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Author Topic: newly diagnosed positive, the adventure begins...  (Read 1235 times)

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Offline awakening

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newly diagnosed positive, the adventure begins...
« on: June 20, 2016, 08:22:28 AM »
Reading the posts in this forum really helped calm me down last night.

I am a 47 year old male and live in the U.S. I tested positive June 16, 2016 by quick finger prick test (confirmed the next day by blood draw, HIV-1). My last test was March 1, 2016 (negative). So I was infected somewhere in the last 6 months, likely 3 months which is when I suspect I was infected thanks to connections on social dating apps (got some blood in my mouth during sex which was the result of shaving genital hair)...though I will never know for sure. Other than that I had practiced safer sex (condoms always used by both). Given the condom use I was shocked to see the results and went into a major panic mode. I have not had a "seroconversion" experience to date.

Being the gay father of two school-age children (formerly married to a woman) adds to the anxiety as does worrying about the status of my partner of approximately one year. We've been practicing safe sex but have had a couple of moments of "less safe" activity which worries me. He went and got tested immediately and we await those results (which will require retesting until out of the window period).

I will try to document my experience here for others to help contribute to the effort to support others. In the meantime I have a few questions:

1. My doctor immediately ordered blood tests which I went for but they have to be sent out to a lab (4-5 days processing). He said, "let's schedule an appointment in a couple of weeks to review the tests." I pressed for one week as I don't want too much time to pass before starting treatment. I've read some posts where doctors started treatment immediately. One of the tests is for a genetic abnormality which makes some of us allergic to one of the common drugs. So I understand needing those results, but is there value in him starting me on a less risky drug in the meantime before we even get the results? Being in a somewhat early detection mode I worry about each day going by untreated.

2. I understand viral loads can be quite high initially. My partner and I continued to kiss (with saliva exchange) after my diagnosis. I know kissing is not considered a transmission method, but could a very high viral load make even saliva dangerous? In other words, should I be waiting until loads are lowered before being intimate in that way?

3. Can an employer (U.S.) find out your status from your insurance company?

That's all for now.

Offline Wade

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Re: newly diagnosed positive, the adventure begins...
« Reply #1 on: June 20, 2016, 09:23:18 AM »
Hi and Welcome to the Forums
Saliva is not an infectious body fluid so it is not dangerous to kiss your partner and no one has ever been infected the way you have described. But I wont go there yet.
Keep us posted on your progress and Good Luck

Best, Wade
HIV 101 - Basics
 HIV 101
 You can read more about Transmission and Risks here:
 HIV Transmission and Risks
 You can read more about Testing here:
 HIV Testing
 You can read more about Treatment-as-Prevention (TasP) here:
 HIV TasP
 You can read more about HIV prevention here:
 HIV prevention
 You can read more about PEP and PrEP here
 PEP and PrEP

Offline awakening

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Re: newly diagnosed positive, the adventure begins...
« Reply #2 on: June 20, 2016, 09:29:10 AM »
Thanks for the reply. Just curious, what do you mean by "But I wont go there yet"?

Offline zach

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Re: newly diagnosed positive, the adventure begins...
« Reply #3 on: June 20, 2016, 09:56:55 AM »
Thanks for the reply. Just curious, what do you mean by "But I wont go there yet"?

the long form explanation that discredits your suspected mode of infection... it's ok, just let it go please... we don't really care how you were infected... it will never matter here, or in your treatment.

to hit on your questions

1. Genotyping is done before you're put on medication, to check to see if your virus already has any resistances. The sensitivity test you're talking about is for triumeq... do both, and be patient for the results, then you and your doctor will select a medication.

2. Kissing is not a transmission method. That was firmly established in the 1980s. You viral load isn't relevant to that. Shaving isn't relevant to that.

3. no, HIPAA privacy laws protect you from that

edit: and welcome to the boards, glad you have found us so quickly. also, happy fathers day, from one dad to another
« Last Edit: June 20, 2016, 10:05:03 AM by zach »

Offline Wade

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Re: newly diagnosed positive, the adventure begins...
« Reply #4 on: June 20, 2016, 10:02:49 AM »
Couldn't have said it better myself... Thanks Zach
HIV 101 - Basics
 HIV 101
 You can read more about Transmission and Risks here:
 HIV Transmission and Risks
 You can read more about Testing here:
 HIV Testing
 You can read more about Treatment-as-Prevention (TasP) here:
 HIV TasP
 You can read more about HIV prevention here:
 HIV prevention
 You can read more about PEP and PrEP here
 PEP and PrEP

Offline awakening

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Re: newly diagnosed positive, the adventure begins...
« Reply #5 on: June 21, 2016, 07:29:42 PM »
Update: My partner of one-year tested negative so that's a huge relief. Still needs a confirmation test in a few months. But one hurdle at a time. Now time to focus back on myself.

It's a challenging time, when in-between getting initial blood test results and getting a  treatment plan in place.  Even though I felt fine leading up to the diagnosis and still do,  it can be disconcerting to think about walking around with the virus living and possibly growing inside of me in the meantime.  It becomes easy to imagine symptoms.

I was given a book by a local HIV advocacy group.  It's from a few years back and this book recommends that people with strong t-cell counts wait before starting medication.  I believe this was in light of the possible negative effects of medication.  But from what I've been able to read online, the current recommendation seems for everyone to get started on meds right away.

 Are there still instances where a doctor would recommend holding off on medication?

Offline zach

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Re: newly diagnosed positive, the adventure begins...
« Reply #6 on: June 21, 2016, 07:37:32 PM »
You live in the United States, current recommendations are to start immediately.

You are in a serodiscordant relationship... Tasp (Treatment as Protection) should be a strong motivator for you to go on meds to protect your partner. With a reliably suppressed viral load, you stand next to no chance of transmitting the virus to your partner.

Has your doctor said anything about waiting? If they do, get a very clear explanation about their reasons.

Let me ask you a question. What would you be waiting for? You say possibly growing, let me put that to rest. HIV is working overtime, right now, every second. Considering that HIV is damaging you, how much damage are you willing to allow before you fight back? The longer you wait, the more difficult that fight will become.

Offline awakening

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Re: newly diagnosed positive, the adventure begins...
« Reply #7 on: June 22, 2016, 04:29:11 PM »
Thank you Zach. I am all for starting ASAP. I believe doctor is too. Just wanted to confirm latest recommendations. Got all STI results and were all negative including HEP-C. Just awaiting the HIV specific results to get treatment plan.

Since I may have a high viral load yet, are we crazy for continuing to wet kiss? Definitely refraining from "sex" other than touching.



Offline JimDublin

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Re: newly diagnosed positive, the adventure begins...
« Reply #8 on: June 23, 2016, 05:16:15 PM »
Why are you refraining from sex ?

Just practice safer sex and use condoms correctly & consistently. 

Jim
HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline zach

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Re: newly diagnosed positive, the adventure begins...
« Reply #9 on: June 23, 2016, 06:05:26 PM »
you never have to refrain from kissing on account of HIV

deep wet passionate kissing... doesn't matter what the viral load is

kissing is a risk for transmission of HIV

surgeon general c everett koop firmly established that in the 1980s, lets not go back to those kinds of fears

right now you're dealing with self stigma, and sometimes that's the hardest thing to come to terms with... don't give HIV any more than it deserves. be safe, that's all you have to be. don't fear things that aren't risks

Offline awakening

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Re: newly diagnosed positive, the adventure begins...
« Reply #10 on: June 23, 2016, 09:07:52 PM »
Got a call from the lab today that they needed me to come back to give more blood as they had accidentally requested the wrong test in place of the geneomic test for Abacavir sensitivity and had to re-do.  The five dollar gift card they give me as consolation for the error  does not quite make up for the increased anxiety of delayed treatment!

Was feeling fine before diagnosis now am feeling a bit of abdominal cramps and gas. Quite possibly stress induced, but the mind can play tricks.


Offline awakening

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Re: newly diagnosed positive, the adventure begins...
« Reply #11 on: June 23, 2016, 09:09:37 PM »
Why are you refraining from sex ?

Just practice safer sex and use condoms correctly & consistently. 

Jim

In principal I agree, but I was using condoms when I contracted HIV so I am a bit fearful for my partner yet.

Offline gorka

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Re: newly diagnosed positive, the adventure begins...
« Reply #12 on: June 23, 2016, 09:35:42 PM »
I think you meant kissing is NOT a risk for transmission of HIV

"kissing is a risk for transmission of HIV"


you never have to refrain from kissing on account of HIV

deep wet passionate kissing... doesn't matter what the viral load is

kissing is a risk for transmission of HIV

surgeon general c everett koop firmly established that in the 1980s, lets not go back to those kinds of fears

right now you're dealing with self stigma, and sometimes that's the hardest thing to come to terms with... don't give HIV any more than it deserves. be safe, that's all you have to be. don't fear things that aren't risks

Offline zach

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Re: newly diagnosed positive, the adventure begins...
« Reply #13 on: June 23, 2016, 09:47:08 PM »
thank you for that catch gorka, of course i meant

KISSING IS NOT A RISK

Offline mecch

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Re: newly diagnosed positive, the adventure begins...
« Reply #14 on: June 23, 2016, 11:05:59 PM »
awakening hi welcome

it won't make a difference if you start tomorrow or 2 weeks don't stress over the minute details.

tell the organisation that gave you that book that you don't appreciate being given old info, that it's really NOT helpful or appropriate.

in fact throw that book away and read the lessons on this forum, for example. I bet there is other old info or misinfo in that book.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline JimDublin

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Re: newly diagnosed positive, the adventure begins...
« Reply #15 on: June 23, 2016, 11:24:30 PM »
In principal I agree, but I was using condoms when I contracted HIV so I am a bit fearful for my partner yet.

Look I don't mind how you think you got infected, a few posts ago it was blood in the mouth.
If your holding off because you uncomfortable at the moment , each to his own but at some stage you will need move past this and start with safer sex, to begin with it will most likely mean using condoms correctly & consistently.

Jim
HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline zach

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Re: newly diagnosed positive, the adventure begins...
« Reply #16 on: June 24, 2016, 12:12:59 AM »
We don't care how you were infected. We don't care what you tell yourself about how you were infected. Please understand that the am I posters read these threads. When you make claims like that the negatives that read it latch onto it and their fears and anxiety skyrocket.

Sex with a condom is safe sex. You would know if it tore, there would be no doubt. And dont try the micro holes angle please.

Just let it go. It doesn't matter. Moving forward is the only thing that matters. Don't look back, it doesn't do anything for you. This is twice you've done this.

Offline awakening

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Re: newly diagnosed positive, the adventure begins...
« Reply #17 on: June 24, 2016, 07:12:50 AM »
I appreciate you refocusing me on moving forward as I do have a tendency to get stuck in regretting the past/worrying about the future at the moment. The challenge that a poz diagnosis brings to us is the challenge to live more fully in the moment. But I also think it is a stage in the grieving process for some of us.

I respectfully disagree however about silencing such thoughts on the forum. For those who are negative wondering "Am I?", reading stories of those who 'thought' they were being safe might help encourage them to be safer which to me could be a good thing. And for those who are poz, it can be helpful to see that some others share the same thought process. For example, after reading Gladiator's thoughtful first post this morning, I felt reassured to know that I was not alone in my experience. And though you are right, it's definitely not helpful thinking, seeing a reflection of yourself in others can be helpful in the process of moving on.

Offline Gladiator

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Re: newly diagnosed positive, the adventure begins...
« Reply #18 on: June 24, 2016, 07:17:17 AM »
Awekening...I'm with you...you're not alone at all :D

Offline zach

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Re: newly diagnosed positive, the adventure begins...
« Reply #19 on: June 24, 2016, 07:47:04 AM »
That's cool to

Respecfully, you didn't get hiv from blood in your mouth from shaving as you first claimed.

Respecfully, if you were using an impact condom that covered the head of the penis, you weren't infected that way either as claim the second time.

You did one of three things. Either, you shared a needle. Or you had unprotected vaginal sex. Or, you had unprotected anal sex. Reflect, process, accept, move on.

Offline JimDublin

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Re: newly diagnosed positive, the adventure begins...
« Reply #20 on: June 24, 2016, 12:59:47 PM »
Hi

With all respect you also think kissing is a risk, and shaving nicks could be the issue and so to summarize you simply don't have a clue,  yet at the same time:

Quote
For those who are negative wondering "Am I?", reading stories of those who 'thought' they were being safe might help encourage them to be safer which to me could be a good thing.

So you don't know, yet you feel the need or have an agenda to spread nonsense for the  "Am I" section to read. Look you can discuss whatever you like with in limits however members with agenda's don't last long here.

Jim
HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline awakening

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Re: newly diagnosed positive, the adventure begins...
« Reply #21 on: Today at 03:49:36 PM »
Moving on from the debate over how I was infected...got my test results and treatment plan.

Tested negative 3/1/16
No noticeable seroconversion event, went in for routine "peace of mind check" on 6/16/16 and tested positive via rapid blood prick test ("peace of mind not achieved")
Confirmed positive 6/17/16, HIV-1

Blood drawn 6/17/16:
CD4 - 524 cells/uL (30%)
Viral load - 22,900
Negative for HLA-B 5701 genome (so Abacavir based drugs are an option)
Negative for all other STIs

Rx for Triumeq ($2200/month US retail price, thankful for insurance and ADAP!)

ID specialist requests a viral load check in 4 weeks, a TB test and a Prevnar vaccination for TB by next appointment.

Although it's sad that after 30+ years of HIV education and knowledge the virus is still spreading, I am fortunate to be here in 2016 and not 1982.

If I live another 40 years and stick to this regime, tomorrow is the first of 14,600 pills. But hey, that's 14,600 days of life! Which at today's non-generic cost per pill would be about one million dollars if paid out of pocket.   :o


 


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