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Author Topic: My introduction  (Read 1173 times)

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Offline konpisces

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  • Posts: 7
My introduction
« on: October 16, 2021, 08:23:07 am »
Hello All,

It's my turn to write a new topic in this forum. In the past, I had visited the forum and although i was an MSM, I never imagined I would start to write my experience as a newly diagnosed HIV+ person.
 
It all started a month ago when I did not feel well. I had high fever, mouth ulcers, couldn't swallow and night sweats. I was praying to God and myself "oh please, let it not be it.." I initially saw a pathologist who couldn't imagine this outcome - therefore I was treated with antibiotics. Incidentally, after 2 days I stopped having fevers and the situation was vastly improved. However, I was feeling quite weak and after 4-5 days, the fever just returned (not in the same intensity though). I had more tests, std-related ones and more generic ones. The generic ones came out first - I had a recent EBV infection so I put all my hopes that all this would be just a case of infectious mononucleosis.

Alas, this hope lasted for a couple of days only. When I went to receive the other results, they were not given to me because one of the tests was 'reactive and somehow positive'. So I  was asked to repeat the test in the context of a WB confirmation test. I felt that my world, the person I knew, the person other people knew was shattered. It ended there and I was left numb and helpless in the mercy of the new reality that I am probably HIV+.

I need to mention here that I was tested (rapid blood test) end of August and got a negative result and repeated the same test on 21/9 with the same negative result. The day people told me that I have a somewhat positive result, I repeated this same test.. it now came as slightly positive there as well... just 1 week apart from the previous negative reading

Feeling helpless, I contacted an HIV support group so they guided me towards a different hospital and a good doctor that could at least show some empathy to the situation. I repeated tests, CD4s have plummeted (280) while VL is presumably really high (waiting for the exact figure). My doctor agrees that this is a very recent infection and obviously I came through the acute phase the preceding weeks. He has prescribed Genvoya and today I took the first pill with no noticeable immediate side effects.

I don't know how I am emotionally. Sometimes, I feel I will get crushed under this burden, some other times I feel that now it is done, it cannot change, I need to live with it as I have dealt with other difficult situations in my life. However, it is not just a chronic disease, because it is intrinsically linked to sex, it is something that can be tormenting due to stigma, shelf-same, judgement from others etc.

In the initial days, I couldn't sleep at all. Now I am a bit better (with the help of an anti-histamine) managing to sleep uninterrupted for many days. I try not to think a lot but it is always there. Waiting to return to my workplace and my demanding job so that I can have the old routine running and be busy with something.

I try to keep in touch with people that have been through this. It is inspiring and comforting to know that we can make it, we can live normal lives in the end.. but also that feeling bad is part of the process.

I hope we all feel this companionship here even at this virtual setting.

Sorry for the long story. I wish you all the best. Stay happy, strong and healthy !







Online Jim Allen

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Re: My introduction
« Reply #1 on: October 16, 2021, 08:48:15 am »
Hiya,

Welcome to the forum. I'm sorry to hear about the diagnosis but glad to hear you have started treatment and that you caught the infection within its initial few months.

Please keep us posted when you have the VL result.

Quote
CD4s have plummeted (280)

What was your baseline over the past year beforehand? See on its own it's somewhat lower than average, not horrendous though, so I'm wondering what it plummeted from?

Quote
I don't know how I am emotionally. Sometimes, I feel I will get crushed under this burden, some other times I feel that now it is done, it cannot change, I need to live with it as I have dealt with other difficult situations in my life.

Quote
feeling bad is part of the process.

Yeah, I think it would be fair to say it takes most people some time to digest the news.

Anyhow, keep us posted in this thread and I hope things continue to settle for you including managing to get a good nights sleep, without the continued need for antihistamines.

Best. Jim.
HIV 101 - Everything you need to know
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Offline konpisces

  • Member
  • Posts: 7
Re: My introduction
« Reply #2 on: October 16, 2021, 09:36:29 am »
Hello Jim,

Thanks a lot for the prompt reply!

I cannot know what my actual CD4 count was, as I was negative before August/September. Therefore, there is no 'healthy' baseline. My doctor said he is not concerned at all as I am in the acute phase and I may have had 450-500 CD4s to start with as a negative person. We will closely monitor the figure now that I am on treatment, in the following months. Hopefully it will rebound

All the best!


Online Jim Allen

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Re: My introduction
« Reply #3 on: October 16, 2021, 10:41:56 am »
Hiya,

So your baseline could have been 400 or 1200  ;)

Look the CD4 count you have wouldn't really be a concern at any stage, so don't worry about it. As long as it's more than 14% or 200.

Also, now you have started treatment, your VL should start to reduce and once suppressed the CD4 measurement as a whole becomes irrelevant.

Take it easy



HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline Tonny2

  • Member
  • Posts: 2,514
Re: My introduction
« Reply #4 on: October 16, 2021, 12:40:36 pm »



         ojo.          Welcome!!…it takes time to digest such a dx, you are allowed to feel lost and worried but, as soon as you start seeing your blood work results, showing VL down and cd4 up, you will start learning how to live with hiv…now, all you have to do is to take your med as prescribed and keep looking forward, the med will take control of the virus so you can go back and try to live a normal life…don’t think about sex now, first, learn how to live with hiv then, you can go ahead and go out and meet people…when I got my dx, I went back to work and kept myself busy, that kept me alive even though I was working, with AIDS, for five years…I’m still here after 27 years since my dx.

Wishing you the best, please keep us posted and you are not alone, we are here for you to help you during this difficult first part of this new you…comprende?…hugs

Offline leatherman

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  • Posts: 7,962
  • Google and HIV meds are Your Friends
Re: My introduction
« Reply #5 on: October 16, 2021, 01:29:27 pm »
Hopefully it will rebound
actually cd4s are the last thing you need to be concerned about.

the only thing to be concerned about is taking your meds every day so you reach being "undetectable"
no, really, that's all that matters.  ;)


The cd4 count is a quantitative amount about how many cd4s you have. It's often assumed that the more cd4s you have the better health you have. However, the cd4 count is not a qualitative measure, so it is not a measure of the strength of your immune cells, nor it is a measure of how "healthy" you are. Some people are just as "healthy" at 300 as people are at 900.

also a single blood result is nothing to be worried about either. Really. One number, even if it's "terrible", means nothing and isn't going to kill you :) . It could be a lab error, a "blip", or just a fluke. Always consider you cd4 status by charting/graphing at least 3 tests over at least 6 months.

In your case then, after you get two more test results in the next 6 months, compare to see if the trend is up or down. That's how your cd4s are going, and since the HIV meds are killing off the HIV so it quits killing off your cd4s, you should see a rise in the tread.
leatherman (aka mIkIE)

Offline CircularNatural

  • Member
  • Posts: 29
  • 🇦🇷 Joined Sept 2021
Re: My introduction
« Reply #6 on: October 16, 2021, 10:38:36 pm »
Hello All,

It's my turn to write a new topic in this forum. In the past, I had visited the forum and although i was an MSM, I never imagined I would start to write my experience as a newly diagnosed HIV+ person.
 
It all started a month ago when I did not feel well. I had high fever, mouth ulcers, couldn't swallow and night sweats. I was praying to God and myself "oh please, let it not be it.." I initially saw a pathologist who couldn't imagine this outcome - therefore I was treated with antibiotics. Incidentally, after 2 days I stopped having fevers and the situation was vastly improved. However, I was feeling quite weak and after 4-5 days, the fever just returned (not in the same intensity though). I had more tests, std-related ones and more generic ones. The generic ones came out first - I had a recent EBV infection so I put all my hopes that all this would be just a case of infectious mononucleosis.

Alas, this hope lasted for a couple of days only. When I went to receive the other results, they were not given to me because one of the tests was 'reactive and somehow positive'. So I  was asked to repeat the test in the context of a WB confirmation test. I felt that my world, the person I knew, the person other people knew was shattered. It ended there and I was left numb and helpless in the mercy of the new reality that I am probably HIV+.

I need to mention here that I was tested (rapid blood test) end of August and got a negative result and repeated the same test on 21/9 with the same negative result. The day people told me that I have a somewhat positive result, I repeated this same test.. it now came as slightly positive there as well... just 1 week apart from the previous negative reading

Feeling helpless, I contacted an HIV support group so they guided me towards a different hospital and a good doctor that could at least show some empathy to the situation. I repeated tests, CD4s have plummeted (280) while VL is presumably really high (waiting for the exact figure). My doctor agrees that this is a very recent infection and obviously I came through the acute phase the preceding weeks. He has prescribed Genvoya and today I took the first pill with no noticeable immediate side effects.

I don't know how I am emotionally. Sometimes, I feel I will get crushed under this burden, some other times I feel that now it is done, it cannot change, I need to live with it as I have dealt with other difficult situations in my life. However, it is not just a chronic disease, because it is intrinsically linked to sex, it is something that can be tormenting due to stigma, shelf-same, judgement from others etc.

In the initial days, I couldn't sleep at all. Now I am a bit better (with the help of an anti-histamine) managing to sleep uninterrupted for many days. I try not to think a lot but it is always there. Waiting to return to my workplace and my demanding job so that I can have the old routine running and be busy with something.

I try to keep in touch with people that have been through this. It is inspiring and comforting to know that we can make it, we can live normal lives in the end.. but also that feeling bad is part of the process.

I hope we all feel this companionship here even at this virtual setting.

Sorry for the long story. I wish you all the best. Stay happy, strong and healthy !

Hello there, sorry to hear you are going through this, we are here if you need any support.
I'm also new to all of this (dx this past August/September) and trust me it gets better, one day at a time.
We are lucky to be living this epidemic o
in these days with so many treatment options, to the point were we can have a (nearly) normal life by getting used to getting proper treatment and being adherent to medication.
Social/psychological stigma remains to be probably the hardest thing to go by, due to all of what you mentioned. I'm sure this also gets better with time, as one learns to live with this and move on. In my case, my ID doctor and psychotherapist suggested me to really think well who to share this private topic with, since some people might not be able to understand and react well. On the other hand, you probably will feel the need of sharing it with some close people to receive support.

If you need anything just keep us posted.
Kind regards
« Last Edit: October 16, 2021, 10:42:08 pm by CircularNatural »
🇦🇷 "Hope is the only thing stronger than fear."

Offline konpisces

  • Member
  • Posts: 7
Re: My introduction
« Reply #7 on: October 17, 2021, 06:19:37 am »
Hey All,

Thank you very much for your kind replies and for reassuring me that everything is going to be OK.

You are right that I shouldn't focus to the CD4 figure right now - I am taking my medication for the 2nd day now and at least I don't feel any immediate or noticeable side effects. So I will be patient till the next blood check (in 1 month's time) and hopefully the effect of medication will be evident in both VL/CD4 count.

I need to mention that I am rather overwhelmed by the diagnosis and what it means for my life from now on and I don't even consider having sex. Even if I did, I wouldn't do it right now as I have a very big VL - wouldn't want to expose anyone to the virus.

Nevertheless, I feel that as days have passed (reaching 3 weeks after the first reactive result) I am a bit better. It seems that reality sinks in and I will gradually accept the fact and move on. I am lucky to be in these forums and also to communicate with 2 people who are hiv+ in my country. They provide good support and reassurance. I do not think of revealing my status to anybody yet (certainly not to my family as they are not capable of dealing with this - I wouldn't want to distress and hurt my elderly parents, they are better off in their ignorance. And as a matter of fact, I need to be comforted, not them right now) - it is probably very early.

Thank you again for being there!

Have a nice day

Offline leatherman

  • Member
  • Posts: 7,962
  • Google and HIV meds are Your Friends
Re: My introduction
« Reply #8 on: October 17, 2021, 07:38:01 am »
I need to mention that I am rather overwhelmed by the diagnosis and what it means for my life from now on and I don't even consider having sex. Even if I did, I wouldn't do it right now as I have a very big VL - wouldn't want to expose anyone to the virus.
Good news: after you've been undetectable for 6 months, you can no longer transmit HIV. This is know as U=U  - that's undetectable = untransmittable.

So while you might be having a time right now wrapping your head around this diagnosis, don't get caught up too much in worrying about the future. Not long from now, your numbers will be back in a good range, you'll have a great habit of popping your meds daily, you'll go back to your normal life with it's worries and plans for the future, and you'll get back to sex.
leatherman (aka mIkIE)

Offline konpisces

  • Member
  • Posts: 7
Re: My introduction
« Reply #9 on: November 28, 2021, 08:40:59 am »
Hey all,

Just a small update, got some of my first blood test results (after 1 month of ART treatment) - fortunately no adverse reactions to liver, kidneys etc.

Regarding my CD4s they have increased to 641 (from 280 on the beginning of October). :)

Based on that, I guess the therapy is successful...  :D :D :D :D and I am waiting for the exact VL figure (I had 72.000 on the beginning of October.. who knows how much it has dropped now..)

Physically I am feeling great, will start exercising soon.. emotionally I have my good and bad days.. life goes on

Take care!



Online Jim Allen

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    • HIV Lessons
Re: My introduction
« Reply #10 on: November 28, 2021, 11:49:02 am »
Glad to hear you are generally feeling well and if the meds are working the VL should have started to drop.

Keep us posted.
HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline Tonny2

  • Member
  • Posts: 2,514
Re: My introduction
« Reply #11 on: November 28, 2021, 09:20:43 pm »





        ojo.         Hi there!…glad to hear your update, I’m sure you will be UD on your next labs…yes!, life goes on…take your med/s and a good attitude is all we need to get back to live a normal life only living with a new virus in our body which it’s not control by our immune system but, thankfully, it has now an ally (med), that does the job for our immune system, taking the virus under control…let’s know how about your next lab’s result…good luck

 


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