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Author Topic: Confused about first labs.  (Read 1340 times)

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Offline punkinpuff

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Confused about first labs.
« on: October 31, 2018, 12:43:03 pm »
Hi! I hope I'm in the right place here. I got my first positive test at home on Oct 11 and it was confirmed by the health department on the 16th. I got enrolled in the Ryan White program and they ran my labs, but I haven't been able to see a doctor yet. So, I was hoping y'all could help me understand the numbers, because I'm a little confused here.

My viral load is 2702 and 3.43 log. My CD4 is 484 and 25%. I'm confused because I've read that VL is usually very high during the acute infection. Could this mean that my body is controlling it better? Could I possibly stay off meds for a while? Could it be a false positive?

I'm really lost here and have no one to talk with about this. Any insight will be greatly appreciated!

Offline JimDublin

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Re: Confused about first labs.
« Reply #1 on: October 31, 2018, 02:04:18 pm »
Hiya

Sorry to hear about the diagnosis.

Treatment is recommended regardless of how high or low your vl is for better health outcomes.

When to start treatment is part of the welcome thread and here you will also find other easy to digest information about starting out on this journey. https://forums.poz.com/index.php?topic=2276.0

Take it easy, a diagnosis can be a lot to digest at first but things do get better.

Jim
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Offline JimDublin

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Re: Confused about first labs.
« Reply #2 on: November 01, 2018, 09:56:38 am »
You know when you do see your doctor they will also walk you through your results, and you are not alone and can post here whenever you need.

Jim
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Offline Gladragsguy

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Re: Confused about first labs.
« Reply #3 on: November 01, 2018, 10:59:59 am »
Well it is not a false positive, that is confirmed now. You could possibly be an 'Elite Controller' but this is very rare.
 After diagnosis I think we all went through the stage of 'I will beat this' and I'm gonna be the lucky one', this is one of the 7 stages of grief/trauma sometimes called 'Denial/Bargaining'.  It is very normal and we all have been there. As for your numbers you can look at charts to see roughly where you are. (Sorry I don't know how to post them here, message me if you want them) Using the last test results you had before your positive diagnosis will narrow it down more. Start treatment immediately it is standard protocol now and gets you back to 100 pecent faster.  Lastly I know you can't believe it now but it really truly does get better. Find a support group right away and you will see first hand.

Offline leatherman

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Re: Confused about first labs.
« Reply #4 on: November 01, 2018, 11:52:24 am »
i was typing all this up when I saw Glad posted, so now my post is just "further information" to what Glad wrote ;) :)

Could it be a false positive?
Could this mean that my body is controlling it better?
Could I possibly stay off meds for a while?
VL is usually very high during the acute infection
1. the health dpt confirmed the home test - so that's a positive

2. no one "controls" HIV. A very few people seem to be able to go some years before needing meds; however, during that time HIV and inflammation are still doing some damage.

3. After 40+ years of research, the simple answer is that every one who tests HIV+ needs to be on meds and need to be on meds as soon as possible. Starting early has long term good side effects by lessening the level of virus thereby lessening much of the long-term damage HIV could do. Also starting early gets you to "undetectable" so that you can't transmit HIV any further. Meds kept you well and prevent further infections - it's a win-win!

4. the graph before is a representation of an average HIV infection.


In regards to your question, notice the first bit of time when the viral load rise and then falls. After the initial infection, the viral load rises disseminating HIV throughout your body. Afterwards the viral load falls. How high can it rise? it depends on your immune system. How far can it drop? It depends on your immune system. How long can it last? A few weeks to a few months. This graph is just a guide; but here's what we know: you had an initial infection that raised the level of HIV for some time then that viral load dropped and leveled off.

Now, without meds, there will be some time (maybe a decade, maybe not) while the HIV viral load slowly rises, until the VL overwhelms your immune system resulting in death by opportunistic infection. However, with meds, the HIV is suppressed (meaning knocked down to the lowest level possible) allowing your immune system to work the way it's supposed too; and keeping you from transmitting HIV to anyone else.

your VL of 2702 is pretty small but definitely not "suppressed" (that would be a VL of <=200; but <=20 is the goal) and your CD4  484 (25%) is in the "normal" range, although on the low end of "normal". Don't get hung up on your cd4 count! If it's above 200, the only thing that matters is taking your meds every day to keep your viral load suppressed. ;)
leatherman (aka mIkIE)

There's no rain, there's no storm, though the blue sky makes you wonder
Don't you fear what will come will come
And right now we're in the sun
Sure enough, seasons change
But don't let today get lost 'cause today the sun's on us
Today the sun's on us
- Sophie Ellis-Bextor

chart from 1992-2017
Isentress/Prezcobix

Offline punkinpuff

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Re: Confused about first labs.
« Reply #5 on: November 01, 2018, 12:30:55 pm »
Thanks for all the replies and answers! I think Mr Glad hit it on the head with the bargaining.  :-[

My appointment is still two weeks away and my brain is exploding with questions. I haven't been able to sleep and I cry at the drop of a hat. And I still have a family to take care of...

On a separate but "search for a silver lining" note, all of my lupus symptoms have disappeared. It's been over eight years since I didn't have joint pain without swallowing handfuls of ibuprofen. It's a tiny thing, but it makes me happy.

Offline geobee

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Re: Confused about first labs.
« Reply #6 on: November 09, 2018, 01:52:09 pm »
For me, the only VL that I focus on is "undetectable".  Once you get on meds, your VL should go down and then, over time, should reach UD with adherence.  My doc did a resistance profile which took a couple of weeks.  Then I started meds and, thankfully, the VL went down to UD levels.

As an aside, my last BF was undetectable for 25 years or so W/O meds.  That's a very, very rare person. 

Breathe, punkinpuff.  Even though it's a pill a day, not what it used to be, doesn't kill you anymore if you take meds, etc.  -- it's still a big deal.  By taking it one step at a time, soon you'll have walked a mile.  You are tougher than this virus.

Offline punkinpuff

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Re: Confused about first labs.
« Reply #7 on: November 09, 2018, 03:08:24 pm »
Breathe, punkinpuff.  Even though it's a pill a day, not what it used to be, doesn't kill you anymore if you take meds, etc.  -- it's still a big deal.  By taking it one step at a time, soon you'll have walked a mile.  You are tougher than this virus.

My appointment is on Monday and honestly, I feel like I'm preparing for a battle. I'm on Ryan White so I don't get to choose my doctor, it's just whoever is next in line for a new patient.  :-\ I have researched his online reviews and they're not so great. I already get the "lab coat syndrome" and clam up and cry at normal appointments, so I'm severely anxious about trying to get my concerns addressed properly. I guess I have you guys, yeah?   :)

Offline Gladragsguy

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Re: Confused about first labs.
« Reply #8 on: November 22, 2018, 12:19:04 am »
Any updates Punkinpuff?

Offline punkinpuff

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Re: Confused about first labs.
« Reply #9 on: November 24, 2018, 01:27:30 pm »
Any updates Punkinpuff?

Thanks for asking, glad!

I had my first appointment and the Dr was nice and very respectful, but there was a language barrier and I ended up not getting any of my questions answered. BUT thankfully, my husband had an appointment the following week and his Dr is amazing! He checked my husband over then sat and answered ALL of my questions thoroughly, and pulled my case worker in and had my Dr changed to one in the practice that has a rheumatology background.

There's a lot of concern about my starting ART without some safety net in case the lupus flares up badly. He brought up IRIS as a main concern. So, for right now, I'm not going to start treatment. Early January I'll meet with the new Dr, and hopefully be able to get back on plaquenil, and then start ART!

I've been given 2 choices: tivicay and descovy or biktarvy. I'm leaning more towards the first one because it's been around longer and has a lot more data behind it and that makes me a lot more comfortable. So, that's where I'm at right now.

I hope everyone who celebrates, had a great Thanksgiving! And thanks for being here and being a main source of support for so many people!

Offline punkinpuff

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Re: Confused about first labs.
« Reply #10 on: November 24, 2018, 01:41:57 pm »
Also wanted to add, my husband's Dr theorized the cause for the low viral load is a combination of me being a woman and also being HLA-B5701 positive. So, I'm allergic to abacavir, but apparently an ancestor of mine survived the plague. Lol!

Offline JimDublin

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Re: Confused about first labs.
« Reply #11 on: November 26, 2018, 02:17:16 pm »
IRIS, well there is not something you hear everyday anymore.

My two cents are at the moment you have quite a normal level of CD4's etc and (IRIS) Immune reconstitution inflammatory syndrome is normally only seen with very suppressed immune systems when you start treatment and the immune system restores.

Anyhow one thing is for sure, without treatment HIV will continue to do measured and unmeasured damage and the IRIS risk is not going to get any better or less in contrast its going to be even a bigger risk.

Hope you feel better soon and can get a treatment plan sorted soon. Jan 2019 you said, ok well keep us posted.

Jim
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Offline punkinpuff

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Re: Confused about first labs.
« Reply #12 on: November 26, 2018, 03:41:00 pm »
It was explained to me that any stimulation of the immune system is a risk for the lupus to flare up, even outside of the scope of IRIS. (But he said IRIS can occur at any CD4 count and autoimmune disorders qualify under the diagnostic criteria.) And seeing as lupus can and will attack major organ systems, it's safer to have a doctor with rheumatology experience give his opinion before going forward.

HIV and SLE coinfection is apparently quite rare, and requires special considerations to manage them together. The damage being done by the HIV over the next six weeks, pales in comparison to the damage that could be done if the lupus flares out of control and damages my brain or heart.

I feel comfortable waiting for an expert opinion, and my husband's doctor also said his professional opinion was to wait. I'm not just denying treatment for shits and giggles here. ;)

Also, I'm feeling quite well these last couple weeks and I have faith that my doctors will put me on the best treatment plan for me. And I'll be sure to update when I can! :)

Offline JimDublin

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Re: Confused about first labs.
« Reply #13 on: November 26, 2018, 03:59:37 pm »
I think you may misunderstand the point of my post. 

Lupus aside, IRIS is from existing co-infections (OI's) hiding behind the weaken immune system, and when the immune system does react to them once reestablished post ART, however I think the odds of this being the case with an otherwise healthy CD4 count and low VL load is tiny, so what I am so I am saying is not to worry too much and wishing you all the best in Jan 2019.  ;)

Just don't delay too long if it can be avoided as we have seen that go badly (Not saying that to stress you)

Keep us posted. 

Quote
I'm not just denying treatment for shits and giggles here. ;)

It would surprise you the numbers who do...
« Last Edit: November 26, 2018, 04:15:35 pm by JimDublin »
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Offline Loa111

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Re: Confused about first labs.
« Reply #14 on: November 26, 2018, 04:41:39 pm »
I've been given 2 choices: tivicay and descovy

This is what I am on "tivicay and descovy", 1 pill of each daily. Working good for me, and I like it better than the Genvoya I was originally on, as Genvoya has to be taken with food, whilst "tivicay and descovy" does not matter if food or not. I'm UD so working fine.

Obviously the Biktarvy is newer & supposed to be very good too (from what I've read on here).

Good luck with whichever one you decide to go with. Get it started & get UD asap.

Offline punkinpuff

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Re: Confused about first labs.
« Reply #15 on: November 26, 2018, 07:58:48 pm »
It would surprise you the numbers who do...

Ok, that kind of breaks my heart, honestly. After researching heartily after my inital post, even if I were to be an elite controller, I would still start treatment. The research is quite clear that being on treatment is better in long run, even for elite controllers (which I don't think I am anyway).

Get it started & get UD asap.

That's the goal! :) Glad to hear you've done so well on that regimen, I hope I have those kind of results, too!

 


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