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Author Topic: Newly positive  (Read 2149 times)

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Offline Renick65

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  • Posts: 6
Newly positive
« on: December 06, 2013, 08:14:19 PM »
Hi folks -

Well I've been going back and forth about whether to post here, but after just getting diagnosed, this site has really helped me a lot and I have a cautionary tale to relate too.

I was exposed in Oct., went through the acute phase like gangbusters 2.5 weeks later (during an important professional conference out of state - argh!), and have been going through the roller coaster of disappointment, depression, self-flagellation and hopelessness with a few better days here and there. I had a slight positive oraquick 5 weeks after exposure, and a qualitative RNA positive just after. My western blot from last week now shows about half the bands strongly positive. One of my issues is I'm still having a lot of acute problems a month and a half after the initial sickness. Is this normal? I've read that the worse the acute phase hammers you, the poorer the long-term outcome, which I hope isn't true in my case. I'm 48, so maybe age has something to do with the bad acute phase, I don't know.

I'm also kicking myself endlessly because for the first time in years, I accidentally let my health insurance lapse, just in time to become positive (Murphy's law on steroids!), and now I have to go through the free services until I get insurance again. The free services in my state are pretty good, but I feel like I need to get on meds yesterday. Because of all the paperwork, it looks like it could be another couple of months before I actually have any meds in hand, which is frustrating the hell out of me because I know if I get meds now I might prevent some of the reservoir buildup and damage to my immune system.

The cautionary part of my story is one for people that think the over-the-counter oraquick test can be used as a screening tool for unsafe sex. I met a guy that had tested negative very recently, and tested negative again with the oraquick a couple of weeks after we were together. Turns out he was in the window period and got the initial acute reaction about a week before I did (which is what prompted him to re-test). He's now confirmed positive. He's getting help and talking to doctors, so that's good. I'm sure his viral load was insanely high when we were together. That said, I knew the risks but thought it was a very minimal risk considering all the negative tests. Bottom line for anyone still negative - safe sex _always_ with people that assume they're negative, even with a recent negative oraquick test. The window period problem can be like dominoes falling and everyone needs to be educated better about it.

I appreciate all the good advice and resources here, and I hope I'll have something to contribute once my head is on better. I get my first labs back on Tuesday, so wish me luck.

Offline Jeff G

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  • How am I doing Beren ?
Re: Newly positive
« Reply #1 on: December 06, 2013, 08:20:49 PM »
Welcome to the Forum and I'm wishing you luck ! . Thanks for sharing your story and hope to hear more from you soon .

Offline Renick65

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  • Posts: 6
Re: Newly positive
« Reply #2 on: December 07, 2013, 03:41:49 PM »
Thanks, Jeff. How long has it taken you all before you stopped beating yourself up over this? Is there ever a "normal" again?

Offline life2

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Re: Newly positive
« Reply #3 on: December 08, 2013, 01:12:13 AM »
Hi Renick,

The answer to your question likely varies widely amongst us. 

In my experience I focused on the routines of work, dr appointments, house cleaning, yard work, scheduling pharmacy visits, etc, etc...

I just reached the 1 year anniversary of my diagnosis on Thanksgiving and honestly it's hard to remember when I stopped beating myself up.  Life is relatively normal now but I still have a tough day from time to time.

The best advice I can give you is to focus on taking care of yourself right now.  Understand that the things you are feeling are normal but that they are just feelings, often irrational, and will pass.  Learn everything you can about HIV; there's a lot to learn and it will take some time.  Become an equal partner with your Dr in managing your health.  Avoid any major life decisions for a while (a year seems to be the common advice and was appropriate for me). 

Check in to these forums frequently.  The community here is great and have been enormously helpful to those who have to find this place.  We're sorry you had to find us but we're glad you did.

Be well.


Offline Jeff G

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  • How am I doing Beren ?
Re: Newly positive
« Reply #4 on: December 08, 2013, 07:42:45 AM »
Thanks, Jeff. How long has it taken you all before you stopped beating yourself up over this? Is there ever a "normal" again?

I have been poz over 30 years and I had actually had my worst time dealing with my diagnosis along the way and not when I was newly diagnosed . You will deal with your diagnosis in your own way at your own speed .

I learned that stuffing your problems or anxiety's away may work well for a time  but the ones time doesn't heal will stay patiently waiting and pop up for you when you least expect it .

Its speaks well for your prognosis that you are here and talking about it .

Offline Renick65

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Re: Newly positive
« Reply #5 on: December 18, 2013, 03:01:45 AM »
Well I finally got my first numbers - CD4 557, VL 596,000. It's only been 8-9 weeks since I was infected, so the numbers aren't so bad. I always assumed the docs would want to put me on meds immediately given the recent infection. I certainly want to start ASAP. Because my CD4 isn't below 500, they basically refused to prescribe meds right away, and told me to come back in two months to see how I deal with the viral load on my own. WTF? Am I right to be pissed at this? Do I need to find another clinic? I'm not sure I can sit around for two months doing nothing while my immune system gets more compromised!

Offline Jeff G

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Re: Newly positive
« Reply #6 on: December 18, 2013, 06:57:30 AM »
Well I finally got my first numbers - CD4 557, VL 596,000. It's only been 8-9 weeks since I was infected, so the numbers aren't so bad. I always assumed the docs would want to put me on meds immediately given the recent infection. I certainly want to start ASAP. Because my CD4 isn't below 500, they basically refused to prescribe meds right away, and told me to come back in two months to see how I deal with the viral load on my own. WTF? Am I right to be pissed at this? Do I need to find another clinic? I'm not sure I can sit around for two months doing nothing while my immune system gets more compromised!

Your doctor is doing the right thing in my opinion and I would not be so quick to jump on the med wagon . You could be one of the cases where you control the virus without meds or a slow progressor that may not need meds for a long time . If I were in your situation I would wait and see, two months isn't going to make that much difference in the long run .

There is a debate about putting people on meds at diagnoses or waiting but that does not apply so much in your situation with your current good CD4 count . In your case waiting for two months and starting meds is practically starting meds at diagnoses anyway if it turns out you need them . 

Offline Miss Philicia

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Re: Newly positive
« Reply #7 on: December 18, 2013, 08:51:56 AM »
Thanks, Jeff. How long has it taken you all before you stopped beating yourself up over this? Is there ever a "normal" again?

Oh, I stopped kicking myself after a few days thinking it wasn't going to help me or change my situation. Some people kick themselves for years though and end up bitter and unhappy -- so take your pick which course you think is the more beneficial.
"I’ve slept with enough men to know that I’m not gay"

Offline mecch

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Re: Newly positive
« Reply #8 on: December 18, 2013, 08:54:23 AM »
Your doc is following standard protocol. 

That said, there is also value in feeling in control of your health and treatment decisions.  I hear that you are not content so its not wrong to want another opinion from another doc/clinic.

Your situation isn't the easiest to understand because of the lack of insurance, and also what will be happening next year - will you be in a new Affordable Plan insurance program, trying to get ADAP, what, how, where, etc.

Funding for good supply of meds isn't ALWAYS immediately resolved.  If you go shopping now for a doc/clinic that will prescribe HAART now, is the funding set up so you can start now, and stay on it reliably?

Have you spoken to any kind of Health social worker / case manager who will advise you how this all takes place in your location, and especially this transitioning year?
« Last Edit: December 18, 2013, 08:56:26 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Renick65

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Re: Newly positive
« Reply #9 on: December 18, 2013, 12:19:17 PM »
Thanks for the replies... I was feeling a little helpless yesterday, maybe I should just chill a little. I guess I'm confused about what the protocol actually is right now. I've read the latest official NIH recommendations from February that set the treatment milestone of less than 500 CD4, but there is another section of these guidelines that suggest treatment shortly after exposure should be considered a bit more strongly. I've read in a lot of places on this forum that the USA guidelines are to treat no matter what the CD4 level. Where is that coming from?

My situation with insurance/adherance, etc, has been mostly resolved, thank goodness. I don't need to sign up for the ADAP assistance. I've added and will be covered again by my school's insurance starting Jan 6. With offered help from a family member, I can swing the initial prescription if I got it today. I already take 8 pills or so in supplements every morning, adding one or two more isn't a big deal. I told the Doc all this (Well, they're a NP, not a Doc), but it didn't change their mind at all.

Offline Miss Philicia

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Re: Newly positive
« Reply #10 on: December 18, 2013, 12:25:03 PM »
As far as I know only some local places have recommended treating upon diagnosis, and this has more to do with geographic clustering of new infections: NYC and probably San Francisco. The NIH are the official guidelines for the entire country. Look at them as the minimum threshold. NYC and SF are willing to commit resources to their recommendations. A poor county in South Dakota does not have that luxury -- it's a large country and median incomes per county and state vary quite widely.

For example, even though our new infection rate is greater than NYC's, I do not believe Philadelphia's Dept. of Health's AIDS Activities Coordinating Office has issued "treat upon diagnosis" as an official recommendation. I'd have to ask my doctor as he also the medical director of the city's largest HIV public clinic.

If you wish to look at it on a personal level, if you want to go on meds after your doctor's recommended wait time after your next labs then just insist to your doctor that's what you want to do. I seriously doubt he will deny writing the prescriptions for you. It's your body and that's the bottom line.
« Last Edit: December 18, 2013, 12:29:44 PM by Miss Philicia »
"I’ve slept with enough men to know that I’m not gay"

Offline Renick65

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  • Posts: 6
Re: Newly positive
« Reply #11 on: December 18, 2013, 01:35:25 PM »
Thanks Miss Philicia, it does seem to vary a lot by location and infection rate. Unfortunately, I live in a location (Baton Rouge) that was number one in the country for new infections per capita last year. There is still so much stigma down here that folks just don't get tested like they should. But like Philly, the state apparently hasn't adopted any new protocols despite us being a hotbed.

I understand the NIH recommendations better now after reading more carefully. They do recommend treatment for new infections despite CD4 level, but it's the strength of the recommendation and evidence for it that's key. Treating recent infections above 500 CD4 is a BII recommendation, meaning it's a moderate recommendation based on evidence from non-randomized trials. Bottom line is docs should be offering treatment to newly infected folks if they want it and can afford/comply.

Offline drewm

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Re: Newly positive
« Reply #12 on: December 18, 2013, 01:39:15 PM »
Listen to your doc but communicate your concerns. Keep us posted.  ;)
MAY 2010
VL>500,000 CD4>8

JUNE 2010 STARTED ATRIPLA

DEC 2010
VL>30 CD4>323

Atripla. Valtrex, Trilipix, Fluoxotine

Offline oksikoko

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  • Writing the congressman again
    • the treatment cascade
Re: Newly positive
« Reply #13 on: December 18, 2013, 04:20:08 PM »
I dunno. I'd be pissed. Time is of the essence, but I suppose time and antiretrovirals are also money. The side effect profiles can be so light, it seems wrong to dismiss early meds on the off, slim chance that the OP is a nonprogressor or other such rare genetic creature.

I had to wait an extra week to start Stribild because of a scheduling SNAFU, and even that was too much lost time. HIV got a whole extra week to stomp its galoshes around in my systems. And me unarmed. Harumph.

Renick65, the guidelines you're thinking of come from the National Institutes of Health (NIH). They were updated in February 2012 to say:

Quote
Antiretroviral therapy (ART) is recommended for all HIV-infected individuals to reduce the risk of disease progression.

Emphasis mine.

Of particular relevance to you:

Quote
The recommendation for initiation of ART in patients with early infection was changed from “should be considered optional (CIII)” to “should be offered (BII).”

Quotes taken from Guidelines for the Use of Antiretroviral Agents in HIV-1-Infected Adults and Adolescents
http://aidsinfo.nih.gov/guidelines/html/1/adult-and-adolescent-arv-guidelines/0
Code: [Select]
2013-10-03:                ☣ VL (=) undetectable ☣ CD4 (+) 1105
2013-05-23:                ☣ VL (=) undetectable ☣ CD4 (-) 945
2013-02-25:                ☣ VL (-) undetectable ☣ CD4 (+) 1123
2012-12-16: Enter Stribild
2012-11-20: HIV+           ☣ VL (→) 132,683      ☣ CD4 (→) 920
2012-04-01: HIV-
Dates in this signature file conform to ISO 8601. ;-)

Offline mecch

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  • Posts: 11,263
  • red pill? or blue pill?
Re: Newly positive
« Reply #14 on: December 18, 2013, 04:58:54 PM »
Jan 6?! Congrats!
Thats a very short time from now. Call around already and make an appointment with an ID specialist. Get a copy of your labs you have already. and bring them to your first appointment with the specialist and speak your mind.
“From each, according to his ability; to each, according to his need” 1875 K Marx

 


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