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Concerns over a dear friend with meningitis, a low CD4 count & other stuff!

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Bring me sunshine:
Hi everybody,

I'm new here and I'm so glad to have found such a wonderful and welcoming community where hopefully some of my questions can be answered. A very dear friend of mine was diagnosed in late April 2013. He was admitted with suspected TB initially and then when the tests came back it turns out he has meningitis and then the shock diagnosis of HIV. He was in hospital for 2/3 weeks and seemed to be doing ok, however at the weekend he had three massive seizures, his CD4 count was 5 (yes really) and they could not contain his meningitis. He is now back in hospital. I care for my friend so deeply and we have been there for each other through thick and thin. Right now I'm getting together a care parcel with lots of books, sweets and funny comics etc and we're in regular contact.

I am reading compulsively on the subject - I can't help it, knowledge is power to some degree right? But all the articles seem to suggest that meningitis actually goes hand-in-hand with AIDS rather than HIV? He said he just has HIV so I'm not to worry but I can't help it. I'm not trying to catch him out or anything, I suppose I just need to know how bad is this? Can he make a complete recovery from this and live a happy and healthy life with HIV? His CD4 count on admission was 5 although that is now 70 which seems like good progress right? I guess what I'm asking for is some advice as to whether anyone else has been through meningitis and what to expect? I am staying as strong as possible for my friend (I have the odd cry in private but I think that's ok right?) but I would like to be as informed as possible.

I thank you so much if you've read this far and thank you even more if you take the time out of your day to reply. Thank you  :-* xx

Hi Sunshine, welcome to the forums.

Your friend may have said he has hiv - which he does - but he's also been diagnosed with CD4s under 200 (plus an opportunistic infection) and that means he also has aids.

Hospital is the best place for him right now - and yes, he can make a good recovery. He's already starting to improve CD4-wise.

Best wishes for both of you.


I'm assuming he was diagnosed with CRYPTOCOCCAL MENINGITIS.  Here is a link I first found when I was diagnosed with it.

A few shorts years ago, I was also diagnosed with this with a CD4 in the single digits and a viral load of 6.7 million.  I already had an AIDS diagnosis in 89 but this would have been a qualifying opportunistic infection that would indicate an AIDS diagnosis.

After his initial 22 day infusion treatment, a spinal tap would indicate if the fungus is still present.  If so, another round of treatment might be needed to eliminate it.  They'll probably also put him on continuing medication (I can't recall what I was on but will try to remember), until his numbers are in the safe zone (above 200).

I was deathly ill with this infection that caused temporary blindness and deafness.  I regained a lot of those abilities.  Depending on how bad the infection was, it can cause encephalitis of the brain.  Hopefully, he was treated early enough to prevent this. 

Overall, I've pretty much recovered physically from this.  I'll be glad to share my experiences with you if you have additional questions.  As bad as it affected me physically, the emotional and mental aspects were much worse for me.  It totally affected my personality and I wasn't exactly a pleasant person to be around during that period.

Best wishes.


Bring me sunshine:
Ann, thank you so so much for replying to me. The uncertainty has been driving me crazy because I did ask him and him being him said no - I totally accept that, it's a very new diagnosis which he needs to get his own head around too. I suppose I have been reading so much about it I sensed that he is very very ill. He has lost five stone in the last year and my instinct told me some time ago that he was not well. For selfish reasons too I need to know how bad it is so I can prepare myself. Thank you for clarifying what I had suspected - I can't say I'm happy about it but I can at least now put my uncertainty to bed and continue to be the loving friend I always have been. Thank you also for the reassurance that he can come back from this. He phoned me earlier and said he really thought he was going to die yesterday but is feeling a bit better today. I guess it's going to be a bit of a rollercoaster until the meningitis is cleared right? xx

Bring me sunshine:
Wolfie thank you so much for being so generous with your own account. I'm glad to hear you are better and recovered well! My friend initially did the 21-day course of antibiotics but is now on a 2nd course. He spent all of yesterday projectile vomiting and said he had the worst headache he has every experienced. He also told me on the phone earlier that his hearing has been quite badly affected. He is perkier today but he thought he was genuinely going to die yesterday and was very frightened. Thank you so much for that link, I shall read it and send it to him. xx


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