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Author Topic: Newly diagnosed after PEP  (Read 3823 times)

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Offline prismatic

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Newly diagnosed after PEP
« on: August 19, 2014, 09:23:18 AM »
Hey all!


I hope everyone is enjoying the rest of their summer! I created a post in the "Am I infected?" thread back in May. I had an encounter with someone who potentially had HIV, and I decided to go on PEP 3 days after exposure. My first two tests came back negative. My ID decided to do a viral load testing for my second test (which was done 1 week after my treatment) and that was negative. I was due for my final blood test this week...however things have definitely changed.

I've been seeing someone on a steady basis for the past month. We started barebacking after 2 weeks of meeting up, and decided to be exclusive. One night, we mess around, and I decide to top him (No ejaculation--come to think of it, we have never came into each other at all). Two days later, I get a burning sensation on my penis, and decide to go to a clinic to get blood work to find out what I have. Yesterday, they called me in and told me I tested positive for Gonorrhea and showed up reactive to HIV-1. This was an antigen test, by the way. I called my ID doctor right away, and she was distraught herself; She's going to take my final blood work this week. So I'm very confused, but no longer scared. While on PEP, I've had to grasp so much knowledge on this virus, and I'm ready to kick this bug's butt!

I live in NYC, and am fortunate enough to have support groups and this forum. I have HIV positive friends who I called and discussed my diagnosis with. They are both on different types of treatment, so who knows if I'l be able to relate to them in terms of pills and stuff. The only thing that I'm worried about is telling the guy I'm seeing that I came up as reactive...and that he also gave me gono. Coincidentally, we're going to Fire Island this weekend, and all we want to do is relax. So that's what we'll do. I'll try to keep sex out of the picture, but I'll bring condoms just in case. I just have to find the right words to tell him.

What I've learned from this forum and my HIV+ friends is that this disease can be totally manageable. I told my best friend aka roommate last night as well, and he's ready to help me along the way. I'm 5'4", 110lbs, and I fear that my body will wither away, but maybe I'm just paranoid. Either way, this is a wake up call for me to be more conscious of my health. I'm nervous about this new journey, but this forum is the perfect shoulder to lean on. <3

Offline mecch

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Re: Newly diagnosed after PEP
« Reply #1 on: August 19, 2014, 09:32:20 AM »
If you are HIV+, sorry about that for sure.  :-[

I am a bit confused by your thread title and the story above.

Are you saying your PEP experience, or the act that led to your PEP, is the transmission?   Or is it the barebacking with your new friend, and after you were off PEP.

Lots of people read these forums, and you're going to raise anxieties especially that PEP doesn't work or testing is off or whatnot.

Could you be clear why these 2 different times and sex acts are being tied together, please?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Online Jeff G

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Re: Newly diagnosed after PEP
« Reply #2 on: August 19, 2014, 09:37:42 AM »
You may well have got a false positive and need to have your test confirmed to rule that out .
Please only post in this one thread until you have been confirmed HIV positive .

Offline prismatic

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Re: Newly diagnosed after PEP
« Reply #3 on: August 19, 2014, 09:43:55 AM »
Hi mecch  :),

I just realized that I should have elaborated on that a bit more, I am terribly sorry!

Pretty much, I took PEP on May 17th due to an encounter with someone completely different at that time. From then on, I've been taking many tests with my ID doctor. The last one I took was on the last week of June, shortly after I finished PEP, and it came back negative. She even decided to do the viral load testing.

However, I started seeing a guy for the past month (July-August) and recently I decided to get tested because I had a burning sensation on my dick. My results came back as positive for gono, and reactive (positive) for HIV-1. When I called my ID doctor to tell her the news, she was confused because PEP works VERY well, and all my results came back negative a few weeks ago. It sucks because I was fine not long ago after taking PEP, but something happened. Perhaps I was exposed recently, and potentially by my current partner; But that's a whole other story. Pretty much, I have shown up as reactive, and I'm slowly trying to take it all in.

Offline prismatic

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Re: Newly diagnosed after PEP
« Reply #4 on: August 19, 2014, 09:45:10 AM »
You may well have got a false positive and need to have your test confirmed to rule that out .
Please only post in this one thread until you have been confirmed HIV positive .


Hey Jeff,

Wow, I actually didn't even consider that. Is it possible to get that result with an antigen test? Also, I'm so sorry for the post. If you'd like to move it into another thread, please feel free  :)!

Online Jeff G

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Re: Newly diagnosed after PEP
« Reply #5 on: August 19, 2014, 09:50:14 AM »

Hey Jeff,

Wow, I actually didn't even consider that. Is it possible to get that result with an antigen test? Also, I'm so sorry for the post. If you'd like to move it into another thread, please feel free  :)!

Its possible ... so call your doctor and have them do additional testing . Your thread is OK here just do not post anywhere else until you have been confirmed as positive .

Offline mecch

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Re: Newly diagnosed after PEP
« Reply #6 on: August 19, 2014, 10:03:11 AM »
It sucks because I was fine not long ago after taking PEP, but something happened. Perhaps I was exposed recently, and potentially by my current partner; But that's a whole other story. Pretty much, I have shown up as reactive, and I'm slowly trying to take it all in.

I hope you had a false positive...

I underlined above because something is not sinking in.   If the PEP worked you got HIV from your new encounter. So, its not a "whole other story" - it is in fact, the transmission story.

Sounds like you are having unprotected sex before either of you 2 did the recommended things - had no unsafe sex for at least a month, to exclude any possible window period, then got both reliably tested HIV-, and then both come to a position of trust and fidelity to start barebacking.   Hey, not like some of us haven't been there, so this isn't a schoolmarm lecture.  Just providing the facts.....

“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline prismatic

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Re: Newly diagnosed after PEP
« Reply #7 on: August 19, 2014, 10:49:39 AM »
Its possible ... so call your doctor and have them do additional testing . Your thread is OK here just do not post anywhere else until you have been confirmed as positive .

Yeah, I have an appointment tomorrow for another test, and no problem, understood  :)

Offline prismatic

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Re: Newly diagnosed after PEP
« Reply #8 on: August 19, 2014, 10:53:57 AM »
I hope you had a false positive...

I underlined above because something is not sinking in.   If the PEP worked you got HIV from your new encounter. So, its not a "whole other story" - it is in fact, the transmission story.

Sounds like you are having unprotected sex before either of you 2 did the recommended things - had no unsafe sex for at least a month, to exclude any possible window period, then got both reliably tested HIV-, and then both come to a position of trust and fidelity to start barebacking.   Hey, not like some of us haven't been there, so this isn't a schoolmarm lecture.  Just providing the facts.....


Something isn't sinking right with me either, which is why I plan on meeting the doctor this week, and finding out what the possibilities were. Yeah, no worries, I appreciate the honesty, and waiting a month would have been the right idea. Especially because I still needed my final blood work from my ID doctor post PEP. Like I said, everything turned out Negative before, so the transmission must have been very recent and I'll know very soon.

What has me confused is that I had no idea an antigen blood test would pick up anything that I have done with him in the past 4 weeks? And he never came in me, so it's all hard to tell. Alas, I came back as reactive, and it's now time to take initiative and go for a final test. 

Online Jeff G

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Re: Newly diagnosed after PEP
« Reply #9 on: August 22, 2014, 07:27:27 PM »
I got your mod report ...There is no need to take the thread down and as a matter of fact we do NOT allow the deletion of anything on the forum . Why do you want the retract what you shared with us ?

Offline prismatic

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Re: Newly diagnosed after PEP
« Reply #10 on: August 23, 2014, 07:59:08 AM »
Hey Jeff,

I was just concerned that my title would be misleading. Just want to make it clear that PEP IS effective, just perhaps the new exposure was definitely after PEP treatment.

Online Jeff G

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Re: Newly diagnosed after PEP
« Reply #11 on: August 23, 2014, 08:03:17 AM »
Thanks you for your concern . I can change the title of your thread to exposure after PEP if you like but there really is not a need to do so at this point . Have been back to the doctor yet and what did you find out ?

Offline zach

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Re: Newly diagnosed after PEP
« Reply #12 on: August 23, 2014, 08:47:56 AM »
good luck on your confirmations... its a rough time to sweat out not knowing and fearing

we're all keeping our fingers crossed for you

Online Jeff G

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Re: Newly diagnosed after PEP
« Reply #13 on: August 23, 2014, 08:55:43 AM »
Its important to update this thread, especially in light of the fact you/we are concerned with the impact it might have on other people who struggle with testing and trust in the science behind it .   

Offline prismatic

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Re: Newly diagnosed after PEP
« Reply #14 on: August 23, 2014, 09:11:10 AM »
Thanks, boys <3

I seriously appreciate all the support. I forgot to update because I've been trying to take it all in. I'm awaiting the final blood work from my ID doctor. I also informed the boy I've been seeing, and he freaked out...which is understandable. I told him that I like him a lot and that he needs to get tested. I wouldn't feel right going on vacation with him, having sex (now with condoms), and knowing that I showed up as reactive to an antigen test.

So far, I'm happy I told this boy, as well as my best friend. As far as my Mom goes, I believe that can wait, right? I feel like I should say something once I start treatment and am much more knowledgable about this virus.

Offline prismatic

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Re: Newly diagnosed after PEP
« Reply #15 on: August 23, 2014, 09:15:47 AM »
Also, I have a few more questions about HIV, and I don't know where I should post them. One concerns me very much, and I'm hoping that I may ask it here. I'm short with a very small/thin body frame...with my diagnosis, do I have to start going to the gym to bulk up? I have a fast metabolism, so I've always been super thin. 5'4", barely 110lbs. I see so many articles about wasting and lipodystrophy that I can't help but be concerned  :-\

Online Jeff G

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Re: Newly diagnosed after PEP
« Reply #16 on: August 23, 2014, 09:38:09 AM »
Also, I have a few more questions about HIV, and I don't know where I should post them. One concerns me very much, and I'm hoping that I may ask it here. I'm short with a very small/thin body frame...with my diagnosis, do I have to start going to the gym to bulk up? I have a fast metabolism, so I've always been super thin. 5'4", barely 110lbs. I see so many articles about wasting and lipodystrophy that I can't help but be concerned  :-\

Exercise as we all know does a body good but you should not expect it to impact on your prognosis one way or the other . If an HIV diagnosis is a wake up call to take care of ourselves a little better in general then go for it .

Lipo issues are not nearly as common with the new meds and take years to manifest if at all so you should not be worried even a little bit with this aspect of living with HIV at this point in your diagnosis ... most likely you will never suffer those side effects treatment, very unlikely . 

Online Jeff G

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Re: Newly diagnosed after PEP
« Reply #17 on: August 25, 2014, 10:34:28 AM »
You may well have got a false positive and need to have your test confirmed to rule that out .
Please only post in this one thread until you have been confirmed HIV positive . 

Just so you know .

Offline prismatic

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Re: Newly diagnosed after PEP
« Reply #18 on: August 25, 2014, 10:58:17 AM »
Just so you know .

Oh, no! I definitely went ahead of myself  :-X This week I should have the final results, but until then, I shall stay here in this thread only. Sorry, Jeff!

Offline prismatic

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Re: Newly diagnosed after PEP
« Reply #19 on: August 27, 2014, 04:36:28 PM »
Hi Boys,

Just wanted to update: The boy I was seeing (having sex BB) came back negative. I'm so relieved because I was getting nervous that I did infect him, but that wasn't the case. He got his lab results, and the only Positive result he received was for Ghono (which was what he gave me in the first place).

So far, I'm awaiting my lab results/viral load testing from my ID doctor. I remember they took about 6/7 tubes, so I'm assuming she also wants to see which medications I'll be compatible with?

P.S.- Sending hugs to you boys. This forum is helping me out so much on coping with my Poz diagnosis, you guys have no idea <3
« Last Edit: August 27, 2014, 04:38:33 PM by prismatic »

Offline prismatic

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Re: Newly diagnosed after PEP
« Reply #20 on: September 04, 2014, 12:42:25 PM »
***UPDATE****

Hey Boys!

So, I finally have an update! My doctor called, and informed me that I do in fact have HIV. I'm no longer in that depression mode, although I'm sure I will have ups and downs in the future...but who doesn't? I'm ok with what I have, and I've been dealing and coping well so far.

My VL= 820
CD=384

Are those good numbers? My doctor prescribed me Truvada+Isentress...but she just replaced Isentress with Tivicay.
« Last Edit: September 04, 2014, 12:50:10 PM by prismatic »

Offline mecch

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Re: Newly diagnosed after PEP
« Reply #21 on: September 04, 2014, 12:50:33 PM »
VL is totally excellent.
CD4 is so so.  You'll probably know a few months in what CD4 range you are looking at for the next years.  People plateau at a certain level from the HAART, and then it can start rising years into treatment.

I don't follow your point about Tivicay. 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline prismatic

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Re: Newly diagnosed after PEP
« Reply #22 on: September 04, 2014, 12:54:25 PM »
VL is totally excellent.
CD4 is so so.  You'll probably know a few months in what CD4 range you are looking at for the next years.  People plateau at a certain level from the HAART, and then it can start rising years into treatment.

I don't follow your point about Tivicay.

Aah, gotcha. Does this mean that I'm more prone to infections?  :-\ Perhaps I should start taking more vitamins, and find ways to help my immune system?

Also, I had a slight typo, my apologies. I meant to say, she originally prescribed Truvada+Isentress, but she decided to replace Isentress with Tivicay. Hopefully that should help me out by my next blood test in October.

Offline mecch

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Re: Newly diagnosed after PEP
« Reply #23 on: September 04, 2014, 01:07:33 PM »
Aah, gotcha. Does this mean that I'm more prone to infections?  :-\ Perhaps I should start taking more vitamins, and find ways to help my immune system?

Its not in the low CD4 territory where infections are a concern.  Its just lowish. But will rebound, maybe even quickly, when you start medicine.
Do you have a poor diet? If you have a nutritious diet you do NOT need vitamins they do not help HAART treatment be more effective.
I don't know anything that helps the immune system that competes or compares to HAART.  Some immune supplements are a no-no for people on HAART.

I don't know anything about Tivicay so can't say anything there.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Online Jeff G

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Re: Newly diagnosed after PEP
« Reply #24 on: September 04, 2014, 01:11:38 PM »
I agree with Mecch ... getting proper rest and eating well is a far better choice than looking for supplements . You are going to be OK and I would not be surprised if you get to undetectable in a few short weeks with you numbers ... maybe even days . 

Offline prismatic

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Re: Newly diagnosed after PEP
« Reply #25 on: September 04, 2014, 01:50:50 PM »
Thanks for the info boys, I'm taking notes. Yeah, I mean, I'm 24 living in Brooklyn and with my budget, sometimes my diet can be extremely poor; I'm talking having cereal and milk for dinner on most nights type of diet...but I can fix that by budgeting my money better and using it for produce and whatnot. I was going to consider Nature Made vitamins and those Ensure beverages, specifically the one that helped boost the immune system. Should I disregard those as well?

Offline mecch

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Re: Newly diagnosed after PEP
« Reply #26 on: September 04, 2014, 02:51:29 PM »
Im really not up on the new molecules and their interaction with herbs and supplements.  I know with the last generation for example echinacea was a no-no with haart. 
I was your age and poor in Brooklyn man I know from which you speak but there's no financial excuse for that diet.  Its sounds to be based on convenience, ignorance of nutrition, and laziness more than poverty.
You know it doesn't matter if one is HIV+ or HIV-  - cereal for dinner??? How about rice and beans and simple vegetables.... 
You are not going to have a nice time in your 30's 40's and beyond with your current diet.
Can you take a nutrition class?  Can you get a doctors' prescription to see a nutritionist?
You are 24 you don't need Ensure.
Go to any supermarket and start buying real "whole" foods in your budget. Geez you could buy a bag of carrots and eat one a day. how much does that cost - nickels and dimes, no?
Can you join a food coop?  if you go to a healthy but affordable food store, you'll start to see ONLY pretty healthy food, so then you can go to a grocery store and by osmosis also know which foods are healthier to buy... anywhere...
Brown rice.
Whole wheat pasta.
Oatmeal
Kasha
bulgur
quinoa
beans
lentils
potatoes
eggs
plain unsweetened storebrand yoghurt

if you don't want to cook everyday, fine. Learn to make whole grain based salads. chili. soup in the winter.
make a pot of soup and when you come home at night you can have soup - hey live it up - some sour cream in it, or bread and butter, etc etc.



“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline prismatic

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Re: Newly diagnosed after PEP
« Reply #27 on: September 04, 2014, 03:02:20 PM »
Im really not up on the new molecules and their interaction with herbs and supplements.  I know with the last generation for example echinacea was a no-no with haart. 
I was your age and poor in Brooklyn man I know from which you speak but there's no financial excuse for that diet.  Its sounds to be based on convenience, ignorance of nutrition, and laziness more than poverty.
You know it doesn't matter if one is HIV+ or HIV-  - cereal for dinner??? How about rice and beans and simple vegetables.... 
You are not going to have a nice time in your 30's 40's and beyond with your current diet.
Can you take a nutrition class?  Can you get a doctors' prescription to see a nutritionist?
You are 24 you don't need Ensure.
Go to any supermarket and start buying real "whole" foods in your budget. Geez you could buy a bag of carrots and eat one a day. how much does that cost - nickels and dimes, no?
Can you join a food coop?  if you go to a healthy but affordable food store, you'll start to see ONLY pretty healthy food, so then you can go to a grocery store and by osmosis also know which foods are healthier to buy... anywhere...
Brown rice.
Whole wheat pasta.
Oatmeal
Kasha
bulgur
quinoa
beans
lentils
potatoes
eggs
plain unsweetened storebrand yoghurt

if you don't want to cook everyday, fine. Learn to make whole grain based salads. chili. soup in the winter.
make a pot of soup and when you come home at night you can have soup - hey live it up - some sour cream in it, or bread and butter, etc etc.

Haha, yeah, I guess you're right. I appreciate the recommendations! It's part laziness too, and honestly if this dx is a wake up call to my sh*t together, then I will do so. Luckily, there's a Trader Joe's near me, they have great produce at a cheap price. It's time to stop the constant pizza nights, and get on a better diet.  ;)

Offline mecch

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Re: Newly diagnosed after PEP
« Reply #28 on: September 04, 2014, 03:07:56 PM »
pizza and salad sounds better to me than cereal and milk.
what kind of cereal?
next time you go out for pizza get a meatball grinder without cheese. now thats some real protein.
By next Monday I want you to have learned how to hard boil eggs and have done so. You can have hard boiled eggs in many different salads, or in sandwiches.
You should have basic standbys ready to eat at home, better than cereal.

Nobody expects you to be a gourmet cook or have a gourmet kitchen. 

Im sorry I don't live in Brooklyn I could take you around Trader Joes and make suggestions.  Do you have any friends who do eat well? Ask them to give you a hand.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline mecch

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Re: Newly diagnosed after PEP
« Reply #29 on: September 04, 2014, 03:11:41 PM »
You can see the diagnosis as a wake up call if that motivates you.
What I'm saying is that this is basic adult health, HIV+ or HIV-  - just something you have to add to how you live your life.
I forget what its called in English.  Healthy living?
In french its Hygiène de vie
http://fr.wikipedia.org/wiki/Hygiène_de_vie

Your parents, grandparents, your school, was supposed to have taught you some of this but I guess you didn't want to pay attention!  :o
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline mecch

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Re: Newly diagnosed after PEP
« Reply #30 on: September 04, 2014, 03:18:26 PM »
Don't piss near electricity or electrified railroads. Don't shelter under trees in a thunderstorm on the golf course.  Do go to the doctor and dentist and do floss your teeth. Don't live on junk food. Steer clear of crazy people in public places. Don't take any wooden nickels. Stop and smell the roses. Don't drunk text.  Don't make sex tapes.  Don't talk with your mouth full.  Say please and thank you. etc etc.
Plus Manly P Hall’s 10 Rules for living well. Google that.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline prismatic

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Re: Newly diagnosed after PEP
« Reply #31 on: September 08, 2014, 11:36:14 AM »
pizza and salad sounds better to me than cereal and milk.
what kind of cereal?
next time you go out for pizza get a meatball grinder without cheese. now thats some real protein.
By next Monday I want you to have learned how to hard boil eggs and have done so. You can have hard boiled eggs in many different salads, or in sandwiches.
You should have basic standbys ready to eat at home, better than cereal.

Nobody expects you to be a gourmet cook or have a gourmet kitchen. 

Im sorry I don't live in Brooklyn I could take you around Trader Joes and make suggestions.  Do you have any friends who do eat well? Ask them to give you a hand.

Lol, No, no, don't get me wrong, I can cook, it's just that when you start out, you're limited to certain advantages as if you were home...ESPECIALLY when you just start out. I'm sure you know how that can be. Regardless, I brought some more pots and pans over the weekend, and I made some grilled salmon and veggies. Soooo good!
I can finally resume to making homemade meals.  ;D I brought some of the other stuff you listed as well, so I'll probably try them out at some point. Gracias

Offline mecch

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Re: Newly diagnosed after PEP
« Reply #32 on: September 15, 2014, 06:09:17 PM »
voila...

“From each, according to his ability; to each, according to his need” 1875 K Marx

Online tednlou2

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Re: Newly diagnosed after PEP
« Reply #33 on: September 16, 2014, 12:20:29 AM »
Plain, unsweetened yogurt?  I thought that was just used as a base in other dishes.  I've tried it and yuck, yuck, yuck.  IMHO, of course.

Offline pittman

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Re: Newly diagnosed after PEP
« Reply #34 on: September 17, 2014, 11:56:13 PM »
Oh the plain yogurt is the best, you can control how much sugar you use. I start with just half a cup and then add a dollop of fresh creamy yogurt on top.  ::)

Seriously though, if you ever picked up a container of normally sweetened, non-Greek style (i.e., high protein styles) yogurt and compared its nutrition information to a container of dessert pudding, you will realize that it is pretty much the same. Both made from milk, both have about the same sugar, etc.  Yogurt might have some fruit in it, and the live cultures are an added bonus, but basically is a dessert/treat.   If used as such, it could be considered a much healthier type of dessert than some others choices out their, but it is not the super healthy diet food so many think of it as. 

 


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