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Author Topic: New Here  (Read 1296 times)

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Offline David1184

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New Here
« on: December 10, 2018, 03:31:32 pm »
I've been reading these threads for a little bit and find them very helpful. I hesitated on registering/posting about my diagnosis because the story is rather lengthy, but decided WTH, some people like to read lol...

So I am 34 years old, married since 2014 to the guy I've been with since 2002. We adopted our little girl in 2016 as a newborn. I was informed about my positive RNA results on 11/13/2018.

In the two weeks prior I was very ill, enough to the point that I had to miss work for these two weeks. It started with a fever of about 101, enough to make me achy and give me the chills... I figured I was just getting a flu (which I never get) except as the days went on I did not develop any other flu symptoms - just a fever that would not go away. About 4 days into the fever my gums became extremely inflamed and painful - I'm talking PAINFUL - like I could not eat anything and even drinking water hurt! I went to my dentist who prescribed me a medicated mouth wash. a couple days later I developed a really bad soar throat so I decided to finally see my PCP to see what's up. She swabbed my gums and throat and concluded I had strep throat and suspected my gums were inflamed due to the ongoing fever - so she prescribed me antibiotics and ordered lab work...

During the following week - while waiting for my lab results - my throat and gums finally started feeling better but my eye became extremely irritated with an HSV flare-up - I've had HSV-1 in my eyes since I was 18. I would usually only get flare-ups about once every couple of years, so I figured this was going to be just a normal flare-up, possibly triggered by a week of sickness.. I went to my eye Dr. for confirmation and began taking my normal medicine for it (Acyclovir) along with an anti-viral ointment (Zirgan, a new med just released).

Any ways, back to my lab results. The Dr. called me to come in on 11/13, I honestly had ZERO expectation of what was to happen, I thought the conclusion would be normal results - go about your merry way. She came in with a somewhat concerned look on her face. She asked how I was feeling and then began going over my lab results, everything she mentioned was normal. She left HIV for the very end, I could tell she was having a hard time telling me. As she mentioned my HIV status she said I conclusively tested positive for HIV in the RNA test but I did not have any anti-bodies in my system... She said she would send in a referral for me to see an Infectious Disease specialist. At this point my mind became numb and emotionless... We finished our convo and I walked out of the office stunned and even a little embarrassed thinking every worker there knew as they watched me walk out... I sat in my truck for about 10 minutes in the parking lot just completely blank-minded until finally, I broke down, collected myself, and continued to the grocery store (my next errand for that day).

The weeks following, my anxiety was through the roof. I had several breakdowns, mood swings, and felt very alone as I wanted to keep this to myself until I saw the specialist, I guess I was still holding out for a false-positive... The specialist I was sent to could not see me in December as he was out all month. I could not wait until January so I had my PCP fight my HMO for another referral. Finally I got approved to see another specialist - my appointment is this afternoon (12/10/2018).

It's been a month since diagnosis, I feel fine except I am still having issues with my eye. My eye Dr. said that my immune system should have fought off the HSV by now but maybe it is being prolonged due to stress so I am still on all the eye meds... I held back from informing him of my HIV test results, but I will likely tell him on my follow-up later this week... Other mild health issues I've had were my hands and feet would become extremely itchy, almost painfully itchy, but this only lasted for a couple of days. In my mind I imagined it was from my body creating anti-bodies, but who knows...

I have no idea how I contracted it... We have what I like to call a semi-open relationship. We are completely in love with each other and have no plans to love anyone else. None of the romance has dwindled except some of the bedroom stuff (natural after 17 years?)... so we have become "okay" with each other hooking up on occasion as long as we are safe and don't sacrifice any of "our" time to do so.. I honestly don't take advantage of this much - I'm just not the horny teen I used to be... But the last time I had unprotected sex was well over ten years ago... There was a bb encounter about a month before my diagnosis which would line up with my results, but he swore he was on Prep - he even showed me his pills - of course I now have no way of contacting this person... Is it possible that I've been carrying this for over a decade without knowing? I've read that it's possible but that theory doesn't really line up with me not having anti-bodies at my diagnosis, or does it? Doesn't having no anti-bodies mean it is a fairly new infection?

No, I have not told him yet. I know I know please don't jump on me for this. I will tell him soon, obviously I will have to. He is just under a lot of stress already and I know this news will probably push him over the edge (whatever that may be).. The main reasons I haven't told him are: 1) He is under a LOT of stress with his job. 2) He is under additional stress with his mom, constantly afraid of losing her to health issues... 3) I am certain he is negative as he just had lab work done. 4) Our sex life rarely involves risky moves - and because of our busy schedules (including our toddler's) I know I can hold off on any risky activity happening for a little bit without any suspicion... Plus, I know he is going to have lots of questions - many that I cannot yet answer until I see the specialist - which will only fuel the initial anger/stress I know he will feel upon the news... I honestly think I am more worried about his health just from hearing the news... Plus we are preparing to buy a home...

Any ways, sorry for the long story, I think I just needed to type this all out. I have been reading on HIV rather heavily and I have now accepted my situation - I am very much back to my positive self (aside from my damn eye). My next worry (besides breaking the news to my husband) will be starting ART and dealing with whatever side-effects I might have - right as I will be traveling to my in-laws for the holidays this month...

Thanks for reading.

Offline JimDublin

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Re: New Here
« Reply #1 on: December 10, 2018, 03:59:11 pm »
Hiya

 :) Well congratulations on the adoption.

Sorry to hear about the eye, one of the guys at work has a daughter who has this as well and its not easy or nice at all.  Flare-ups are not fun.

About the RNA result. If I understand correctly you are still due a follow-up today and the RNA result is the only result so far. How many copies was it ?

Anyhow I wish you good luck with the follow-up today. For the time being, I am however going to ask you to stay in this one thread (post only here) and keep us posted on any results, I am not trying to get any hopes up but false RNA test results do happen, we have seen them and so I want to keep you in one thread.

Quote
here was a bb encounter about a month before my diagnosis which would line up with my results, but he swore he was on Prep - he even showed me his pills - of course I now have no way of contacting this person...

Well that would certainly be a risk and the most likely exposure from what I read of your post, expect for the below.

Quote
No, I have not told him yet. I know I know please don't jump on me for this. I will tell him soon, obviously I will have to. He is just under a lot of stress already and I know this news will probably push him over the edge (whatever that may be).. The main reasons I haven't told him are: 1) He is under a LOT of stress with his job. 2) He is under additional stress with his mom, constantly afraid of losing her to health issues... 3) I am certain he is negative as he just had lab work done. 4) Our sex life rarely involves risky moves - and because of our busy schedules (including our toddler's) I know I can hold off on any risky activity happening for a little bit without any suspicion... Plus, I know he is going to have lots of questions - many that I cannot yet answer until I see the specialist - which will only fuel the initial anger/stress I know he will feel upon the news... I honestly think I am more worried about his health just from hearing the news... Plus we are preparing to buy a home...

Yeah he needs to retest, I mean he could be in the window himself and be the source even, not that it matters, but he really does need to know.

Quote
My next worry (besides breaking the news to my husband) will be starting ART and dealing with whatever side-effects I might have - right as I will be traveling to my in-laws for the holidays this month...

In-laws ... :(

I always found dealing with them was more difficult than AIDS.  ;D

Look you should not be expecting any side-effects and end of the day with treatment living with HIV is just that "living" so try to relax a bit, I know its a mind bending time at the moment but it will settle.

Take care, keep us posted.

Jim
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Offline David1184

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Re: New Here
« Reply #2 on: December 10, 2018, 04:22:37 pm »

 :) Well congratulations on the adoption.

Thank you!


About the RNA result. If I understand correctly you are still due a follow-up today and the RNA result is the only result so far. How many copies was it ?

Yes follow up in about an hour, my guess is he will want to order more lab work before prescribing?

I'm not sure how many copies... All my results say are
-"HIV AG/AB, 4TH GEN: REPEATEDLY REACTIVE"
-"HIV 1 RNA, QL TMA: DETECTED"
-"HIV 1 ANTIBODY: NEGATIVE"


Anyhow I wish you good luck with the follow-up today. For the time being, I am however going to ask you to stay in this one thread (post only here) and keep us posted on any results, I am not trying to get any hopes up but false RNA test results do happen, we have seen them and so I want to keep you in one thread.


I will keep updates here only.


Yeah he needs to retest, I mean he could be in the window himself and be the source even, not that it matters, but he really does need to know.

In-laws ... :(

I always found dealing with them was more difficult than AIDS.  ;D


I will definitely have him retest, but I am still very certain he is negative. And telling him is definitely not an option, it will happen...

Luckily his family is great, I always look forward to visiting with them, probably more than he does lol..

Offline JimDublin

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Re: New Here
« Reply #3 on: December 10, 2018, 04:34:12 pm »
Quote
-"HIV AG/AB, 4TH GEN: REPEATEDLY REACTIVE"
-"HIV 1 RNA, QL TMA: DETECTED"
-"HIV 1 ANTIBODY: NEGATIVE"

So reactive 4th gen HIV 1/2 antibodies + RNA detected. That makes more sense and would be overall a positive result.

Quote
Luckily his family is great, I always look forward to visiting with them, probably more than he does lol..

Oh well if that's good than HIV is going to be easy. Look take it easy with the follow-up appointment.

Yeah they will run more tests or as some of us call it visiting the "vampires" 
They will be running base line tests and also tests to understand any resistance patterns/Hyper sensitivity etc etc that will help understand the best treatment options. No need to stress about this though, they know what they are doing.

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 Expat1

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Re: New Here
« Reply #4 on: December 10, 2018, 09:24:07 pm »
Yours symptoms sound very similar to mine when I seroconverted.  Flulike.   With a headache that wouldnt go away.   

The good news, I started meds long before my condition worsened. Consequently my CD4 has always been over 1000, and since the 3rd week after seroconverting I have had undetectable viral load.  (4 years, 10 months). 

You will do fine.  Do tell the significant other. He needs to test and then go from there.  I felt much better emotionally after I started the meds and got the first undetectable viral load.

Now it is just 2 pills at lunchtime.  No big deal.  And some blood work every 4 to 6 months. (Which I and to do before anyway due to another condition.)

Offline David1184

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Re: New Here
« Reply #5 on: December 11, 2018, 02:24:37 pm »
Expat1: Thank you for your response and glad to hear about your CD4, hopefully I will have similar results..


JimDublin: So Dr. visit went well. He of course called in more lab work, which I just completed this morning. Holy cow that was the most blood they've ever taken from me, hopefully it won't be that much every time???

He was disappointed that my original lab results did not take a count of the virus copies. He suspects (based on everything I've mentioned above) that this is a recent infection and that I am nearing the end of the Initial Infection period.

He wants to start me on Biktarvy ASAP to get an early treatment start, however this may change pending my lab results. But first he wants my eye to get better as he said that the Biktarvy could make my eye symptoms worse in this stage. So he took me off the Acyclovir and put me on an aggressive amount of Valacyclovir. He told me to hold off on the Biktarvy for 3 days, which should be enough time for the Valacyclovir to make my eye symptoms better - have to say my eye is already feeling better after two pills so far - plan to start the Biktarvy on Friday...

Offline JimDublin

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Re: New Here
« Reply #6 on: December 11, 2018, 02:33:11 pm »
Quote
Holy cow that was the most blood they've ever taken from me, hopefully it won't be that much every time???

 ;D we don't call them vampires for nothing ... That said there are a few initial tests that they will not run again and you will get more use to it over time.

Glad the appointment went well.

Quote
have to say my eye is already feeling better after two pills so far - plan to start the Biktarvy on Friday...

Good to hear the eye is doing better, and Biktarvy, cool the VIP drugs.  ;)
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

 


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