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Diagnosed this year and learning

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leatherman:

--- Quote from: Shazam9cd4 on November 10, 2022, 01:45:24 am ---One of two possible heterosexual events over past 11 years?

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maybe. probably. but it doesn't matter.

I say it that way because ending up in the hospital with PCP and 9cd4 sucks badly, and is how many people find out that they have advanced HIV (i.e. aids) and getting to that stage usually takes time (like years of undiagnosed, untreated HIV). But that's in the past (literally) and now it's time to deal with the future.

While like you, I'm 60; unlike you, I ended up in the hospital in my late 30s (36 and 38 brithdays) with PCP/AIDS. My cd4s were 5 and 7. Ugh those were dark days. But thankfully the drugs were improving, and I got better.  :o That makes it sound so much easier than it really was. God, I was sooo sick for being half-sick all the time. Recovery seemed to take for-ev-er. When you're feeling crappy, it's easy to fall into a bad mindset too and worry a lot about the future. I would tell you not to worry; but that just doesn't work. Instead I'll tell you to just keep hanging on. It's so hard to take one day at a time; but sometimes you just have to while the world rushes on.


--- Quote ---So - I am feeling more confident about my future and am hopeful ill get over
This hump...... and the paranoia over every possible thing i might encounter which would exploit my weak immunity.

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OMG. I so get this! I was such a germophobe after I got out of the hospital, and for quite a while. To be honest, that kind of health crisis probably left me with a little PTSD, but don't all tragic events? even today I think about germs sometimes. People sneezing in the grocery store really set my nerves on edge. It was really great while everyone was wearing masks and staying home because of covid.


--- Quote from: Jim Allen on November 10, 2022, 12:21:51 pm ---I did note a very clear compromise of cognitive function which was quite acute after getting out of the hospital.  That is definitely improving but do question if ill regain full function.

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we used to talk about it a lot more, back in bad ol' days when there weren't meds or just the first meds-  brain fog. Advanced HIV often brings about mild cognitive issues. So does battling pneumonia. Even being in a hospital for several days can bring about these issues.

After starting meds, HIV begins decreasing (lower vl) and tcells recover (increase cd4)....and then the kicker is that your body which wasn't fighting diseases in your body, recovers enough to start fighting which brings about side effects (including brain fog). I mentioned earlier how much I hated recovery. It seemed to last forever, though it was probably 3-6 months, and I felt like I was always half sick. It was crazy to think how crappy I felt and yet that was the sign I was recovering and was going to live. Hopefully your recovery will be easier soon and over shortly!


Now I really am a practical guy, so I have a couple pieces of advice for you.

Getting HIV treated at almost any point in the disease can mean a good future. I've got bunches of friends who like me were on the brink of death, and we're still here 30 and 40 yrs later. Take the meds, recover from the PCP, and expect to live.

Having been in a hospital twice almost dying on my birthday, I came away with the firm belief that any day you are NOT in the hospital, no matter how awful that day is, is still a great day! Maybe not today, but in the next few years, you'll probably even find yourself a happier person. Not dying in the hospital is an excellent incentive to enjoying every day and loving the people you care about.

Shazam9cd4:
Wow.   Thats a pretty amazing Journey Jim and happy you made it past 60 and likely many more years.    I cant imagine what it was like in those early days when treatment was in its infancy.  You had to be tough to get through that and are now being rewarded helping so many people deal with this virus.

Appreciate all your advice here.  I am sure you know  how important it is to be able to chat about this. 

Can i ask - between your two bouts of PCP what treatment were you on? I imagine as you said CD4 never really recovered between bouts?  What do you think prevented it coming back a third time?  Did you get on new meds/treatment plan? Any other OIs to battle through? 

I appreciate you seconding my doc on staying on the TMP prophylaxis. I had read that studies showed that reducing dose between 100-200 was relatively safe if. Ot equally so.  On the one hand id love to be off this med but on the other hand its better than a recurrent infection of PCP.  Those articles are

https://clinicalinfo.hiv.gov/en/guidelines/hiv-clinical-guidelines-adult-and-adolescent-opportunistic-infections/pneumocystis-0

https://bmcinfectdis.biomedcentral.com/articles/10.1186/s12879-021-06374-3

I also have to consider another nasty bug. When i was  out of the  hospital i got results back from a sputum sample taken just before entering.  Took a long time to get results back with sensitivity tests which showed  i also had mycoplasma lentiflavum.  Apparently quite a hard one to diagnose So more reason to stay on TMP until me CD4 count  recovers.   Doctor isnt concerned about this just monitor and treat if symptoms do show. 

Ill see that skin specialist next week.  And provide any interesting update.   Looking forward to my next round of blood tests in a Few weeks. 

Would you have any feedback on loss of innate or acquired Memory cells during low CD4?  I am curious how much of both my developed resistance over my life has been lost,  and how much of my innate resistance (ie Hep B and CMV) may be lost.  My doc also mentioned once my CD 4 counts are higher we should start talking about vaccines? .  There is not much written in these subjects.   Seems to be an emerging area of focus? 

As a final comment i am very fortunate to hAve a great wife who is very understanding.  She was certainly shocked and didnt quite understand how it was possible to contract but she has been visiting all docs with me and we are learning together. She hardcore practical and expects me overcome this...and just get on with it.   Better than a raft of  other illnesses so many others are getting. Frankly  She also likes my change of attitude - not fretting over the little things and being far more proactive about finding the good in each day.   She recently overcame breast cancer and  i was the solid anchor during that.  Now she is the solid anchor.   I cant say enough about her and how supportive she has been.  I consider myself quite lucky. 

Many thanks

Jim Allen:

--- Quote ---My doc also mentioned once my CD 4 counts are higher we should start talking about vaccines? .  There is not much written in these subjects.   Seems to be an emerging area of focus?
--- End quote ---

Here is a short list of recommended vaccines from the CDC
https://www.cdc.gov/vaccines/adults/rec-vac/health-conditions/hiv.html

It's not an emerging area of focus.

leatherman:

--- Quote from: Shazam9cd4 on November 11, 2022, 09:58:26 am ---Can i ask - between your two bouts of PCP what treatment were you on?

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ok. Some explanation. My bouts of PCP were back in 96 and 98. In those days, the meds just werenít all that good (although, I give them credit for keeping me alive!), with lots of negative side effects (for me, barfing. A lot of barfing for a lot of years). Resistance was a LOT LOT easier to get too. These days 95% adherence to daily meds gives successful treatment. In those days, missing a couple of days (from barfing, just not wanting to take the damn things if they were only going to make you feel sicker, the horrible timing of did you miss a med 2 hrs before or 2 hrs after a meal, etc) could make the meds not work very well anymore. Both times I went into the hospital I had those kinds of issues. The first time was simply meds not working well, and increasing resistance to the pills I was taking. (not to mention the depression of losing my first long-term partner to HIV/PCP/Thrush) The second time, I had had to stop a med because of the horrible side effects, and was trying to hold onto life until something new came to market - which it the day I went into the hospital. Thank goodness!

TBH there should have been a third time in the hospital. The med side effects were really bad again, and I was having a hard time taking the meds anymore. I got very sick but instead of going to the hospital (I wasnít quite at deathís door that time), I went out and got a new doctor.  ;) That got me a new prescription, and set me on the road to still being here today. ;D

I have to say I LOVE Dr. Fiorentino. Unlike my old doctor (who tbh was going through his own PTSD after losing so many patients to HIV in those early years), Dr. Marc worked with me through so many new HIV meds to get a regimen that not only worked but didnít have side effects that I couldnít handle. He was also there stuck in the hospital with me one blizzard-y weekend (Ohio in March can be a b!tch) when my second long-term partner was passing from HIV and non-hodgkins lymphoma. Although Iíve got a GREAT doc here in SC, Dr. Fiorentino will always be in my heart for helping me through a LOT of bad times.


--- Quote ---I appreciate you seconding my doc on staying on the TMP prophylaxis. I had read that studies showed that reducing dose between 100-200 was relatively safe if. Ot equally so.  On the one hand id love to be off this med but on the other hand its better than a recurrent infection of PCP.

--- End quote ---
Oh no, you donít want PCP a second time, thatís for sure! :D
I was taking BactrimÖ.for a long time. Donít forget by this time, I had had PCP twice and gone through no meds or a ton of crappy meds, had cd4s <200 for a long time and been HIV+ for almost 30 yrs. I took bactrim until I finally hit 200 cd4s when I cut it back to 3X a week (because I was developing an allergy to it) until I reached and stayed above 250 cds (I really hadnít wanted to ever have PCP again and thatís why I waited until 250). In total, I took Bactrim for 10 years!! But Iíve never had PCP again!  :P

Unfortunately I wasn't kidding about developing an allergy to bactrim. A few years ago I had a prostrate infection (A nice change of pace really. An old man having a younger man's problem. LOL) and was prescribed bactrim. Why not? It was a good friend to me for many years. Unfortunately I was completely allergic now and broke out in hives an hour later. Needless to say, I got the antibiotics switched to something else. LOL


--- Quote ---She recently overcame breast cancer and  i was the solid anchor during that.  Now she is the solid anchor.   I cant say enough about her and how supportive she has been.  I consider myself quite lucky. 

--- End quote ---
awwwww! Thatís sweet. :X Sounds like you both have good supportÖ and love! You canít be luckier than that!

Shazam9cd4:
Thank you Mr. Leatherman!   Appreciate the time for the great reply.  I am glad you found a good doctor!  Is he still your go to?   Like a good teacher they make all the difference.  I am also fortunate to have a great doctor.  No end to his capacity to listen,  respond,  research areas he may not have knowledge of on my behalf, be there for me at any tome of day or night,  and be interested in my progress.

Can i ask a few rapid fire questions and no hurry for a response.  how long have you been above 250?   Have You been on the same meds since?  Can i ask what they are?  My public hospital doc wants me to switch from Triumeq to dovato as soon as im stanle above 200.   My specialists is wary of the change providing tirumeq is working well and no substantial side effects.  I do note posts from people who made this switch with continued positive results.     

Finally - as you CD4 counts increased towards the 200 level did you notice a clear strengthening of immunity and reduction of minor ailments like skin rashes,  fungal infections et al?  As my CD4 went above 50 that seemed to clear up an occasional thrush so that not impacting me anymore. My little off skin lesions came and went.  So that seems to have cleared.   My itchy rashes (mainly on mid back,  shoulders, back of upper arms, back of neck and around eyebrows &  sides of nose) is less frequent,  no longer embarrassing, and more easily managed -  but still flaring up every few days.

Thats all!   Enjoy your day! 

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