TB in the brain

[snoofle]

So my boyfriend was diagnosed with cryptococcol meningitist end of July and was started on amphotericin and diflucan via IV..he was doing really well and had a great appetite..was taking his meds and everything.

About 1.5 weeks ago, he stopped eating, had no appetite, was constantly vomiting even if he didnt eat anything. So I finally convinced him to see his doctor this past Friday; as a result of him not eating and vomiting alot, the doc admitted him to the hospital. They did a series of tests (CTs, MRIs, a few LPs) and found some lesions/cysts on his brain pressing up against his eye (which right now, his right eye cant stay open..he seems to have lost the muscle function to keep his eye open). They did another LP to hopefully get enough cells from the spinal fluid to see whats in his brain.

Yesterday, out of nowhere, his ID doc ordered a TB skin test and this morning told my boyfriend that she thinks he has TB in the brain. I have NEVER heard of something like this and reallllly concerns and upsets me. We are still waiting for the TB skin test to be reactive or not, but she has started him on TB antibiotics anyways and moved him to an isolation room.

Like I said earlier, I have never ever heard of TB in the brain and wanted to hear from others who may know someone who had it or had it themselves or just have some good info on it. Because to me, this sounds like something he could potentially die from..I just feel constantly worried and stressed now. 

[PozBrian]

   I reacted to a TB skin test that was one of the tests I got when they took what seemed like a gallon of blood when I first tested HIV+.  I didn't think much at the time when I got the test read but apparently the size of the reaction required to to trigger treatment for TB is much smaller when HIV + than otherwise. I was promptly sent for a chest x-ray that was clear. A month later I started INH for a latent TB infection. I'm not infectious to anyone, but is important for my health.
   What I discovered over that month of research was that when HIV+ the risk of a latent TB infection becoming active changes form 5%in a lifetime to 5-10% each year. I suppose that the status of one's immune system plays a big part in that too. I also found out that there are lots of places TB lesions can show up. Lung obviously, but also the brain, digestive system and other internal organs. I was actually more disturbed by the potential risk to me from TB than HIV at that point. Active TB is relatively rare in the US so we don't think much about it usually. It is however, one of the biggest killers of people with HIV in the parts of the world where it is prevalent.

Here is a link to the CDC about TB and HIV together.
http://www.cdc.gov/hiv/resources/factsheets/hivtb.htm

I'm sorry to hear about your friend. Assuming he doesn't have a drug resistance form of TB, and he takes his  TB meds until the treatment is finished, TB is treatable.

[Ann]

Hi Snoofle,

Sorry to hear about this. TB in the brain is called Tuberculous meningitis. There's an informative article on it here.

It sounds like they've caught it early enough, so he should be fine in time. Don't forget to look after yourself while your partner's unwell, and hang in there. Good luck and keep us posted.

Ann

[snoofle]

BF had an urgent call from his doctor today and had to go in.

The good news was all TB cultures came back negative so he gets to go off all TB drugs for now

The bad news, looks like hes developed resistance to his Kaletra b/c his numbers dropped from ~300 to 134 so his doc is keeping his Truvada and adding Prezista and Norvir for a 30 day trial. Makes me so nervous, b/c hes still recovering from the crypto and all the HIV-related brain lesions. 

[Sebastian1969]

glad to hear about the TB tests.  There will come a day when the doctor gives all good news.  I hope that the med change is successful and with the next round of test EVERYTHING comes back better and nothing new is found. 
I have no experience with TB, I have tons of experiece worrying.  Try to keep your worrying to a minium and concentrate on the good things and the good news.  I have found, that with me andd my partner,  the more I worry, the more he worries and then he worries about me being worried about him--a never ending cycle.  I know it sounds tupid, but try changing the worry to "concern".  It has helped me to think of it as "I am concerned about his numbers, meds, and so on" rather than worrying about them.  I know that may not make any sense, but in my mind it does and my mind sees concern and love as being productive and worrying as sometime being harder to deal.
In short, hope all goes better, and everything gets in line for him, numbers and all.