POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: wolfter on August 03, 2010, 12:52:19 am
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I'm new to this forum and decided to join after reading comments that seem to help. I'm a member of a couple of sites that don't appeal to me. I'm glad my doctor gave me a free copy of POZ magazine. I did laugh when he asked if I needed a bag for it though. I didn't.
Now my Issue: I tested poz in college 20+ years ago. We didn't have a great prognosis in those days and I lost most of those special people in my life. I managed to finish school but went on to behave like my life was almost over not realizing that I'd be here 2 decades later. I have a great ID doctor but I have a couple of issues that he's not able to an address. I had great counts and have been on meds for about 6 years and was undetectable. Last Spring, my t count dropped to 46 with a VL off the scale. New genotyping indicated that I had become immune to my meds. During this period I got sick with cryptococcal meningitis. 3 weeks in the hospital followed by strong doses of Fluconazole still to date. Surprisingly, I'm undectable with a t count of 250. My concerns now are that my vision has not returned. I've had lots of medical issues but this one really took its toll. Are there any others out there who've been through this illness or been a caretaker to someone who had it?
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Hey Wolfer,
First, welcome to the forums. Glad you have joined in.
Regarding your bout of cryptococcal meningitis, I haven't had that particular variety.
I was diagnosed with viral meningitis in 1980. My first doctor believes it was my seroconversion.
The symptoms, as described at AIDS.org., of the two are pretty much the same.
The first signs of meningitis include fever, fatigue, a stiff neck, headache, nausea and vomiting, confusion, blurred vision or sensitivity to bright lights. The symptoms may come on slowly.
In my case, they didn't come on slowly and wound up in a hospital for a week, getting shots of demerol in my butt.
I am sorry to hear your eyesight seems to be affected. I have tried to find information about that, but haven't had any luck
I hope you check back in and let us know how things are going.
What does your doctor say about the eyesight issue? Does he/she have any ideas?
HUGS,
Mark
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Wolfer, welcome to the forums. So sorry to hear about your crypotococcal meningitis and the impairment it had on your vision. My partner had this as well many years back. I can perhaps get some information from him and pass it along. He has had about everything HIV can offer and survived superbly. A bionic man.
Let us know how you are doing!
Best,
Jeff
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Thanks guys. I had an MRI done last week and find out tomorrow the results. There isn't a lot of information about this OI since it doesn't occur too often any longer. I would love some input from someone who has survived and can share their experiences with me. My doctor is GREAT but I don't think he completely understands my description of what's happening. He even suggested it could be emotional issues which it isn't. I've lived with this virus longer than I lived without it and certainly have dealt well with it until now. Thanks again for responding.
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i got spinal meningitis at the same time i got infected with hiv.
my head hurt soo bad it felt like it wanted to explode and it
came very damm close to taking me out.
it took a long time to recover but i had no lingering issues from it.
sorry to hear you went thru it.
it was the most painful thing i ever went thru so
anyone who has had to endure it i feel for
good luck and i hope you recover
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You must stay on top of this one the Cryptoccol Menengitis it is a deadly disease that needs a lot of attention and they need to get your numbers up pretty fast so your body can battle this thing.
I had it when I first found out along with a lot of other things at the same time. If you read my profile you will see that. Its rare anymore that anyone gets this crypto and I am sorry it got in your system. Just keep taking the fluconase at regular times and all your hiv meds at the same time every day and you should be able to kick this thing. you will have to take the flucanase a long time to keep it from coming back on you also as you build up your immune system and after that also. Just as precautionary after it is kicked youwill have to take it a while.
Good luck my friend and stay in contact with me so I know how you progress through this. I am not trying to scare you it is just from what i had to go through that i am letting you know this stuff.
Jerry :)
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Thanks for all the positive comments. My latest results from this spinal tap showed that the fungus is probably gone. I'm staying on the drugs for this illness for a little longer. I was sent to a neurologist to determine if permanent damage was done from this illness. The surprising result was a mass behind my left eye that is pressing against my optic nerve. So yet another specialist who ordered a CT scan and can't determine exactly what the mass is. I'm going in for explorative surgery. It's strange to have 2 issues at the same time that caused vision issues but at least my id doctor stayed on top of it and ordered more testing. Again, thanks for all the positive comments. I've joined several different online support sites, and this is the only one so far that I find useful.
Wishing you all good health!