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Author Topic: Tested Positive on Jan 16 2024  (Read 18407 times)

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Offline Joebilly73

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Tested Positive on Jan 16 2024
« on: February 20, 2024, 07:08:37 am »
Good Morning,

I have alot of questions.

So I was admitted to a hospital for Acute Respatory failure and diagnosed with Pneumonia. They drew labs and discovered I was HIV 1 +. My CD4 was 27 and CD4% 2 , Viral Load was 300,000.

I was given a series of antibiotics and had my first appointment with a infectious disease doctor about 1.5 weeks after my release. I was then started on Biktarvy.

Everyone is saying I will be fine but I know that those numbers meant I had full blown AIDS.

Am I going to be ok?
Will I be able to get to a undetectable leave and a healthily CD4?
I honestly feel a lot better today then I did before entering the hospital.


Im guessing I have been positive for at least a decade, I am married and never cheated on my wife, she thankfully has tested Negative and her 3 month follow up is soon. Its believed that I contracted this through my job, I must have had an exposure that I just never realized. Is it safe for us to be intimate? Using protection and such? Or should we be waiting for my numbers to improve?

Thanks
Scared to Death

Offline daveR

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Re: Tested Positive on Jan 16 2024
« Reply #1 on: February 20, 2024, 07:19:44 am »
Hi

Welcome to the forum, always seems strange to say that as none of us want to be here.

Short answer, as long as you take your medication daily, and follow up with the Doctors appointments you will be fine. Your numbers are not good but if you look through this forum there are many people who started with worse and they are OK.

Biktarvy is an excellent treatment, I would expect that viral load to be dramatically reduced very quickly. Your CD4 count will increase as and when it does. Some people bounce back quicker than others.

For sex with your wife, use condoms until you have been undetectable for at least 6 months, possibly consider your wife taking PrEP.

I am sure one of the more experienced positive members will be along with more reassurance than I have to offer. I myself have been positive for only 8 years or so. Some on here for decades.

Once again, take the one pill as instructed. Avoid drugs that may cause interactions, including minerals with Biktarvy and live your life.

All the best
Dave

Offline Jim Allen

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Re: Tested Positive on Jan 16 2024
« Reply #2 on: February 20, 2024, 07:37:44 am »
Hiya,

Sorry to hear about the diagnosis and how sick you had become but glad you have access to healthcare and are now starting to feel better. :)

Quote
Will I be able to get to a undetectable leave

Sure, you should see a suppressed VL (below 200 copies) within a few months. Some people get there within a few months and others take 6 months but you will get there.

Quote
a healthily CD4?

Your CD4 count will likely improve but it's not as important as suppressing the viral load, it may also take time and keep in mind it's not a measurement of overall health.

Quote
Its believed that I contracted this through my job, I must have had an exposure that I just never realized.

Unlike some viruses, HIV is fragile and extremely limited in the ways it is transmitted, it also doesn't matter what happened, you are living with it and we are here to support you and the focus is getting back to health and living your life.

Quote
Is it safe for us to be intimate? Using protection and such? Or should we be waiting for my numbers to improve?

In short, if you do decide to have sex you should be using condoms correctly and consistently, with no exceptions and your wife could also consider PrEP, a combination of medications taken usually in a single pill daily by HIV-negative people to reduce the chance of getting HIV from having sex.

However, once you have achieved a suppressed viral load for at least 6 months, you can't sexually pass on HIV.

If you have more questions or concerns about the sex part, you can post them in this section: https://forums.poz.com/index.php?board=28.0 Thanks.
« Last Edit: February 20, 2024, 07:40:00 am by Jim Allen »
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Offline Grasshopper

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Re: Tested Positive on Jan 16 2024
« Reply #3 on: February 20, 2024, 07:50:10 am »
Hi, sorry to have to welcome you to the Forums.

With those lab results....YES you have full blown AIDS.

Good thing is that you started with antiretroviral therapy.

Biktarvy is an excellent option.

Take your medications diligently as prescribed by your doctor.

First thing you'll notice is a steady if not a drastically drop in the viral load. And that is the sole purpose of the hiv medications....is to halt the viral replication in your body.

Next thing you'll notice....but you will have to muster some patience...is a slow and steady recovery of your CD4 count. The primary goal is to reach at least a count of 200.
A very important thing to remember is that you started therapy with a low (Nadir) CD4 count....and this could mean a slow recovery of the CD4 count.

CD4 count is by no means an absolute measure of Health. A count above 200 means that you are relatively safe from acquiring opportunistic infections.

So hang in there, maintain your sanity and eventually things will work out fine.

(I tested positive in 1992....been to hell and back from AIDS, and I am now thriving)

Best wishes
« Last Edit: February 20, 2024, 07:55:40 am by Grasshopper »

Offline Tonny2

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Re: Tested Positive on Jan 16 2024
« Reply #4 on: February 20, 2024, 09:52:36 am »



          ojo.            Hello there!


Welcome to the forums
We are here for you. You are going to be fine as long as you take your medication as prescribed. About your sex life, I suppose you have been having sex with your wife before your TX and she is negative, I wonder if that means that she’s one of those persons who can’t Acquired HIV, I think it’s a good topic for your doctor to talk about, meanwhile, use condoms… you are not alone, we are here for you. Please keep us posted….hugeps

Offline Jim Allen

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Re: Tested Positive on Jan 16 2024
« Reply #5 on: February 20, 2024, 10:23:11 am »
I wonder if that means that she’s one of those persons who can’t Acquired HIV,

Tony! 😂 That's only a step better than "Super AIDS" topics in the just tested positive section ;D. In general HIV is just incredible difficult to pass on sexually even when all conditions are perfect and individual factors play a role such as relatively low viral load etc and safer to presume the OP partner is susceptible.
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Offline Tonny2

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Re: Tested Positive on Jan 16 2024
« Reply #6 on: February 20, 2024, 02:34:16 pm »



           ‘ojo.           What I meant is that if the. OP it’s already living with aids, and he’s asking if he can have sex with his wife, if she is HIV negative after having sex with her husband, it’s most likely, I think, as she’s not going to get the virus. But now that he knows that he has the virus, he has to use condoms during his sex activities… I remember one case on the Spanish forum when the girlfriend of a member of the forum had the same situation. She couldn’t understand why she was still shaving negative even though he was having sex with her boyfriend before he got his aids diagnosis. Then, after she found out about her boyfriend’s Diagnosis. They started having safer sex until they had a problem with the condom and she was so scared that she might have gotten the virus. She went to the clinic to see the doctor to get some pep but the doctor told her I have to giving her the medication, that he thought she was going to be OK. So she didn’t want to take the medication and she still heavy negative… i’m not sure he say explain myself. Remember that English is my second language. ..OP Please keep us posted.

Offline Jim Allen

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Re: Tested Positive on Jan 16 2024
« Reply #7 on: February 20, 2024, 02:39:44 pm »


           ‘ojo.           What I meant is that if the. OP it’s already living with aids, and he’s asking if he can have sex with his wife, if she is HIV negative after having sex with her husband, it’s most likely, I think, as she’s not going to get the virus. But now that he knows that he has the virus, he has to use condoms during his sex activities… I remember one case on the Spanish forum when the girlfriend of a member of the forum had the same situation. She couldn’t understand why she was still shaving negative even though he was having sex with her boyfriend before he got his aids diagnosis. Then, after she found out about her boyfriend’s Diagnosis. They started having safer sex until they had a problem with the condom and she was so scared that she might have gotten the virus. She went to the clinic to see the doctor to get some pep but the doctor told her I have to giving her the medication, that he thought she was going to be OK. So she didn’t want to take the medication and she still heavy negative… i’m not sure he say explain myself. Remember that English is my second language. ..OP Please keep us posted.

 :) were getting our wires crossed. Will text you later 😘
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Offline Tonny2

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Re: Tested Positive on Jan 16 2024
« Reply #8 on: February 20, 2024, 05:32:17 pm »



        ojo.         @jimallen, oops!!, somebody’s going to get some spanking…lol

Offline kentfrat1783

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Re: Tested Positive on Jan 16 2024
« Reply #9 on: February 20, 2024, 07:56:23 pm »

So I was admitted to a hospital for Acute Respatory failure and diagnosed with Pneumonia. They drew labs and discovered I was HIV 1 +. My CD4 was 27 and CD4% 2 , Viral Load was 300,000.

.....

Everyone is saying I will be fine but I know that those numbers meant I had full blown AIDS.

I am sorry to hear your Dx but the big question is, How are you doing?  I hope you’re doing well. 

Now, onto your question.  We started at about the same point.  I was initially hospitalized with pneumonia that was actually PCP, found out I was HIV+, CD4 count of 2 and a high VL.  I thought my life was over in 2017 and worried as I saw myself as having AIDS.  It did take me a while to get comfortable and realize I would be OK but sure glad I made it through and living my life again. 

I'm still here in 2024, CD4 count is over 200, and no other opportunistic infections since. 

I'm unsure where you live, but I learned that the definition of AIDS changed in 2017 that you needed to have 2 opportunistic infections in a 12 month period and a CD4 count under 200.  Well this was at least how it was described to me as my specialists kept saying I have “Advanced HIV”. 

Just remember to ask questions, take your medication, and wondering if you are on Bactrim.  I was on that for just over 3 years to help until my CD4 count got over 200. 

We also have a bi-weekly Peer Support call if you would like to join and ask questions or just learn from our experiences.  https://forums.poz.com/index.php?topic=77329.0

I’m wishing you all the best
Date - CD4 - Percent - VL
2024
06/26 - 372 - 24% - 33
02/20 - 336 - 24% - 42
2023
08/23 - 366 - 26%
06/20 - 349 - 21% - UD
04/15 - 229 - 19% - <20
2022
11/14 - 486 - 24% - 73
10/12 - 316 - 19% - <20
06/20 - 292 - 21% - <20
01/25 - 321 - 22% - <20
2021
09/22 - 278 - 19% - <20
02/02 - 225 - 19% - <20
2022
06/08 - 257 - 20% - <20
03/17 - 285 - 19% - 101 (2.00)
2019
12/17 - 290 - 20% - <20
09/17 - 218 - 16%
06/18 - 173 - 16% - <20
03/13 - 170 - 16% - <20
January 2019 - Started Triumeq
2018
12/05 - 174 - 18% - <20
08/28 - 166 - 15% - <20
05/08 - 106 - 11% - <20
03/05 - 90 - 10% - <20
2017
12/11 - 60 -   8%
09/07 - 42 -   6% - 54 (1.70)
May 2017 - Started Atripla
05/11 - 2 - 1% - 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: US

Offline Joebilly73

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Re: Tested Positive on Jan 16 2024
« Reply #10 on: February 20, 2024, 08:11:17 pm »
Honestly I have no idea how I’m doing. Just taking it day by day. Cry a lot . I thank god every day that my wife tested negative and pray that she is still that way in 3 and 6 months.
She told her parents and brother, her mother is a Nurse Practitioner and knows all about HIV but since telling her brother he has basically shut us out. I personally don’t give a fuck but feel bad for my wife. Sometimes wish I would have just died.

Offline kentfrat1783

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Re: Tested Positive on Jan 16 2024
« Reply #11 on: February 20, 2024, 08:24:34 pm »
Quote
Honestly I have no idea how I’m doing. Just taking it day by day.

This is an honest answer.  It does take time to digest everything and it isn't a bad thing to talk to somoene if you need that.  Don't think less of youself if you do.  It sure helped me a lot. 

Something that helped me for some time was to write my thoughts down.  Some times I didn't save what I wrote but just felt good to get my thoughts out. Just a thought. 

For me, I did my best to not tell many others but I know it got out to others.  I am sorry the reaction you got from your brother-in-law but we all take this differently.  I am sure she is also worried about his sister so hopefully over time things will improve.
Date - CD4 - Percent - VL
2024
06/26 - 372 - 24% - 33
02/20 - 336 - 24% - 42
2023
08/23 - 366 - 26%
06/20 - 349 - 21% - UD
04/15 - 229 - 19% - <20
2022
11/14 - 486 - 24% - 73
10/12 - 316 - 19% - <20
06/20 - 292 - 21% - <20
01/25 - 321 - 22% - <20
2021
09/22 - 278 - 19% - <20
02/02 - 225 - 19% - <20
2022
06/08 - 257 - 20% - <20
03/17 - 285 - 19% - 101 (2.00)
2019
12/17 - 290 - 20% - <20
09/17 - 218 - 16%
06/18 - 173 - 16% - <20
03/13 - 170 - 16% - <20
January 2019 - Started Triumeq
2018
12/05 - 174 - 18% - <20
08/28 - 166 - 15% - <20
05/08 - 106 - 11% - <20
03/05 - 90 - 10% - <20
2017
12/11 - 60 -   8%
09/07 - 42 -   6% - 54 (1.70)
May 2017 - Started Atripla
05/11 - 2 - 1% - 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: US

Offline Jim Allen

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Re: Tested Positive on Jan 16 2024
« Reply #12 on: February 21, 2024, 03:55:38 am »
in 3 and 6 months.

 ???

Quote
She told her parents and brother, her mother is a Nurse Practitioner and knows all about HIV but since telling her brother he has basically shut us out. I personally don’t give a fuck but feel bad for my wife.

Sorry to hear that her brother has shut you out.

The thing is you can't control how people are going to react and sometimes they just need time to digest the news as well and become more informed about HIV. Must be hard for your wife at the moment, give the brother some time.

Regarding disclosure of your HIV status, keep in mind that once you tell people they can pass on that information to others, and I certainly would urge people new to living with HIV to consider asking themselves the question, why are you disclosing? Does this person need to know and what are you hoping to get from disclosing? If there is no need to disclose and you are not going to gain from it then I wouldn't recommend it.

Quote
Honestly I have no idea how I’m doing. Just taking it day by day. Cry a lot .

Yeah, an HIV diagnosis can be a lot to get your head around. Bit like a grieving process, so my thoughts are to give yourself time to digest the diagnosis and seek out peer support, you have us here but also face-to-face peer support if that's a possibility in your area and finally consider talking to a therapist.

You are not alone. Hugs.
« Last Edit: February 21, 2024, 04:38:33 am by Jim Allen »
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Offline Loa111

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Re: Tested Positive on Jan 16 2024
« Reply #13 on: February 21, 2024, 06:04:03 am »
Sorry to hear that you found out you are positive & with an advanced diagnosis (aids).

You are going to fine! It is good news going forward for you as everyone else on here said already.

I found out I was poz that exact way you did. Violent coughing, hospital for pneumonia. then found out the bad news. CD4 22, VL 270,000. It scared me that I was so advanced & in aids stage.  That was in May 2018. I was on antibiotics for at least 2+ years until I got CD4 over 200.

Roll on to 2024, and aside from then I take my two pills every morning, I usually forget that I even have HIV! It's really just about taking the pills, go to the clinic 3 times a year & try to live healthy, fitness etc.


You will get there too. It might take a while though & you will probably go through some sort of a mourning period, which I did too, & that bit of mourning & down feeling used to hit me now & then in the first few years. It's normal.

Sorry to hear your wife told all her family. That is a headache you could do without for now. I told no one, no point. My wife knew of course, as she had to be tested & was negative thank God. She was often a real bitch about me being poz, beating me up mentally about how I got poz & using it as a psychological stick to beat me at times. I really could have done without the extra stress & lack of empathy from her but hey ho, that is life sometimes.

My advice is to tell no one else for now, and maybe for ever keep it that way.

Also the people on this forum gave me excellent support in my year years, and still do. I would have been lost without the help I got on here. So keep coming back & keep asking questions & updating us on how you are getting on. Then later be here for other new comers.

« Last Edit: February 21, 2024, 06:07:11 am by Loa111 »

Offline Tonny2

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Re: Tested Positive on Jan 16 2024
« Reply #14 on: February 21, 2024, 06:53:36 am »
???

Sorry to hear that her brother has shut you out.

The thing is you can't control how people are going to react and sometimes they just need time to digest the news as well and become more informed about HIV. Must be hard for your wife at the moment, give the brother some time.

Regarding disclosure of your HIV status, keep in mind that once you tell people they can pass on that information to others, and I certainly would urge people new to living with HIV to consider asking themselves the question, why are you disclosing? Does this person need to know and what are you hoping to get from disclosing? If there is no need to disclose and you are not going to gain from it then I wouldn't recommend it.

Yeah, an HIV diagnosis can be a lot to get your head around. Bit like a grieving process, so my thoughts are to give yourself time to digest the diagnosis and seek out peer support, you have us here but also face-to-face peer support if that's a possibility in your area and finally consider talking to a therapist.

You are not alone. Hugs.

Offline Joebilly73

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Re: Tested Positive on Jan 16 2024
« Reply #15 on: March 04, 2024, 07:39:08 pm »
Received part of my labs today

CD4 - 141 up from 27 when I was in the hospital.
CD4% - 4 up from 2%

When I was in the hospital my Hep B was negative however today it should to be positive. Can Biktarvy cause a fake positive? I don’t see my doctor till Friday and a little concerned.

Thanks in advance

« Last Edit: March 05, 2024, 03:19:36 am by Jim Allen »

Offline Jim Allen

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Re: Tested Positive on Jan 16 2024
« Reply #16 on: March 05, 2024, 03:26:18 am »
Quote
CD4 - 141 up from 27 when I was in the hospital.
CD4% - 4 up from 2%

No viral load update yet?

Quote
When I was in the hospital my Hep B was negative however today it should to be positive. Can Biktarvy cause a fake positive? I don’t see my doctor till Friday and a little concerned.

Biktarvy itself would not cause a false Heb B result.

I don't know what type of Heb B test they used in the hospital vs the clinic. Anyhow, no need to panic or overthink things, just see the doctor on Friday.



How are you otherwise feeling/doing?
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Offline Joebilly73

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Re: Tested Positive on Jan 16 2024
« Reply #17 on: March 05, 2024, 10:24:37 am »
Need assistance please
What does HIV 1 RNA, QN PCR 54H / HIV 1 RNA, QN PCR 1.73 H mean?

Offline Jim Allen

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Re: Tested Positive on Jan 16 2024
« Reply #18 on: March 05, 2024, 10:55:33 am »
It's just your viral load results. Presuming the first line you mentioned is the counts, it's a VL of 54, meaning the viral load is suppressed.

Mine would read like this:

HIV 1 RNA, QN PCR XXH Reference range: <20 copies/mL and HIV 1 RNA, QN PCR X H Reference range: < X Log copies/mL

Did the results you shared also include a reference range behind them like my example?

https://www.poz.com/basics/hiv-basics/understanding-lab-work-blood-tests
« Last Edit: March 05, 2024, 10:58:55 am by Jim Allen »
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Offline Tonny2

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Re: Tested Positive on Jan 16 2024
« Reply #19 on: March 06, 2024, 02:15:56 am »



         Ojo.           Hello there!… Your treatment is working. You about to be and detective clinically speaking. <20 and little by little  your soldiers. (Cd4) will increase. Keep doing what you have been doing since you started treatment, don’t miss any  dosage and keep a good attitude.… Please keep us posted, we are here for you.… Hugs

Offline Jim Allen

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Re: Tested Positive on Jan 16 2024
« Reply #20 on: March 14, 2024, 08:19:53 am »
@Joebilly73

How are you feeling/doing?
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Offline Joebilly73

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Re: Tested Positive on Jan 16 2024
« Reply #21 on: March 18, 2024, 04:04:13 pm »
Hey Jim,

Thanks for checking in. I am doing good.

Offline Jim Allen

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Re: Tested Positive on Jan 16 2024
« Reply #22 on: March 18, 2024, 04:34:30 pm »
👍 Glad to hear it, keep us posted.
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Offline Joebilly73

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Re: Tested Positive on Jan 16 2024
« Reply #23 on: April 06, 2024, 10:36:46 am »
Good Morning,

Just wanted to drop a line. Currently been feeling good. Emotionally I am feeling better as well. I have been on treatment since end of January. I think it is going well.

Original Numbers January 14, 2024
CD4 - 27
CD4% - 2
VL - 300,106

Labs March 1, 2024
CD4 - 141
CD4% - 4
VL - 54

I will be going tomorrow for labs and a follow up next week.

Thanks for everyone's wisdom and kind words.

With any luck CD4 will be above 200 and I can stop the Bactrim.

Offline Joebilly73

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Re: Tested Positive on Jan 16 2024
« Reply #24 on: April 09, 2024, 04:59:48 pm »
Labs March 1, 2024
CD4 - 141
CD4% - 4
VL - 54

April 8, 2024
CD4 - 89
CD4 % -4
VL- 33

I know CD 4 can vary is this something I should be concerned wit? The 50 point drop? Been taking Bactrim and Biktarvy everyday have not missed a dose. About to travel and worried I could get sick again with the low CD4 numbers

Offline Jim Allen

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Re: Tested Positive on Jan 16 2024
« Reply #25 on: April 09, 2024, 05:12:46 pm »
Travelling somewhere nice I hope.  :)

Quote
I know CD 4 can vary is this something I should be concerned wit? The 50 point drop? Been taking Bactrim and Biktarvy everyday have not missed a dose. About to travel and worried I could get sick again with the low CD4 numbers

No, as being concerned will not improve or change anything. Look don't go crazy and lick any cat's backside as you might get toxoplasmosis but live your life otherwise as normal.

CD4 counts are pretty useless, you could retest the same day and get different results, the CD% is more reliable and your CD4% is stable, increased from 2% to 4% and you are taking the Bactrim.



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Re: Tested Positive on Jan 16 2024
« Reply #26 on: April 09, 2024, 05:14:10 pm »
A far more important topic is how are you feeling and doing?
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Offline Tonny2

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Re: Tested Positive on Jan 16 2024
« Reply #27 on: April 09, 2024, 05:48:13 pm »



                  Ojo.             Hello there!… I wouldn’t worry about getting sick again because your biktarvy is suppressing the virus so Your immune system is fighting less enemy now. Yes, keep taking  your Bactrim  and your antiretroviral as prescribed and keep having a good attitude. You are on your way to full recovery, slowly, but surely … please keep us posted and hang in there, like I said, don’t worry, be happy because your virus is suppressed…abrazos

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Re: Tested Positive on Jan 16 2024
« Reply #28 on: April 09, 2024, 08:27:13 pm »
Cd4s can change by 100 pts in a single day. As evidenced by the zero change in the percentage the 141 is basically equal to the 89.
leatherman (aka Michael)

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Offline Joebilly73

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Re: Tested Positive on Jan 16 2024
« Reply #29 on: April 15, 2024, 10:43:06 am »
Got great news this weekend, my wife tested negative for her three month follow up from when I was diagnosed in January. I know based on my numbers I had been HIV positive for quite awhile and we have been intimate that whole time. So this is a great relief to our family. Would it be a good idea for her to have another text in three months?

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Re: Tested Positive on Jan 16 2024
« Reply #30 on: April 15, 2024, 11:23:43 am »
Glad to hear the result was negative.

Quote
Would it be a good idea for her to have another text in three months?

There was no need to test at 3 months, let alone another 3 months making it 6 months. Your wife doesn't have HIV unless she has been sexually active within the window period.



How are you getting on and feeling?
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Offline Tonny2

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Re: Tested Positive on Jan 16 2024
« Reply #31 on: April 15, 2024, 11:52:32 am »



              ojo.         Hello there!…Happy to read that your wife is hiv negative, keep her that wsy and practice safer sex, just in case…please keep us postef…hugs

Offline Joebilly73

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Re: Tested Positive on Jan 16 2024 Updated
« Reply #32 on: May 18, 2024, 09:43:10 am »
Update

Previous Labs
Labs March 1, 2024
CD4 - 141
CD4% - 4
VL - 54

April 8, 2024
CD4 - 89
CD4 % -4
VL- 33

May 14, 2024
CD4 - 91
CD4% - 5%
VL - <20

---- Reference Range ----
HIV 1 RNA, QN PCR
<20 DETECTED
Reference Range: NOT DETECTED copies/mL

HIV-1 RNA was detected below 20 copies/mL. Viral nucleic acid detected below this level cannot be quantified by the assay.
 
 
This test was performed using Real-Time Polymerase Chain Reaction.
 
Reportable Range: 20 copies/mL to 10,000,000 copies/mL (1.30 log copies/mL to 7.00 log copies/mL).


Does this mean I have entered the undetectable realm?

Otherwise I have been feeling much better physically then before my DX. I do have a cold ATM but it is not as bad as they have been in the past.

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Re: Tested Positive on Jan 16 2024
« Reply #33 on: May 18, 2024, 11:18:38 am »
Quote
Does this mean I have entered the undetectable realm?

The March, April and May results you posted here were all fully supressed (undetectable).

March and April the labs used by your clinic could provide a count, May results was below the threshold for an accurate count.  The treatment/clinical goal to suppress the virus has been met for months now

Another lab could count go as low as 10 or even 1 copy but as low as 1 copy is rarely used, certainly not in routine blood work.
« Last Edit: May 18, 2024, 11:21:33 am by Jim Allen »
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Re: Tested Positive on Jan 16 2024
« Reply #34 on: May 18, 2024, 11:45:02 am »
Quote
Otherwise I have been feeling much better physically then before my DX. I do have a cold ATM but it is not as bad as they have been in the past
.


Glad you are physically feeling better. How are you otherwise doing?
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Offline Tonny2

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Re: Tested Positive on Jan 16 2024
« Reply #35 on: May 18, 2024, 11:55:36 am »



                ono.             Hello there!… congratulations!  Keep doing what you have been doing. Keep taking your medication as ordered and little by little  your soldiers will increase… Keep up the good work… Hugs

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Re: Tested Positive on Jan 16 2024
« Reply #36 on: May 18, 2024, 11:57:05 am »
the clinical definition of suppressed HIV, ie "successful treatment" is a VL<200.

unfortunately, even though the word is used a lot, the word "undetectable" is not really well-defined.....quite frankly, it's not a real number, it's only a concept and I wish it wasn't used.

Some people has used it as if it meant their HIV was cured, or completely gone. The definition of UD totally misses that we have reservoirs of latent HIV, that at any minute could release some and give you a VL of 10k, while your daily meds worked to knock that HIV out. An hour later you could have a VL of 0. The definition also misses the small group of people who are never able to quite reach UD but remain under 200.

The only important number for people living with HIV is that their VL <200.
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

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Re: Tested Positive on Jan 16 2024
« Reply #37 on: May 18, 2024, 12:37:01 pm »
Quote
it's only a concept and I wish it wasn't used

100% agree with this.

The term UD/Undetectable should be scrapped or at the very least not used when sharing results, labs or discussing VL with people living with HIV. Keep it in the lab and stay there. Makes me cringe whenever someone mentions it but I just have to live with that for now.
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Re: Tested Positive on Jan 16 2024
« Reply #38 on: May 18, 2024, 02:12:40 pm »
Keep it in the lab and stay there
while it makes a cool slogan (u=u) that's easy for the neggies to understand, every time a doctor talks to a patient, they should explain the # and discuss how under 200 is successful treatment. that would relieve a lot of patient stress. (like the stress of your worries, Joe, as I'm trying to work my rant back around to the your posts here. LOL)

The amount of people who have come here fearing the smallest "blip" under 200, just shows how under-educated patient's are about this infectious disease. And it's not all our faults for not knowing; doctors could easily explain this in under a minute...and not ruin their billing. LOL
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Joebilly73

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Re: Tested Positive on Jan 16 2024
« Reply #39 on: August 05, 2024, 01:52:58 pm »
Well had my latest bloodwork done on Friday.

CD4 is down to 54 from May being 91.

Really thought things were going in the right direction. Any advice on CD4 ? I read an article that said like 15-20% never recover. 😔

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Re: Tested Positive on Jan 16 2024
« Reply #40 on: August 05, 2024, 02:46:05 pm »



                 ojo.                 Hello there!… I understand how you are feeling, but I don’t see any change in your CD4 Level. I know we always won it to be over 200 but for some people it takes a while to recover. What about you, Cd4 percentage? And your viral load?… are you feeling healthy?. As long as you feel healthy everything is OK just keep taking your medication as prescribed and your bactrim for as long as you need it.… You are going to be fine… Hugs

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Re: Tested Positive on Jan 16 2024
« Reply #41 on: August 05, 2024, 03:19:57 pm »
Well had my latest bloodwork done on Friday.

CD4 is down to 54 from May being 91.

Really thought things were going in the right direction. Any advice on CD4 ? I read an article that said like 15-20% never recover. 😔

You are within the first year, don't panic and 54 & 91 = no difference.
Tony is correct asking about the cd4% and is the viral load still suppressed (below 200)?
« Last Edit: August 05, 2024, 03:25:48 pm by Jim Allen »
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Re: Tested Positive on Jan 16 2024
« Reply #42 on: August 05, 2024, 04:00:19 pm »
Really thought things were going in the right direction.
wait! Wait!  :D I know the answer to this one!  ;) :)

while it sure would be nice for cd4s to more in a straight-line linear fashion, too often, they simply don't! Since each test result is just a snapshot of your cd4 count at that moment, add in that they can change by up to 100 pts a day, and sometimes your cd4 may be up and sometimes down.

So there are two ways to look at how your cd4s are doing:

1. chart at least three tests results over at least 6 months, and that will show you if your cd4s are moving up, or down, or staying the same-ish.

2. look at your cd4% number. That percentage is a steadier number (changes more slowly). Especially pay attention to this number while your cd4 count is <200. That'll give you a better idea of which direction things are going.
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Joebilly73

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Re: Tested Positive on Jan 16 2024
« Reply #43 on: August 05, 2024, 04:03:26 pm »
These are since March

Previous Labs
Labs March 1, 2024
CD4 - 141
CD4% - 4
VL - 54

April 8, 2024
CD4 - 89
CD4 % -4
VL- 33

May 14, 2024
CD4 - 91
CD4% - 5%
VL - <20

August 2, 2024
CD4 - 54
CD4% - 4%
VL - Not back yet

Thanks for all the replies.

Offline Joebilly73

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Re: Tested Positive on Jan 16 2024 Updated
« Reply #44 on: August 05, 2024, 11:16:43 pm »
VL 22H
And 1.34H

The Val is 2 points up from last month, is that normal? I take my Biktarvy every single day! Never missed a dose

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Re: Tested Positive on Jan 16 2024
« Reply #45 on: August 06, 2024, 03:37:37 am »
VL 22H
And 1.34H

The Val is 2 points up from last month, is that normal? I take my Biktarvy every single day! Never missed a dose

No a Vl of 22 isn't normal, it's excellent!

The viral load was quickly and remains fully suppressed thanks to the meds working, they are stopping the normal (natural) progressing of HIV and your cd4 has increased from 2% to a stable 4% over the last few results.

This is great, so keep taking your meds and give your body time to adjust and heal.
« Last Edit: August 06, 2024, 03:47:33 am by Jim Allen »
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Re: Tested Positive on Jan 16 2024
« Reply #46 on: August 06, 2024, 11:04:11 am »
No a Vl of 22 isn't normal, it's excellent!

The viral load was quickly and remains fully suppressed thanks to the meds working, they are stopping the normal (natural) progressing of HIV and your cd4 has increased from 2% to a stable 4% over the last few results.

This is great, so keep taking your meds and give your body time to adjust and heal.

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Re: Tested Positive on Jan 16 2024
« Reply #47 on: August 16, 2024, 01:15:56 pm »
Good Afternoon,

So I had my follow up to go over the LABS. I have been taking Bactrim 3x a week and my doctor wants to change to Dapsone to see if Bactrim is causing my CD4 struggles. Just curious what thoughts the community has on this? Thanks

Joe

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Re: Tested Positive on Jan 16 2024
« Reply #48 on: August 16, 2024, 02:19:50 pm »
Switching antibiotics can't hurt unless you are allergic. Never heard of Bactrim halting/stopping cd4 recovery, its standard treatment in AIDS for decades, pro and cons have long been settled, so I'm sure we would have known about it and it would be a contradictory treatment if there was any major immune suppression going on.

Your cd4s are not struggling, they are fine and stable and will increase with time. Is this a HIV specialist you are talking to? Anyhow, end of the day switching can't hurt, so go for it just don't be disappointed if your cd4 % remains the same or only a small increase as that's what to expect.

« Last Edit: August 16, 2024, 02:34:17 pm by Jim Allen »
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Re: Tested Positive on Jan 16 2024
« Reply #49 on: August 16, 2024, 03:39:35 pm »
Antibiotics have nothing to do with cd4 counts.
Your VL is <200
Your cd4s are jumping around a bit but hanging in there, in your first year.

I don't get why you're worried. Take a look at something I recently posted:
....And some people just take a longer time. While the data shows that most people take about 1-3 yrs to get their numbers into a good range, like most other diseases there are also the outliers who recover faster and other who recovery slower.

....I was consistently on modern meds for nearly 10 years before getting above 300. In the last 20 years since then, my cd4s remained around 350.....until oddly enough about 4 years ago my cd4s began creeping up and eventually reached 700. In the last 2 years though, they have dropped back to 450. It's like a crazy roller coaster ride.

So let's tackle the second issue about cd4s. The cd4 count is not a measure of how effective/strong your cd4s are. It's only a measure of how many. The general consensus is that more cd4s equals better immune response thus better health. but that isn't true either. Some people with high cd4 counts get sick also.

If you've been feeling healthy (and with what you wrote, it sure sounds like you're feeling pretty good), and UD then I say you should feel happy and just keep on enjoying life.

Worrying about your cd4 numbers is simply stupid. You can't do a damn thing to change them. Sure stopping smoking, exercising, better food, yada yada yada, can help.....as in maybe a temporary 50pt bump); but there is simply nothing that'll change them, except suppressing your HIV viral load. Changing antibiotics WON'T make a change.

Switching antibiotics can't hurt unless you are allergic.
. . .
Anyhow, end of the day switching can't hurt
although.....
a bactrim allergy is quite common, and taking bactrim itself can lead to a later bactrim allergy.

I investigate and learned this fun fact when I was prescribed bactrim for a prostate infection a few years ago and learned that taking bactrim way back in the 90s is why I busted out with an allergic reaction and can't use that antibiotic anymore.

TBH, the old adage of "if it ain't broke, don't fix it" applies to a hell of a lot of issues with treating HIV

leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

 


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