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Author Topic: need a true HIV practitioner  (Read 2816 times)

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Offline snoofle

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  • Posts: 54
need a true HIV practitioner
« on: May 29, 2013, 10:42:36 pm »
Hello all, its been a while since my last post. I want to provide a brief update on my S/O. Last July, he suffered a grand mal seizure at work and was found to have a mass growing on his pituitary gland that is hindering all hormone development. I previously recounted that he had a craniotomy to remove a mass from his left temporal lobe the year prior to the seizure that apparently contained crpyto and TB. He was on TB meds for ~9 months, but did not get better or worse and was ultimately taken off of the TB regimen.

Anyways, fast forward to yesterday and he had a surgery through the nose to attempt to remove and biopsy the pituitary mass. Apparently, the original hospital that did the big craniotomy "lost" his samples and could not definitely say if it was crypto and/or TB or not.

Today, his ID doc (at a different hospital) said that the mass is proving to be both "fungal and microbial" in nature, which indicates both crypto (b/c he has had had crypto at least 3x in his life) and possibly TB. Its the same freaking diagnosis, but noone can explain WHY these masses are growing. I am at my wits end. His CD4 is about 600 with an undetectable VL so that does not explain the constant OIs.

I need to find a real HIV expert in the field, both clinical and academic. I am so lost, b/c these masses keep growing, but noone knows why. I just need to know how/where to find the best of the best in the field. I dont care if we have to travel..at this point, we just need some answers.

Offline buginme2

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  • Posts: 3,426
Re: need a true HIV practitioner
« Reply #1 on: May 30, 2013, 03:05:42 am »
American Academy of HIV Medicine has a search link on their website to do a search for HIV specialists.  It can be found at


Not every HIV doctor is listed but its a good place to start. Otherwise it would be helpful to know where you are to make a recommendation.
Don't be fancy, just get dancey


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