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Author Topic: Another newbie  (Read 4114 times)

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Offline vertigo

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Another newbie
« on: September 26, 2012, 03:30:20 PM »
Hi All,

Have been reading these boards since May and thought it was finally time to post and say hello.

I'm a 41 y/o gay guy.  Contracted HIV this past April.  Tested three weeks post-exposure: Western Blot negative but RNA test positive, with VL 586,000.  Complete labs done in May: VL 181,000 and CD4 525 / 30.9%.  Western Blot also positive at that time.  Genotyping shows no resistance.  No other STI's.

The first week was pretty awful, frankly.  Was terrified I might have infected my partner (the risky sex was extra-curricular).  Thankfully that did not turn out to be the case, and it's been a steady process of adapting to the new reality since then.  These forums have been a great help, and thanks to all here for such a good exchange of information and emotional support.

My doc had some dire warnings how the first year could be really hard, both emotionally and physically.  I spent the summer waiting for the shoe to drop, but honestly I feel fine. Have always been very fit -- runner, weights --  and my routine hasn't changed.  It helps a lot that my partner and I are still together, though it was touch-and-go for a while.

So just got my 2nd full set of labs done:  VL 82,000  CD4 633 / 22.6%  Was hoping my VL set point would be lower, but it is what it is.  I don't really want to start treatment yet, and doc says he is ok with me waiting.  Am certainly aware of the good arguments otherwise.  Any thoughts from the pros on here?

Best -

Online mecch

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Re: Another newbie
« Reply #1 on: September 26, 2012, 04:08:57 PM »
Why don't you want to start treatment yet.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline jkinatl2

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Re: Another newbie
« Reply #2 on: September 26, 2012, 04:19:35 PM »
Hello! Welcome to the forums! Sorry you had to find us, glad you did.

Good to have a partner who is supportive. That's always a plus.

Your numbers are OK, and your viral load, while high, is consistent with a new-ish infection. If it stays that high, however, you might want to consider treatment. You will notice that your energy level might start to decline otherwise. Your body is, after all, pretty busy fighting.

Lots of people talk about how much more energy theyhad after the drugs knocked their viral load down to undetectable, so it's a quality of life think in that respect. In addition, the lower your viral load, the less potential risk to your partner if there should be a condom slip/rupture. Just some stuff to consider.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline intheusa

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Re: Another newbie
« Reply #3 on: September 26, 2012, 09:15:39 PM »
On your first western blot,  did any of the markers come up?  If so which ones .    Need help understand how  this test missed all the markers.  I figured afew might pop up. 

Offline jkinatl2

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Re: Another newbie
« Reply #4 on: September 27, 2012, 12:40:09 AM »
On your first western blot,  did any of the markers come up?  If so which ones .    Need help understand how  this test missed all the markers.  I figured afew might pop up. 


Are you HIV positive, intheusa? YOu have posted three questions, and they seem to be centered on testing. You surely know that only HIV positive people are allowed to post anywhere besides "Am I Infected," "Someone I Care About Has HIV," and "Off Topic."

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline vertigo

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Re: Another newbie
« Reply #5 on: September 27, 2012, 02:34:35 AM »
Hey again,

JK, thanks for the greeting.  I'm definitely on the lookout for a loss of energy, but so far no issues.  Keeping my partner safe is a biggie, though, for sure.  So far we haven't had sex since my diagnosis.  I don't see us doing too much until I'm on meds, although after almost 12 years together sex is no longer central to our relationship.

Mecch, the main reason for waiting is that I want to see how my body does on its own for a little bit.  I'm sure I will be on meds for a very long time, so don't want to rush into it too fast if not necessary.  It appears that I'm not a rapid progressor, so should have a little time.  Also, living in the USA, insurance is an issue.  There will be a big co-pay, and the latest meds are not on my carrier's preferred drug list.  (Some of the stuff on there reads like a playbook from 1999.  Zerit, anyone?)  So initiating treatment is likely to be a project.

intheusa, your question is too technical for me.  Also irrelevant to my case.  I was inside the window period for antibody testing at the time of the first test, hence the neg result.  The RNA test told a different story, however, which unfortunately turned out to be correct.

Cheers - 

Online mecch

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Re: Another newbie
« Reply #6 on: September 27, 2012, 03:01:21 AM »
Mecch, the main reason for waiting is that I want to see how my body does on its own for a little bit.  I'm sure I will be on meds for a very long time, so don't want to rush into it too fast if not necessary.  It appears that I'm not a rapid progressor, so should have a little time.  Also, living in the USA, insurance is an issue.  There will be a big co-pay, and the latest meds are not on my carrier's preferred drug list.  (Some of the stuff on there reads like a playbook from 1999.  Zerit, anyone?)  So initiating treatment is likely to be a project.

Ok affording the best treatment is a handful to manage. I see why you wouldn't want to start right away and don't think you should, unless the energy level starts effecting your work or life.  What is your plan to get answers and possible solutions for affording the best drugs when you need them.  Is there an ASO you can visit where you can get expert advice on such challenges.

As an aside, I have certainly heard of high copays in the USA.  And certainly of millions with no insurance.  However I didn't know that US insurance companies are allowed to deny the latest HIV medicine that has been approved. ?  !  Your Insurance company doesnt allow Isentress?  Slightly older but still first line Reyataz.  Atripla or its components? 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline jkinatl2

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Re: Another newbie
« Reply #7 on: September 27, 2012, 03:14:54 AM »
I totally understand, and from what you write you are making the best decisions for you and your situation.

I live in the US as well, so I know the drill. And seriously, it would be easier to find a doctor to prescribe Viagra over the phone than Zerit. Shudder.

Sadly, it looks like while you see how things go, you might want to look into your insurance situation, and make sure it evolves as much as it can before meds become a certainty. Luckily for you, that might be a year or two. Just don't do what everyone else does; put it off until the last minute and freak out :)

I am thinking perhaps (and I say this as someone in hos 40s as well) that maybe that other shoe's not going to drop. Being someone who has seen the Dark Ages, and who has the intellect and comprehension skills to read up (and act) on the science behind HIV, there might not be the same reaction as someone, say, in his 20s to whom HIV has always and only been a vague, dark boogeyman to scare folks away on GRINDR.

Then again, I paint with a broad brush. My partner of a year and change is in his twenties, and he really didn't do more than bat an eye and, well, do a google search and come here for a pretty thorough education. Well, not only on HIV (This site really has cutting edge prevention stuff) but he got to see how I react when baited online (poorly) so, there's that.

There are a lot of folks here with a tremendous amount of wisdom and knowledge. In the treatment category, you might want to check out posts by a guy who goes by Newt. And of course, the LESSONS sections are a breezy read.
"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline vertigo

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Re: Another newbie
« Reply #8 on: September 27, 2012, 03:54:09 AM »
mecch, some really good questions there and I don't have the answers yet.  Maybe it won't be as difficult as I fear.  Yet already I've had to tussle with insurance just to get doctor & lab costs paid, and that's small fry compared to going on meds.

Atripla is on the preferred list, but Sustiva isn't going to work for me due to my job requirements.  Reyataz is on it, too, but the jaundice issue makes me leery, and would prefer to stay away from the PI's and norvir altogether.  I've been leaning towards Isentress/Truvada as the eventual choice.  As it turns out, my doc said either that or Complera would be his top picks.  Neither Isentress or Complera is on the preferred list, but I don't know if that means I can't get it -- it might just cost me more.  TBD!

JK, thanks for your informed comments as well.  I'll probably bring up the drug/insurance issue with my doc when I see him next in Jan.  He has a big HIV practice, so I'm sure knows how the game is best played.  And I have enjoyed surfing around the site and reading some of the content, Newt's expert posts included.  Quite a lively discussion you guys all had going regarding disclosure just recently!  I have a question on that topic myself, but will save it for another day.

Take care -


Offline jkinatl2

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Re: Another newbie
« Reply #9 on: September 27, 2012, 04:42:51 AM »
Just to chime on one more time:

Please don't rule OUT things like Atripla and others because of potential side effects. Honestly, if you do not have a pre-existing mental health condition you are extremely unlikely to have a life-altering sife effect from the Sustiva component. I had such a side effect, unfortunately. but then again I have a history of Major Depressive Disorder. While I use my situation as a cautionary tale to those who think the drugs are harmless, I cannot claim - and perhaps you should reconsider- whether the experiences of some are dictatorial in absence of all the relevant information.

Atripla might be just the thing for you, in other words.

As for the Complera, I am unfamiliar with most of it's mechanics, sadly. But I personally am on Isentress, Truvada, Norvir and Prezista (a double combo if you will) and so far I have had very few side effects, and none whatsoever that limited my ability to live my life.

Just be careful that you don't research your way out of many of the very effective medication regimen, just because they didn't work for some folks. I am not so married to my own experiences, for example, that I would try to talk anyone out of Atripla so long as their mental health history does not raise any red flags. And even then, of course, it really is the luck of the draw.

I'm certainly not singing the praises of one regimen over another, but please don't write one off because of side effects that might or might not manifest. Well, a caveat goes out for things like AZT and Zerit, which I would avoid if I could.

There are a lot of effective and relatively painless treatment options. And more in the pipeline. By the time meds become a reality for you, there might even be a treatment option that isn't even on the list. I am aware of several ongoing studies for bi-monthly treatment, and even ARV-free treatment with regular infusion therapy. These are just the studies I know about. I am sure there are others, and by the time you need meds, the concept might have evolved more than either of us might imagine.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline Ann

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Re: Another newbie
« Reply #10 on: September 27, 2012, 07:20:46 AM »

On your first western blot,  did any of the markers come up?  If so which ones .    Need help understand how  this test missed all the markers.  I figured afew might pop up. 



Are you HIV positive, intheusa? YOu have posted three questions, and they seem to be centered on testing. You surely know that only HIV positive people are allowed to post anywhere besides "Am I Infected," "Someone I Care About Has HIV," and "Off Topic."


intheusa, I also want an answer to Jonathan's question. If you have not been confirmed as hiv positive, you should be asking these questions about testing in the Am I Infected? forum ONLY.

If I do not receive a reply either here or in a PM (I'd rather the PM instead of further hijacking this thread), I will assume you are not positive and will prevent you from posting in forums where you are not permitted to post.

Please consider yourself warned!

Ann


edited to fix broken link
« Last Edit: September 27, 2012, 07:24:04 AM by Ann »
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: Another newbie
« Reply #11 on: September 27, 2012, 08:11:41 AM »
Hi Vertigo, welcome to the forums.

You might want to check out whether or not the individual components of Complera (rilpivirine + tenofovir + emtricitabine) are available on your list of allowed meds.

Tenofovir (aka Viread) and emtricitabine (aka Emtriva) are the two meds found in Truvada, and Truvada might be on your list.

Rilpivirine is marketed under the brand name of Edurant.

Having to take the individual components of Complera may mean more pills, but otherwise it's the same. If and when Complera becomes available on your list, you can then switch to the one-pill option.

You can read about the various meds in our Treatments pages.

Also, have you found the Lessons yet? I'd highly recommend you read through them. They're written in plain English and easy to digest and understand.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline vertigo

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Re: Another newbie
« Reply #12 on: September 27, 2012, 11:55:39 AM »
JK, good advice on keeping an open mind.  I've had to remind myself of that as I read about this stuff.  I'm sure if my doc eventually said he wanted me on a norvir-boosted PI, that I would go along and it would be fine.

That said, I still won't chance it with Atripla.  No, I don't have an existing mental health issue, but I do have a safety-sensitive job that requires me to work both days and nights.  So I can't just take it in the evening and sleep off the weirdness.  Some weeks I'm on-call 24/7.  So if I get called at 2am I have to be lucid, and not dizzy or in a fog.  Oh, and I also get drug tested, and understand that Sustiva can cause you to blow a test for marijuana.  Now THAT would be a conversation with my employer that I don't want to have.  So while I recognize that it has great clinical effectiveness, I'm going to take a pass based on the widely-reported CNS issues.

Ann, thanks for the welcome!  I've read some of the sections you suggest, but need to keep educating myself.  And good point regarding looking for the component drugs on my insurer's preferred list.

Online mecch

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Re: Another newbie
« Reply #13 on: September 27, 2012, 12:29:50 PM »
Here in Switzerland, sometimes the newest drugs are not on the "preferred" list for initial, first, treatment, and the doctor has to make the case that it is nevertheless necessary.  When Isentress was first approved for any use, it was not on a lot of lists for 1st treatment.  But then I think it became official that it was acceptable.  Anyway this is Swiss.  Anyway I was cycled eventually onto Isentress and then the insurance couldn't say anything.
Find an ASO and hopefully a person who will sit down and look at YOUR insurance and help you plan for what to do when its time.  Ahead of time, as others have said. And don't assume that what doesn't work for one person, doesn't work for you. 
The price of all these drugs is SHOCKING. SHOCKING!  Its important never to take this emotionally. You have nothing to do with the price of drugs and should never feel guilty about the cost. Not that you said that is a risk - guilt - but just in case.  It IS something that hits many newly diagnosed people pretty hard.  Holy shit!  This is an expensive disease! 

(A little anecdote. I had been on HAART for a couple of years.  In Switzerland, you can buy a coffee at the station or pay for a burger at McDo with a 1000 franc bill and people wont batt an eyelash. Yes, that's about 1000 US dollars.  So when I picked up my first 3 months of Isentress, the pharmacist remarked on how expensive it was! I was surprised that she would express that.  Never said it about the other regimes... Yep, its that shocking!  If anyone ever gives you shade on "how much you are costing", pay no attention.)

Also there is the irony of that living with HIV is so manageable these days, especially for people like you.  But manageability depends on the ability to finance treatment. 

So, really, thats a big challenge going forward. The most important, in some ways.   Will it be Affordable Care that finally gives solutions for you.  Or ADAP.  Or making do with whatever insurance you have and taking advantage of co-pay coverage that the drug makers themselves offer.  There are anxiety creating challenges so find someone in the know to start walking you through it.
 
« Last Edit: September 27, 2012, 12:39:18 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline vertigo

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Re: Another newbie
« Reply #14 on: September 28, 2012, 02:29:35 AM »
Well, you've started me thinking about looking for an ASO.  I know there are a few around.  Could be helpful to be talking to someone other than my doctor, particularly about the insurance/payment issues.

Treatment costs are crazy high, no doubt about it.  But a huge, huge saving grace this summer when the Supreme Court upheld the Affordable Care Act (Obamacare).  Prior to that my insurance had a lifetime cap of $50K on STD treatments.  Now the cap is gone.  So that's just a massive relief right there.  Thank you John Roberts!

Interesting you bring up the guilt issue.  About a month into all this I resolved to stop beating myself up over it.  Turns out I'm just another flawed human on a planet full of them.  So am feeling fairly unemotional about it all at the moment.  Really just another problem to be managed.  (Caveat -- this could change if my health declines.)

Thanks for writing. 

Offline vertigo

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Re: Another newbie
« Reply #15 on: January 18, 2013, 01:25:23 PM »
Hi Everyone,

A quick update for the new year.

Just got new labs back:  VL 99,460  CD4 530 / 21%

Physically am still feeling great, but I can see from the trend line that the virus is slowly winning, surprise surprise.  Am planning on starting meds a little later this year.

Some good news from my doc: he told me not to stress about the limited selection on my insurance carrier's preferred drug list.  Said they will have to make available whatever he prescribes.  That's not to say that the pricing and co-pay schedule will be the same for all meds, however.

Emotionally I feel fine at this point.  It's remarkable how quickly we can adapt to changed circumstances -- good or bad.  That might be of some comfort to others who find these boards after a new diagnosis.

Cheers. 


Offline tednlou2

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Re: Another newbie
« Reply #16 on: January 19, 2013, 04:00:54 AM »
It's been about 7 months since infection?  I suppose if your body was going to get better control of the virus, you would be seeing it by now.  Most of us don't know when we were infected exactly and didn't get dx'd for several years after, so I always wonder what my labs would have shown during the 7 years from infection to diagnosis.

Anyway, all the best to you.   

 


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