POZ Community Forums
Main Forums => Someone I Care About Has HIV => Topic started by: Bring me sunshine on June 27, 2013, 10:03:34 am
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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
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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.
Ann
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I'm assuming he was diagnosed with CRYPTOCOCCAL MENINGITIS. Here is a link I first found when I was diagnosed with it. http://www.aidsinfonet.org/fact_sheets/view/503?lang=eng
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.
Wolfie
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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
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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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Amphotericin B is well known for its severe and potentially lethal side-effects. Very often, a serious acute reaction after the infusion (1 to 3 hours later) is noted, consisting of high fever, shaking chills, hypotension, anorexia, nausea, vomiting, headache, dyspnea and tachypnea, drowsiness, and generalized weakness. This reaction sometimes subsides with later applications of the drug, and may in part be due to histamine liberation.
I copied that from a link. It is a horrid drug but a life saving one. I had to also have an IV for fluids as I couldn't even hold water down. Eventually, it becomes easier to tolerate.
Fluconazole is the anti-fungal drug that he'll be prescribed after the infusion treatment. Not sure if there's still a medical debate about the prescribed treatment course. It was once believed that we'd need to be on it indefinitely. I have been off of it for over 2 years with no reoccurrence.
Wolfie
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Hi Sunshine.
Meningitis is definitely a serious illness. Your friend has a long road ahead - it's great that he has someone to support and care for him.
I can't speak to your friend's specific situation (there are different types of meningitis) but I can tell you that I have made a MOSTLY full recovery from a bout with fungal meningitis (and resulting brain surgery) in 2010.
I do have some problems with short-term memory..... If you tell me something chances are good I'll forget it and I frequently have to search for where I've parked my car..... but all in all life is good.
As far as AIDS vs HIV, my meningitis occurred at a time when I had a VERY good CD-4 count (over 700). But the underlying fungal infection was still present from 3 years earlier when I was in AIDS status (CD-4 of 16). Some of these bugs hang around forever, especially after a low CD-4 count allows them to get a stronghold. I still take huge doses of anti-fungal medication and will always have to.
I hope that info helps. Your friend is VERY fortunate to have someone caring for him. I'd just advise you to be patient and remember he's got a pretty major brain illness. If he says or does some weird things don't be too shocked.
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Wolfie, I'm IN AWE that you've been able to quit taking daily Fluconazole.
I'm convinced I will be with it forever. I was even thinking of having this image tattooed on my ass:
(http://drugs6.com/wp-content/uploads/2011/11/diflucan.jpg)
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Wolfie thank you so much for the info. I think he rallied after hospital admission on Friday evening and seemed to be improving - that's why yesterday and him being so acutely ill came as a shock and a setback that was not expected. He's now had ten lumbar punctures too which just seems so cruel (I had one years ago and still wince at the thought of it!) I'm so encouraged that you fought this and beat it Wolfie. I'm just glad he is in hospital and getting the care he needs. He actually said his appetite has come back a little bit today so that's good. Did you find you had really good days and really bad days Wolfie? I ask because I need to know that it's normal if he has some really horrific days and that he will come out the other side! Thank you xx
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Darryaz - first and foremost your second post made me lol :) I'm sure the daily round of tablets gets tiresome. Hope it's encouraging that Wolfie is now successfully off them two years, maybe you can hold off on the tattoo for now ;) I didn't realise that meningitis could hang around for years. My friend had told me it could be there for months so I guess I need to be prepared that frequent hospital admissions may be a part of his life and not to panic every time he is admitted. I'm glad you have made such a good recovery and thanks for taking the time to share xx
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I think getting a good treatment regimen will be important. Once that's accomplished your friend shouldn't have to suffer through frequent hospital stays. I haven't been in a hospital in almost 3 years and don't plan on going back any time soon.
If the pain is unbearable during the lumbar punctures, suggest that he request to be sedated during the procedure. It's a much more pleasant experience that way. I always insist on it now.
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Oh, and to clarify, the meningitis isn't hanging around - it's completely gone. The underlying fungal infection (that caused the meningitis) is still hanging around in my case. I've also had fungal pneumonia.
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That's so reassuring to hear - thank you darryaz! Maybe it's a case that he will have a rough few weeks until they get his meds sorted and get the infection under control. I will definitely say it to him about the lumbar punctures, that's a great idea.
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Do you know what form of meningitis they diagnosed him with? I just assumed, but you mentioned they had him on antibiotics. That only treats bacterial infections. Unless you're referring to the anti-fungal treatment as an antibiotic.
Yes, I had days where it looked like everything was going perfectly then would have setbacks...Add to that, if he recently started HIV meds, he's also dealing with reconstruction issues.
After the physical aspects were mostly taken care, then the mental aspects reared. I had severe mood swings, depression, anger issues and so forth. I still look back in horror how nasty I was with loved ones.
Wolfie
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Wolfe, he told me the exact type when he was diagnosed and I think there was a 'coccal' in the name but I can't be sure. He did say today that he is on IV antibiotics that can only be administered by drip because he is so ill and the doses need to get there fast. What do you mean by a reconstruction period? Thanks again xx
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Some of these links I'm providing are the ones I initially found and are a few years old but I read through them and it still appears relevant. I don't believe there's any outdated information. If so, someone will be sure to point it out.
http://www.aidsmap.com/IRIS-common-in-patients-with-cryptococcal-meningitis-who-start-HIV-treatment-but-benefits-of-therapy-outweigh-risks/page/1435852/
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What do you mean by a reconstruction period?
He's referring to Immune Reconstitution Inflammatory Syndrome (IRIS).
...IRIS (immune reconstitution inflammatory syndrome), [is] most commonly seen when HIVers with very beaten-down immune systems start HAART—and it’s an encouraging wake-up call, though it might not feel like one. HIV put your immune system into hibernation. When your meds kicked in and suddenly suppressed the virus, your immune system woke up hungry as a bear and overreacted to an infection that was “sub-clinical”—present in your system (and in those of lots of other folks, positive or not), but not actively making you sick.
read the whole article... (http://www.poz.com/articles/152_229.shtml)
You may also find these articles interesting:
Immune Reconstitution Inflammatory Syndrome (IRIS) Risk Factors Identified (http://www.aidsmeds.com/articles/hiv_immune_iris_1667_13453.shtml)
New Guidelines for Treating—and Avoiding—Opportunistic Infections (http://www.poz.com/articles/aids_guidelines_opportunistic_401_14917.shtml) (includes a discussion on IRIS)
Hope that helps.
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Thanks both!
I'm a little confused as in one of the articles it says that IRIS is: a flare of potentially dangerous symptoms mimicking OIs
Does this mean he doesn't actually have an OI, and also doesn't have AIDS?
You said he definitely does Ann if his CD4 count is 5 and he has an opportunistic infection like meningitis. Sorry for all the questions, I am so new to this. Thanks xx
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A CD4 count of 200 or lower on its own constitutes an aids diagnosis.
It's possible to have an OI and experience IRIS. He has definitely been diagnosed with an OI - the meningitis. He may or may not also experience IRIS.
None of this means that he won't pull through and become healthy again. He will, provided he continues to have medical support.
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Thanks both!
I'm a little confused as in one of the articles it says that IRIS is: a flare of potentially dangerous symptoms mimicking OIs
I'll try to respond later, the server keeps messing up and I already lost what I had written. :(
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Thanks so much guys, I'm a bit clearer on it now. Some people are different but for me I am anxious to know as much as possible and understand it as best I can so I know what can be expected. Your help and explanations are really appreciated. My friend is having a good day today, he said he feels that little bit stronger. It's a day by day thing for now but I'm just happy to see him beginning to feel well - let's hope it stays that way! Thank you xx
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When a person starts HAART, their immune response goes into overdrive. Because of this response, some people actually feel worse for a while and develop symptoms that mimic OI’s.
If for example, you develop severe headaches, rashes, a stiff neck and spine; then the doctor might order an additional test to determine is the patient is suffering from IRIS or an OI. In your friend's case, the doctor performed a lumbar puncture. If they discover the presence of neoformans, they can conclusively diagnose cryptococcal meningitis.
Hope this helps a little
Wolfie
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My friend is so so low today. He just messaged me and said he is broken :'( The hospital keep telling him he'll be allowed out of hospital soon but he said the goal posts are constantly being shifted as they now suspect kidney damage because of all the meds. So now, in an act of rebellion he is refusing all his pills (except the ARVs) which is terrible as his CD4 count is 73 and he is very ill with meningitis. He asked me not to try and talk him around and I won't, but what can I do guys? :(
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My friend is so so low today. He just messaged me and said he is broken :'( The hospital keep telling him he'll be allowed out of hospital soon but he said the goal posts are constantly being shifted as they now suspect kidney damage because of all the meds. So now, in an act of rebellion he is refusing all his pills (except the ARVs) which is terrible as his CD4 count is 73 and he is very ill with meningitis. He asked me not to try and talk him around and I won't, but what can I do guys? :(
Sunshine,
It appears his thinking has become irrational. My only advice is that someone (a doc or you?) needs to get through to him. I can't think of any other options. Wish I could send you a magic wand. My heart goes out to you and your friend.
m.
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Thanks so much Mitch. I feel so helpless. He said it's just a temporary act of rebellion because the doctors aren't listening to him so I hope it's just because today is a particularly low day. He can't really afford to mess around with his meds though can he, not when he is so ill? :(
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Thanks so much Mitch. I feel so helpless. He said it's just a temporary act of rebellion because the doctors aren't listening to him so I hope it's just because today is a particularly low day. He can't really afford to mess around with his meds though can he, not when he is so ill? :(
He needs his meds to get well. Period.
I wonder what he thinks is not getting through to his doc. Maybe you could start there. Find out his issues and, if rational, discuss it with his doctors.
My guess/hope is his docs eyebrows are up after his stopping meds and they will take more time to address his concerns. It's really difficult for me to add much more without knowing what specifically is bothering him.
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My friend is so so low today. He just messaged me and said he is broken :'( The hospital keep telling him he'll be allowed out of hospital soon but he said the goal posts are constantly being shifted as they now suspect kidney damage because of all the meds. So now, in an act of rebellion he is refusing all his pills (except the ARVs) which is terrible as his CD4 count is 73 and he is very ill with meningitis. He asked me not to try and talk him around and I won't, but what can I do guys? :(
You indicate that he's still very ill with meningitis? Have they not successfully treated the fungal infection? If so, he is probably dealing with the residual side effects of having this nasty fungus. In my 20+ years of being positive, this infection was the first time that I felt that my time was up. It affected my ability to have reasonable, rational thoughts and clouded my decision making capabilities.
What I recommend is to continue being a great friend and accept that his behavior, although appearing irrational, is a result of a medical condition. He might benefit from also joining this forum. I'm absolutely convinced that without the love of my beloved Miss Lily and the people here, I would have given up completely.
This fungus attacks the brain and it's probably difficult to understand how that affects every aspect of a person's existence. I've mentioned numerous times in other posts how badly I feel for the way I treated those closest to me whom only wanted to be supportive and were there for me.
Wolfie
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They've told him the meningitis could be in his system for at least a year. This seems just crazy. Now as a result of all the meds he is on he has sustained liver damage. He was hoping to get out of hospital last week and each day there seems to be a new obstacle in his way. He said he has reached a new low. We've been having a lot of banter on IM this afternoon and I've been cheering him up etc but he is in a dark place - he just wants to get out of hospital and try and lead a normal life. I don't know whether he doesn't realise/is not admitting to himself just how ill he is and that he needs to listen to the professionals. He's a grown up though and I'm not going to brandish a big stick telling him what he can and can't do. His Consultant is due to come and see him later so I am hoping she will talk some sense into him. It's hard seeing him feel so helpless. Thank you.
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Fungal infections can be accompanied by vivid and WEIRD hallucinations (akin to an LSD trip, from what I've read..... LSD was created from a fungus).
When I was hallucinating I wandered off several times..... until finally they posted a security guard outside my hospital room. Obviously I was too ill to leave the hospital but I didn't realize that at the time.
During these episodes I would not listen to doctors or nurses. It took friends or relatives (people I knew and trusted) to calm me down and make me reasonable.