was progressing (not good when you are taking ARVs), so the neurosurgeon said he wanted to go in and said that everything was back on the table regarding a diagnosis. After a 6 hr surgery, they took out the mass b/c it was a granuloma and after testing, the pathologist determined that it was TB and "dead" crypto, so they gave him TB meds, ARVs, and high dose of antifungals.
So today, we just came back from the neurosurgeon again because he's been having headaches and theres this funny swelling on the left side at the bone slightly above the eye (the zygoma area, i think). Since that swelling is not the brain, the neuro said he can't do anything and suggested having the ID doc order a different scan to see if its fluid, or something drainable. One thing the neuro has said is that there are still multiple small multifocal lesions on the brain (but too small for surgery to be done..just must be treated aggressively with ARVs). His current CD4 is >500 with a undetectable VL. But after reading about different brain issues with HIV, I am just so scared that it is some kind of progressive disease that will eventually lead to some terrible dementia or something similar to what we experienced in November. My heart is heavy, b/c I am wondering if I am waiting for that day to come (maybe its years down the road, but still). I feel like searching for a new ID that will try to aggressively combat these lesions..I wonder if they can just go away if they are really treated heavily. He has been on Truvada and Prezista for years, which I believe is one of those drugs that crosses the blood-brain barrier.
Another piece of history is that he was born with his virus 27 years ago. And its just funny how for nearly 21 years, he never exhibited an inkling of a symptom or health issue and then as soon as his mother passed from the virus in 2006, his health just deteriorated to where he has had almost constant issues. Especially head-related issues as he has had crypto twice and now this granuloma of TB and crypto.
I just want him to be happy and healthy, b/c he deserves it after all this pain. So do the rest of us.
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Jeez Snoofle -- that's awful. My thoughts are with you and your boyfriend.
Neurological stuff is not an easy row to hoe and this case shows that even though we can get our CD4 counts back up to a reasonable level, the damage done by the virus can be long lasting.
MtD