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Author Topic: Virologic Failure?  (Read 1778 times)

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Offline ZachR

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Virologic Failure?
« on: June 06, 2019, 02:41:57 pm »
Hi everyone,
I am very much concerned about my viral load. I am still in the anxious and nervous post-diagnosis period and I need some brighter views from those who are more experienced.
As you can see below all my labs, my virus kind of stays persistently slightly above the desired number. Having in mind that I have had one of the most potent regimens (Triumeq) and then switched due to side effects to Biktarvy, which is another very potent combination my virus seems to be still wandering around. I am deeply concerned and afraid, is this a potential virological failure or do blips happen in the first year of treatment. Another factor is that I've been having VL measures almost every month which males the chance of observing blips much greater yet..
Additionally, I started questioning things like the rosemary tea I love, garlic in my salads and curcumin that I take whether they could be interacting. Or, as I am a vegan, whether a plant diet could be interacting.. Yeah, apparently, I have become pretty much a hypochondriac, but I am just scared. What do you think?
« Last Edit: June 06, 2019, 02:44:56 pm by ZachR »
25.10.19 VL 43
26.05.19  CD4+ 685 %26 VL 55
27.03.19  CD4+ 850 %31 VL 24
***Switched to Biktarvy due to side effects.
25.02.19  CD4+ 740 %30 VL 78
15.01.19  CD4+ 1600(might be wrong) %0.7 VL 54
05.11.18  CD4+ 720 VL 1,100
17.09.18  CD4+ 962 %25 VL 14,000,000 - Started first regimen on Triumeq
15.07.18 - diagnosed, CD4+ 490 %20
20.04.18 - infected

https://ibb.co/X74GV0X

Offline Jim Allen

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Re: Virologic Failure?
« Reply #1 on: June 06, 2019, 03:37:37 pm »
Hiya

Welcome to the forum, sorry to hear about the diagnosis.

Virologic Failure, far from it, you about a few hundred copies away from that. Most of your VL counts would be considered UD. You are also in the first year of treatment, just changed the regime and, a bit of dancing around with finer details of the numbers post swicth & witin the first year is not uncommon.

Keep working with your doctor but try to relax, give yourself & the treatment time to work and settle in.

Best, Jim

Persistent Blips:

3 page decent (I think) Q&A on this topic that might help.

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

Low level blips & treatment

Viral Blips Donít Raise the Risk of HIV Treatment Failure
https://www.poz.com/article/viral-blips-raise-risk-hiv-treatment-failure

HIV blips do not predict treatment failure
http://www.aidsmap.com/Spanish-study-gives-reassurance-small-HIV-blips-do-not-predict-treatment-failure/page/3085173/

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



HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
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 ZachR

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  • Posts: 58
  • Let's look at the stars again
Re: Virologic Failure?
« Reply #2 on: June 06, 2019, 04:19:17 pm »
Thank you so much,

Your answer came as a warm, reassuring hug to my all day long racing mind and anxiety. Thank you again! (:
25.10.19 VL 43
26.05.19  CD4+ 685 %26 VL 55
27.03.19  CD4+ 850 %31 VL 24
***Switched to Biktarvy due to side effects.
25.02.19  CD4+ 740 %30 VL 78
15.01.19  CD4+ 1600(might be wrong) %0.7 VL 54
05.11.18  CD4+ 720 VL 1,100
17.09.18  CD4+ 962 %25 VL 14,000,000 - Started first regimen on Triumeq
15.07.18 - diagnosed, CD4+ 490 %20
20.04.18 - infected

https://ibb.co/X74GV0X

Offline harleymc

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Re: Virologic Failure?
« Reply #3 on: June 07, 2019, 12:05:25 am »
A lot of what gets detected is viral load tests are ineffective faulty DNA fragments that have no biological activity or ability to infect other cells.

These get slowly released from 'reserves' in the body and will be more likely if you've had an initially high viral load, like yours was. With time they tend to settle down.

In terms of the U=U sexual safety message less than 200 copies is considered undetectable and some experts are suggesting that less than 1000 copies is unlikely to be a transmission risk.

Offline Jim Allen

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Re: Virologic Failure?
« Reply #4 on: June 07, 2019, 03:29:58 am »
You're welcome.

Re-reading your post it sounds a bit like you are having a rough time digesting & settling into your HIV diagnosis. Your physical health & treatment is only one aspect of caring for yourself.

What is your current support network like? Do you have anyone to talk to face to face about how you are doing & feeling? Have you spoken to a therapists or considered joining any face-to-face peer support groups to help you during this journey? 

Take it easy.
HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
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 ZachR

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  • Posts: 58
  • Let's look at the stars again
Re: Virologic Failure?
« Reply #5 on: June 07, 2019, 06:24:03 am »
You're right, it's quite a long story with many complications but I will try to outline it perhaps might help someone else in the future to know that even difficult times do pass.
Well,in April 2018 I was about to graduate from University, Biolomedical Science and start specialising in Neuroscience. Near my 22nd birthday I got very sick and as a person with some knowledge of the matter, I felt that it was not the ordinary flu. Yet once it passed I didn't give it much thought as I was in a perfect loving new relationship and had a very busy schedule of exercising and doing research. I moved on, but my lymph nodes would stay palpable and as I would never suspect HIV for having been extra cautious and always in monogamous long-term relationships, I got worried about lymphoma, which has always been very dreadful to me due to family history. Running a million tests, doctors trying to stop me by telling me I'm fine, spending thousands on specialists, I dropped my research and exercise when I was just thriving. I got deeply depressed and anxious and started losing my hair. In July 2018 one of the thousand tests, the one I least expected came back positive - HIV, and tbh, I was happy to finally have the diagnosis. Then the usual newHIVer things until beginning treatment. The day I began treatment I was cobfident that it's all over and wd got it very very early and now I can go back about my business. I was wrong.
As it was sort of meant to go wrong, all wrong. I developed very severe neurological symptoms. For 6 months I wasn't able to breathe or expand my chest cavity, as a young person with usually low blood pressure, I got 160/90 now. Digestion was non-existent. I suspected IRIS or the medication, well literally tryibg to survive with inability to take a single breath, brain fog and zaps and high bp, I was trying to do my best as no doctor paid any sort of attention, and when they did they would quickly dismiss it as anxiety. Well, tho I knew it was not, I listened to them and got anxiety and depression meds, tho the psychiatrist said it was not the case. True, the meds made it way worse... I stopped them immediately, I read all the scientific literature available. I stopped even complaining to my doctors, because they didn't care. I changed the meds to Biktarvy and things got 35% better. Then I would go back thru every single detail and trace what happened that brought me to this condition. In my opinion it was the tons of broad spectrum antibiotics they gave me in June 2018 to rule out bacterial infections, they gave me generic antivirals too and antifungals. That translates into a cimpletely destroyed gut microbiome, and add the massive mental stress and depression to it. Now I got the answer, I got special clinical grade probiotics, went completely while-food vegan, started exercising again and now things are improving and I am almost the way I was. Soon they told me I might have latent TB infection that gave me some distress too. However, the physical agony, the wasted 1 year, the dropped university, research position, work and physique, social contacts.. Now, it's been such a mass destruction that I don't even think about it, because feeling after all that is a powerful source of gratitude and hope. I never ever knew I had the strength, belief and power to go something so destructive like this. As the morale of the story, never ever give up. You might be crawling and crying, but keep moving, doing and being.
And to briefly answer your question, I have no one right now, no friends, no cumminity to belong to. The only person I have is my mother who has been struggling with me, all other members of my family are very supportive and enlightened but I live far from all. I was too busy trying to return my health, and everything else was put aside. Unfortunatelly, for me, it was all left to my own responsibility. But as a result all my blood biochemistry is now perfect w/o exception. Now I do start missing everything about life and want to start regaining. But loneliness is definitely a dream-breaker, especially, when you have been so long isolated in pain. But as I get healthier and fitter, I will be making bigger steps to making new friends and contacts. It's been easy for me as I am very social, but I'd prefer being with someone which will help me quickly pull myself out of this unsettling state of mind.
« Last Edit: June 07, 2019, 06:35:41 am by ZachR »
25.10.19 VL 43
26.05.19  CD4+ 685 %26 VL 55
27.03.19  CD4+ 850 %31 VL 24
***Switched to Biktarvy due to side effects.
25.02.19  CD4+ 740 %30 VL 78
15.01.19  CD4+ 1600(might be wrong) %0.7 VL 54
05.11.18  CD4+ 720 VL 1,100
17.09.18  CD4+ 962 %25 VL 14,000,000 - Started first regimen on Triumeq
15.07.18 - diagnosed, CD4+ 490 %20
20.04.18 - infected

https://ibb.co/X74GV0X

Offline Mindless

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Re: Virologic Failure?
« Reply #6 on: June 07, 2019, 09:53:46 am »
Hi Zach,

I was caught by your interesting story and in the end I have a couple of dumb questions: you say you donít know how you got infected but from the notes in your sign space I see you put a precise date for your infection... if I can ask, how do you know that?
Also, I see thereís a couple of months time between your diagnose and starting the therapy, is there a particular reason for thatís?

Thanks

Offline ZachR

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  • Posts: 58
  • Let's look at the stars again
Re: Virologic Failure?
« Reply #7 on: June 08, 2019, 05:17:28 am »
Probably I haven't expressed mysslf well enough, but I actually didn't want to tap into that aspect as it is heartbreaking for me. I mentioned that I was in a fresh loving relationship in April 2018, and 20.04 was our first being together. That's the time around which I developed my primary HIV infection symptoms. Before that time for months I was single and didn't have sex at all. Then, when I got my diagbosis a few months later I was able to precisesy trace back all events and at that time he was coughing and sick, but as love blinds pdople I was then not suspecting anything at all. After my diagnosis and surely tracing back everything to him, I rushed to warn might, presuming that he doesn't know and should help him get tested and treated too.. Well, this is when my heart got broken, as I learned that he had known about his status but been denying and that's why he told me he was clean and we can practise unsafe sex. Of course, I didn't blame him, it was my decision to say yes after all, he didn't force me.. but I have been simply too naive.
Then, there's such a gap between diagnosis and treatment because of the hospital and doctors which was truly very depressing and distressing for me. They told me to wait a month for all my results... which is not realistic and then a month to wait for the doctor as he was absent.... This is a thing I can't even logically explain, but back then I didn't know much, I was worried but stayed rather quiet and waited not to get someone angry with me..
« Last Edit: June 08, 2019, 05:20:32 am by ZachR »
25.10.19 VL 43
26.05.19  CD4+ 685 %26 VL 55
27.03.19  CD4+ 850 %31 VL 24
***Switched to Biktarvy due to side effects.
25.02.19  CD4+ 740 %30 VL 78
15.01.19  CD4+ 1600(might be wrong) %0.7 VL 54
05.11.18  CD4+ 720 VL 1,100
17.09.18  CD4+ 962 %25 VL 14,000,000 - Started first regimen on Triumeq
15.07.18 - diagnosed, CD4+ 490 %20
20.04.18 - infected

https://ibb.co/X74GV0X

Offline Mindless

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Re: Virologic Failure?
« Reply #8 on: June 08, 2019, 12:00:28 pm »
Really sorry about the story of your infection. Really sad... btw, Iím not really sure how I got infected but looking at the facts it may happened in a very similar way, by someone who didnít really care about their fellow humans or who didnít even know about their status (hopefully thatís what happened). But I agree with you that in the end I had the choice to take or not the risk and so Iím the real responsible for my infection.

They told me to wait a month for all my results... which is not realistic and then a month to wait for the doctor as he was absent....
Wow, that sounds almost ďcriminalĒ by the hospital/doctor letting wait someone 2 months since the dx... unbelievable.

Anyways, I see your story ends with a new beginning for you... Nice to see you traveled that far and found a new ďlandď where start with new perspectives.

Hugs

« Last Edit: June 08, 2019, 12:03:03 pm by Mindless »

Offline Marcanthony

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Re: Virologic Failure?
« Reply #9 on: June 09, 2019, 03:28:56 am »
Hello. I understand where you are coming from.

Iíve been on 3 different combos in 1 year as nothing was controlling the virus and getting me to U. Iím currently on Truvada and Tivicay taking the latter twice a day.
Last results VL was 54, so close. My VL was very high when diagnosed and cd4 of 4/ I was very very sick.

Iím having bloods done again in July, but it does take time. Just give it chance. Iím hoping that I am U now and keep it that way. Itís been tricky, Iíve been scared but weíre all different and respond in different ways

Offline Jim Allen

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Re: Virologic Failure?
« Reply #10 on: June 09, 2019, 05:23:15 am »
Hiya

Sounds like a very mixed & rough journey so far, the focus is of course on the future and, like you indicated how you got here is less important. For me, it was Mrs.Claus younger sister. https://forums.poz.com/index.php?topic=71109.msg

Quote
I have no one right now, no friends, no cumminity to belong to. The only person I have is my mother who has been struggling with me, all other members of my family are very supportive and enlightened but I live far from all. I was too busy trying to return my health, and everything else was put aside. Unfortunatelly, for me, it was all left to my own responsibility.

Quote
as I get healthier and fitter, I will be making bigger steps to making new friends and contacts. It's been easy for me as I am very social, but I'd prefer being with someone which will help me quickly pull myself out of this unsettling state of mind.

Sounds like a plan to start making friends & meeting people. Isolation or, self-isolation is not healthy.

I've always found HIV+ peer support & social groups to be very helpful. Might be worth checking out in your local area if there are any to join.

Give yourself time, take it easy.

Jim
HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
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 TGun

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Re: Virologic Failure?
« Reply #11 on: June 11, 2019, 11:12:39 am »
I was diagnosed sept 2017, spent the better part of 18 months feeling depressed and then one day jsut kind of snapped out of it..  hang in there man, theres better days ahead of you i promise you.  others told me the same and i had a hard time believing them cause i was so depressed but rest assured that it will get better for you. most days it doens't even cross my mind nowadays.  cheers

Offline MarkintheDark

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Re: Virologic Failure?
« Reply #12 on: June 11, 2019, 04:13:34 pm »
Hello Zach --  Thx for going into such detail about the bumpy road you've traveled.  Inadvertently, your story has probably already helped someone else traveling a similar path.

I don't have much to add to the feedback you've received.  Generally speaking, newly poz folks are laser focused on numbers in the first year or so.  Considering, too, your own medical experiences, it's particularly understandable.  fwiw, your CD4 is in the normal range by most metrics and, to reiterate, you're essentially UD.  For comparison, I've been in the mid-100-200 range and UD for years.  You're also someone who does take charge of his medical care. 

One point you made about your partner kinda jumped off the page at me.  You mentioned he said he was "clean."  That's a negative, demeaning term with which us poz folk have had to deal, that is, the contention anyone with HIV is "dirty."  All it does is exacerbate our own stigma and shame.  That said, I concur with @JimAllen's suggestion on finding some peer support.  Hang in, buddy.
HIV dx - 02/93
AIDS dx - 07/01
Rilpivirine/Cabotegravir guinea pig since 01/17

Offline ZachR

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  • Posts: 58
  • Let's look at the stars again
Re: Virologic Failure?
« Reply #13 on: June 11, 2019, 05:30:25 pm »
Thank you guys from the depth of my being. I know I should get there and even be better than ever, as I'm now learning love. For for the self, for life, for everyone around me. Never knew I had to go thru all the thorns thirsty for just a tad of the scent of life, yet, life, that beautiful scent is worth so much, especially when there are so many people wanting you to succeed, wanting you to be great again. You can't imagine how just a couple of your words could be life changing in bad days, I didn't know either. It's now that I'm realising all these very subtlw beautiful details of life and just realising I should be telling myself and the ones I love, and actually everyone, short loving phrases whenever possible. We all need love, because we all have pain. I just realise how many of my friends have been going thru pain, as I tell them my story, now they open up and sharw with me and finally, it turns out, we're never alone, it only takes some courage to speak out. I'm kinda wordy, sorry, just I've been quiet for so long, that finally voicing out my thoughts seems to help me find my soul and feel whole again. Thank you guys, once again.
P.S. I'm sorry for the inappropriate word 'clean', just in the depth of writing all my story and putting it in a chronological order, I have unintentionally missed some important details.
25.10.19 VL 43
26.05.19  CD4+ 685 %26 VL 55
27.03.19  CD4+ 850 %31 VL 24
***Switched to Biktarvy due to side effects.
25.02.19  CD4+ 740 %30 VL 78
15.01.19  CD4+ 1600(might be wrong) %0.7 VL 54
05.11.18  CD4+ 720 VL 1,100
17.09.18  CD4+ 962 %25 VL 14,000,000 - Started first regimen on Triumeq
15.07.18 - diagnosed, CD4+ 490 %20
20.04.18 - infected

https://ibb.co/X74GV0X

Offline MarkintheDark

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  • Posts: 142
Re: Virologic Failure?
« Reply #14 on: June 12, 2019, 02:15:17 am »
P.S. I'm sorry for the inappropriate word 'clean', just in the depth of writing all my story and putting it in a chronological order, I have unintentionally missed some important details.

Definitely no need to apologize for anything, Zach.  The words weren't uttered by you, but they most definitely were part of your story. imo, a very important part of the story that I think perfectly illustrates the stigma many of us have faced.  And the effect of that word is often not even recognized.  But it's there.  It's important that people hear that.
« Last Edit: June 12, 2019, 02:17:47 am by MarkintheDark »
HIV dx - 02/93
AIDS dx - 07/01
Rilpivirine/Cabotegravir guinea pig since 01/17

 


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