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Author Topic: Should i be worried?  (Read 1228 times)

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Offline Shazam9cd4

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Should i be worried?
« on: November 27, 2024, 05:43:28 am »
I just received my most recent lab results and after finally be UD for 6 months i have another Blip for 92.   Over past two years it was a slow decline and last year i had my first UD followed by a 48, then 2 more UD and now a 92.  I know blips happen but i read different things about the cause for concern on BLIPs.  Is there any recognized article on this subject?   A few other data points:

cD4 is highest it has been.  279,254,270,223,294
Cd4% 25.5 is highest it has been
CD4:CD8 is 1.08
CD3: 597 also highest it has been.

What causes blips?  What releases HIv from reservoir?  I tested shortly after getting off a 15 hour flight.   I had started intensive training for a sporting event in past two weeks.   I had a mild cold.   I have been most regular but amidattky i missed one day and was irregular by a few hours in a couple other days (over 4 months)

I was diagnosed in May of 2022.  cD4 of 9. Caught very late. (pCP)

Doc recommends to watch and have a follow-up next month.

I would have been euphoric over this round of tests with kidney, liver, heart, lymphocyte panel, bone density all excellent.  But this 92 VL has left a dark cloud over what would otherwise have been a good day!   Thoughts?

Offline Jim

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Re: Should i be worried?
« Reply #1 on: November 27, 2024, 06:27:21 am »
Quote
Some labs go as low as 10 copies. I presume your current lab is 20 copies, as you mention a count measured about 30+, and labs often as 10,20,40,50,200 nowadays as a limit. Question: If you change clinics in the future, will you be chasing 10 copies? Will that mean to you that you were never UD from your point of view?

What is UD for you 1 copy? Some research labs go that low.

Your viral load is fully suppressed from a treatment and clinical standpoint. The goal is not UD on a lab report, and you are and have been UD in the sense of treatment, and the clinical goal. Not once or twice but consistently; the job is done from an ART point of view. Fully suppressed, goal and target reached. ;)

Getting UD on a lab paper (Beating the lab test) isn't the goal of treatment and is pointless and utterly disruptive focus. Scrap the word UD out of your vocabulary; it's a toxic focus.

My thoughts have not changed since the last time you panicked. See above

If you are doing everything correctly and you are micro-blipping and want that to stop the only thing you can do is switch to something that "might" suppress the VL further,  however, the issue is it might not, you may have side effects you currently don't have and ultimately you don't really gain anything even if it works. What HIV treatment are you presently taking?

So I'll ask, Are you taking your meds correctly? Are you taking anything else like supplements? Have you been sick over the past few weeks?  Did you start antidepressants and therapy?



Prof. Fiona Lyons (HIV in 2024)
https://forums.poz.com/index.php?topic=77637

Low-level VL linked to defective copies released from viral reservoir
https://forums.poz.com/index.php?topic=77301

Reporting VL below 200 - “harmful medical practice”
https://forums.poz.com/index.php?topic=77575

"What’s All This Fuss I Hear About Viral “Blips”?

Blips
http://i-base.info/guides/changing/viral-load-blips

Viral Blips Don't Raise the Risk of HIV Treatment Failure
https://www.poz.com/article/viral-blips-raise-risk-hiv-treatment-failure

Spanish study gives reassurance, small HIV blips do not predict treatment failure
Teira R et al. Very low level viraemia and risk of virological failure in treated HIV-1-infected patients. HIV Medicine, online edition. DOI: 10.1111/hiv.12413, 2016.

What’s All This Fuss I Hear About Viral “Blips”?
https://academic.oup.com/cid/article/70/12/2710/5573119

Q&A on persistent low-level viremia.
https://www.healio.com/infectious-disease/hiv-aids/news/online/%7B8373ca63-674d-4015-ac35-f4da653c7415%7D/qa-understanding-persistent-low-level-viremia-in-people-with-hiv


« Last Edit: November 27, 2024, 08:59:41 am by Jim Allen »
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Offline leatherman

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Re: Should i be worried?
« Reply #2 on: November 27, 2024, 12:20:51 pm »
Are you taking your meds correctly? Are you taking anything else like supplements? Have you been sick over the past few weeks?  Did you start antidepressants and therapy?
while these are excellent questions to evaluate determining a medical issue, I think I'd like to point out the obvious.

You started treatment just shy of 3 yrs ago. When you started you had PCP and 9 cd4s. I really hate to point it out but that was AIDS. AIDS isn't just being HIV+ but it also means that you had been infected for a number of years, in which HIV was slowly but surely doing damage to your body.

While this is just my anecdotal evidence, I started treatment when I had PCP and 5 cd4s. A situation similar to yours. Since I just passed my 40th anniversary of getting infected with HIV,  I actually know that I had been infected for 10 years when I was hospitalized for PCP. My cd4s didn't stabilize over 300 for 12 years and my VL blipped around for 5 years before settling into undetectable.

More than likely, you too were infected for a number of years before hitting the same low point that I did. Hearing that it's taking you a few years for your VL and CD4s to settle down, isn't anything new.

That's how it happens for a fair number of people. Luckily after the years of medication improvement, most people get onto meds, regain good numbers quickly and never have issues. BUT not everyone. Don't feel bad, get down, or have a bad day simply because your experience isn't the most perfect experience.

And don't feel down when you're actually having a good experience. Yes, a good experience. The actual definition of "successful treatment of HIV" is a VL less than 200. However since, as I mentioned above, a lot of people have great experiences on medications, the word "undetectable" was developed. This number as a point in treatment used to be 150, then it was 100, then 50, and now 20. All this number really has been is whatever is the lowest number that tests have been able to detect.

Today's "undetectable" which is usually 20 (viral loads can be tracked lower but the expense and time isn't worth it) means you could have a count of 0 or/up to 19. Of course HIV is never eradicated but goes dormant and hides out in lymph nodes before being active and starting replication again; so have some sort of VL count should never be a surprise.

As these tests are only a snapshot at the time your blood was collected, another test 3 hours later could have very well returned an "undetectable". In your case, your dormant "undetectable" virus could have started replicating again. The meds could have disrupted further replication and the newly active HIV could have started dying off and be returning back to undetectable levels......but you had to have your blood tested at that very moment and BAM! You've got a VL of 92.

There are plenty of people living with HIV who never reach undetectable. After years of treatment, some people still have a low VL count. As mentioned earlier, not everyone gets to have the perfect experience. Seeing how your blips have been less than 200, you really shouldn't be worried about treatment problems.

CD4 counts can be similarly hard to get a handle on. Just like your VL has been bouncing around (after it clearly dropped drastically after the PCP/AIDS) going down, your cd4 count is bouncing around going up. But our bodies aren't static. Your BP, temperature and other counts all change all day long and two consecutive tests rarely produce the same numbers.

Hopefully you feel better now about your minor number fluctuations. ;)
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 Jim

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Re: Should i be worried?
« Reply #3 on: November 27, 2024, 02:36:04 pm »
Quote
I really hate to point it out but that was AIDS.

A touch of AIDS
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Read about PEP and PrEP here
PEP and PrEP

Offline Shazam9cd4

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Re: Should i be worried?
« Reply #4 on: November 27, 2024, 02:46:25 pm »
Leatherman -  i do feel better after reading these responses.  Thank you!  That was much what i was thinking at the time of reviewing the results.    ‘Its a temporary blip not to be concerned about’ But i was still unsettled and  the more i read the more unsettled i became.  ‘Is my HIV becoming resistant?  Am i on the edge of treatment failure?’

 It is now the middle if the night.  I couldn't sleep well  being unsettled by this storm in a teacup.  I just have to accept i am a ‘blipper” for the time being….and may in fact always be!  But that doesnt translate into ‘failed treatment’

Thanks for the piece of mind.  Ill be aboe to sleep now!




Offline Shazam9cd4

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Re: Should i be worried?
« Reply #5 on: November 27, 2024, 02:59:52 pm »

Hi Jim -  pursuant to my last response above id like to respond to you questions:  “Are you taking your meds correctly? Are you taking anything else like supplements? Have you been sick over the past few weeks?  Did you start antidepressants and therapy?”

 1) Are you taking your meds correctly?” 
This quarter i was a bit irregular.  I had irregular hours due to my job and was late by a few  ;)hours a couple days.  Additionally i  missed one day.

2)  Are you taking anything else like supplements?”. 
Yes.  I am taking supplements.  New to my normal regimen of supplements was NAD.   

3) Have you been sick over the past few weeks?”. 
Just a mild cough/throat itch.  Now gone.

4)   Did you start antidepressants and therapy?”.  I just came off 6months of antidepressants (10mg of brintellix/day)  tapered down and now off past two weeks without issue.  Feeling fine. Life is good until my blip result.  Now im good again!    ;)

Offline leatherman

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Re: Should i be worried?
« Reply #6 on: November 27, 2024, 05:54:40 pm »
Am i on the edge of treatment failure?
treatment failure means the meds are not blocking HIV, allowing HIV to replicate unchecked. This means the viral load would continue to go up (not up and down).....sometimes by 1000s.

1) Are you taking your meds correctly?” 
This quarter i was a bit irregular.  I had irregular hours due to my job and was late by a few  ;)hours a couple days.  Additionally i  missed one day.
not that I am suggesting anyone should miss any doses.....however, research has shown that 95% adherence results in successful treatment. Missing a dose in a month isn't going to cause issues. Of course, if you can miss an entire day's worth of treatment without harm, being several hours late (or early) isn't a dealbreaker either. ;) But always try to stick to a regular time as much as possible
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 Jim

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Re: Should i be worried?
« Reply #7 on: November 28, 2024, 03:50:47 am »
4)   Did you start antidepressants and therapy?”.  I just came off 6months of antidepressants (10mg of brintellix/day)  tapered down and now off past two weeks without issue.  Feeling fine. Life is good until my blip result.  Now im good again!    ;)

Excellent.
Really glad to hear that you are feeling fine now and that this worked for you.

Quote
2)  Are you taking anything else like supplements?”. 
Yes.  I am taking supplements.  New to my normal regimen of supplements was NAD.   

Microblipping, as explained is not a concern, but if you can't move on with your life, than anecdotally speaking, I have had plenty of people complain about persistent microblips, and stopping the supplements often fixed it. It's just a thought and of course keep working with your doctor

« Last Edit: November 28, 2024, 04:08:57 am by Jim Allen »
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You can read about HIV prevention here:
HIV prevention
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PEP and PrEP

Offline Loa111

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Re: Should i be worried?
« Reply #8 on: November 28, 2024, 06:45:12 am »
A touch of AIDS

Ah sure didn't I have a touch of AIDS myself back in 2018.  8) Indeed all is grand these days.   :)

Sorry @Shazam9cd4 for hijacking your thread, but when I saw Jims "Touch of AIDS" comment, I couldn't stop laughing!  :D

I suppose it would be fair to say that if any of us have Blips that only will be noticed if the Blip coincides with our blood tests clinic appointment time. So therefore many of us could have Blips between visits and not even know it?


Online Brian1966

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Re: Should i be worried?
« Reply #9 on: November 28, 2024, 12:15:07 pm »
Touch of AIDS  ;D. Jim always makes me laugh.

I also had a touch… well it was more like a kick in the ass but the wonderful doctors and nurses got me on the right treatment and got me feeling much better. Blips happen to me all the time but I have also been UD on two different tests but my original VL was >2 million and CD4 was in the teens when I was diagnosed so I’m expecting a few years of the numbers bouncing around a bit. Those first blips were concerning to my doctor who did a resistance test to be sure and it was just a couple of consecutive blips.

I have been able to have more informed conversations with healthcare providers after reading the resources and information on these forums.

Offline Jim

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Re: Should i be worried?
« Reply #10 on: November 28, 2024, 04:18:49 pm »
Touch of AIDS  ;D. Jim always makes me laugh.

I also had a touch… well it was more like a kick in the ass

lol

Ah sure didn't I have a touch of AIDS myself back in 2018.  8) Indeed all is grand these days.   :)

I can hear the Irish accent while reading this.  ;D


Quote
I suppose it would be fair to say that if any of us have Blips that only will be noticed if the Blip coincides with our blood tests clinic appointment time. So therefore many of us could have Blips between visits and not even know it?


Excellent. Yeah so, if they tested me every day for six months, I could nearly guarantee that more than a few times my viral load would be between 50-200.
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 Shazam9cd4

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Re: Should i be worried?
« Reply #11 on: December 03, 2024, 06:23:53 am »
When i went for my follow-up consultation to review the results (i can see results online before we meet) they raised adherence, the BLIP but also the fact all other results were the best they have been and i shouldnt panic - in the event i am.  They werent too concenred but need to watch.   This particular doc had never heard of POZ so i showed her what was written here.   She was impressed.   Also in agreement.   

Later on She did ask me to consider moving from Triumeq to Biktarvy as a future option.  Both for heart health and resistence thresholds.  After some discussion we both agreed given  1) i was  negative for HLA-B*5701. and 2) i have no other detected adverse effects, then best  to stay on triumeq rather than removing one important drug from the HIV arsenal.  Should any problems arise in the future (resistance or other side effects)  we Can consider at that time.

Offline leatherman

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Re: Should i be worried?
« Reply #12 on: December 03, 2024, 11:01:37 am »
they raised adherence....They werent too concenred but need to watch.
Keep in mind that your doctors are always going to ask some questions that don't apply to you; nor are they accusatory questions even if they "sound" that way. They're just information seeking questions.

Consider what your doctor has to think about when they look at a patient's chart and see any abnormal reading. Right now we'll consider the blip. Your doctor saw a patient with a "not UD" reading. First cause to look at is adherence. So you got asked about adherence. After that, other causes your doctor could consider would be digestive absorption, blood work to determine a different under-lying medical issue that could be interfering, length of time on current treatment, is the cd4 count decreasing, etc. Doctors can even go so far as to consider the quality of the lab doing the test or the quality of the actual medications and/or pharmacy.

For any abnormal lab result, there's always a list of things a doctor will consider. Unfortunately, even with today's easier medication regimens, guess what the #1 cause of blips (ie >200 and most likely in the 1000s) is? Patient error..... poor adherence. So that's always going to be the first question from a doctor.

Just so you know, I've been taking meds for 30 yrs and I promise you if my next test result has a small blip, my doctor is going to ask me about my adherence. LOL Believe it or not at each quarterly doctor visit I have, as my doctor enters the room, sits down, and pulls up my chart, the second thing out of his mouth (the first thing is "hello" because my doctor is a sweet guy) is "have you been adherent?" LOL

This particular doc had never heard of POZ so i showed her what was written here.   She was impressed.   Also in agreement.
A lot of doctors know POZ because of the magazines in their offices but don't know about the forums. I've tried to tell as many doctors and support staff as I can about this valuable resource for PLHIV. During my years doing peer support, I've sent quite a few PLHIV here for more support and information. It's hard for doctors to know about this support when they themselves don't need it, and knowing what websites offer valid science-based advice is always a struggle needing research that they just don't have time for.

Later on She did ask me to consider moving from Triumeq to Biktarvy as a future option....Should any problems arise in the future (resistance or other side effects)  we Can consider at that time.
that's right! If it ain't broke, don't fix it. ;)

Touch of AIDS  ;D. Jim always makes me laugh.
every time I read that I laugh too. I laugh though because I only wish that it had "touched" me. AIDS slapped the hell outta me! 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 Jim

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Re: Should i be worried?
« Reply #13 on: December 04, 2024, 02:35:19 am »
Touch of AIDS  ;D. Jim always makes me laugh.

I also had a touch… well it was more like a kick in the ass

I laugh though because I only wish that it had "touched" me. AIDS slapped the hell outta me! LOL

Kick in the ass AIDS
Slapped the hell outta me AIDS

 ;D

When i went for my follow-up consultation to review the results (i can see results online before we meet) they raised adherence, the BLIP but also the fact all other results were the best they have been and i shouldnt panic - in the event i am.  They werent too concenred but need to watch.   This particular doc had never heard of POZ so i showed her what was written here.   She was impressed.   Also in agreement.   

Later on She did ask me to consider moving from Triumeq to Biktarvy as a future option.  Both for heart health and resistence thresholds.  After some discussion we both agreed given  1) i was  negative for HLA-B*5701. and 2) i have no other detected adverse effects, then best  to stay on triumeq rather than removing one important drug from the HIV arsenal.  Should any problems arise in the future (resistance or other side effects)  we Can consider at that time.

Glad to hear that they were reassuring regarding the micro blip and confirmed there was no need to panic. If in the future, you ever start to stress about a blip again, remember to read back this thread  ;)
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 Bucklandbury

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Re: Should i be worried?
« Reply #14 on: December 06, 2024, 09:40:42 am »

 


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