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Author Topic: My experience in Los Angeles (if you need recommendations)  (Read 5916 times)

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Offline robo49

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My experience in Los Angeles (if you need recommendations)
« on: February 02, 2016, 10:40:16 pm »
If, like me, you juste tested positive a few days ago, and went through all the emotions, and are now freaking out about insurance bs and how to pay for your meds, I'm here to tell you, it wasn't that bad.
Maybe it helped that I was in LA, and that I went to a really great and knowledgeable medical group that has been treating patients with hiv since the beginning of the epidemic.

- Tested negative on November 25th 2015. (not sure when I was seroconverted, I think 2 weeks before that, when I tested positive for the damn syphilis)
- Tested positive on January 20th 2016. (fuck!)
- Taking Truvada+Tivicay since today February 2nd 2016. (my strategy was to get on it asap)

All that my insurance didn't cover, Gilead and Viiv payment assistance programs covered -- so it was $0.00 to get the meds.

So far my experience has been, of course, a blow, to learn the news, but, the care and knowledge of the doctors and medical group and the fact that's entirely paid for, made the transition easier and less stressful.
If, like me, you're in Los Angeles, and have a private insurance, and need help figuring this out or a referral to that doc and medical group (it's in Beverly Hills), feel free to ask. I'd love to help.

Good luck.
--

Offline TheNormalLife

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Re: My experience in Los Angeles (if you need recommendations)
« Reply #1 on: February 03, 2016, 12:32:07 pm »
Welcome to the forums robo49! :D

Let me tell you something, you will go far! That strategy of yours about getting on your meds ASAP was a smart one and already being able to help others in your area will make you feel so much better.

I hope to read a lot from you!

Ray from Mx.
09/14 Conversion
12/14 Diagnosed
12/14 CD4-6; VL-4245 (wrong CD4 test)
01/15 CD4-530 (pheeew)
01/15 CD4-755
03/15 CD4-545; VL-14401
04/15 CD4-623; VL-4531
04/15 Truvada/Efavirenz
07/15 CD4-595; VL-UD
08/15 CD4-763; VL-UD
11/15 CD4-581; VL-UD
03/16 CD4-523; VL-UD
07/16 CD4-655; VL-UD
09/16 CD4-820; VL-UD
03/17 CD4-544; VL-UD
03/17 CD4-669; VL-UD

Offline robo49

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Re: My experience in Los Angeles (if you need recommendations)
« Reply #2 on: February 03, 2016, 05:13:33 pm »
Thx Ray!

Not that it matters but my test that turned positive wasn't on the 20th, but on the 30th of Jan. I got on the meds on Feb 2nd -- in other words, 3 days after finding out that I was positive.
That was the whole point of my story, I didn't wait, I got on it right away, on the recommendations of two doctors, one of which is a dear friend and a doctor in infectious diseases -- for them it was a no brainer.

Just sharing...

Cheers
Roman
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Offline robo49

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Re: My experience in Los Angeles (if you need recommendations)
« Reply #3 on: February 04, 2016, 12:03:42 pm »
CD4: 790
yay.
--

Offline robo49

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Re: My experience in Los Angeles (if you need recommendations)
« Reply #4 on: February 08, 2016, 10:09:03 pm »
VL result came back with 10 million copies. That's frightening.
Does that mean it will take a lot more time for me to reduce the viral load to an undetectable level? I have been on ARV for a week, I feel absolutely fine. Getting blood drawn in a week and a half again for another VL test...
Thought on that 10 millions copies result?
--

Offline CaveyUK

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Re: My experience in Los Angeles (if you need recommendations)
« Reply #5 on: February 09, 2016, 10:45:40 am »
VL result came back with 10 million copies. That's frightening.
Does that mean it will take a lot more time for me to reduce the viral load to an undetectable level? I have been on ARV for a week, I feel absolutely fine. Getting blood drawn in a week and a half again for another VL test...
Thought on that 10 millions copies result?

It's pretty high but I wouldn't stress about it - just let the meds do their thang

You are taking Tivicay, which is an integrase inhibitor and these are known for being a class of drug that very rapidly reduces the VL.

I've just had blood taken for my first set of numbers post starting meds, and I'm on the same combo as you. Although my VL is much lower (not low, as such) at 70k, the nurse did say that they are not bothered what the VL numbers are as long as they are heading in the right direction, most people get undetectable within 3 months but they only start really worrying if you are not UD in 6 months. So there is plenty of time.

I am surprised they are doing another VL test so soon though - perhaps it's because it's so high? Over here in the UK, they retest cd4/vl after 4weeks of meds, with a 'safety' blood test after 2 weeks just to check liver and kidney functions (which they also do at 4 weeks)
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Offline Jim Allen

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Re: My experience in Los Angeles (if you need recommendations)
« Reply #6 on: February 09, 2016, 12:41:09 pm »
VL result came back with 10 million copies. That's frightening.
Does that mean it will take a lot more time for me to reduce the viral load to an undetectable level? I have been on ARV for a week, I feel absolutely fine. Getting blood drawn in a week and a half again for another VL test...
Thought on that 10 millions copies result?

I glad to hear your feeling fine, and have started treatment, as for the high VL I would not worry too much at this stage. Just see this as your starting point and your goal is now to take your meds as directed. Some people will reach a lower VL quicker than others but don't worry / stress too much about that simply focus on taking your meds and working with your doctor. At the end of the day we are all different.

I am surprised they are doing another VL test so soon though - perhaps it's because it's so high? Over here in the UK, they retest cd4/vl after 4weeks of meds, with a 'safety' blood test after 2 weeks just to check liver and kidney functions (which they also do at 4 weeks)

I had my blood taken weekly and then Bi-weekly and I was fine, high VL was not directly the reason. In the NHS there is no set or universal treatment plan for HIV but instead it all depends on a number of factors, including reaching KPI's given to the units.

Jim.
« Last Edit: February 09, 2016, 12:43:38 pm by JimDublin »
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Offline CaveyUK

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Re: My experience in Los Angeles (if you need recommendations)
« Reply #7 on: February 09, 2016, 01:26:45 pm »
In the NHS there is no set or universal treatment plan for HIV but instead it all depends on a number of factors, including reaching KPI's given to the units.

There are the BHIVA guidelines, which my NHS clinic certainly follows. I'm not trying to be clever mind you - the only reason I'm aware of this, in the context of VL test frequency, is that I was walked through the actual guideline's this morning at my clinic visit as I questioned whether cd4/vl counts could be 'on-demand', and they pointed out the 4-week from ART start guideline, along with the frequency guidelines beyond this. The only thing they did say was that the latest guidelines indicate only annual cd4 counts however was told that if I wanted them in the interim they could do them (although it doesn't apply to me yet as my cd4's are so low).

I guess there is nothing stopping individual clinics performing more regular checks though, as they are only 'guidelines'.
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Offline Jim Allen

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Re: My experience in Los Angeles (if you need recommendations)
« Reply #8 on: February 09, 2016, 01:35:58 pm »
You not clever minding me. BHIVA guidelines are simply guidelines and not the only aspect taken into account and hence treatment varies in the UK from clinc to clinc - patient to patient. Let alone outside the UK.
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Offline robo49

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Re: My experience in Los Angeles (if you need recommendations)
« Reply #9 on: February 09, 2016, 10:52:30 pm »
I don't know if it's a side effect from Truvada or Tivicay or the impact of the diagnosis or all of it combined, but i have been feeling depressed and psychologically exhausted since yesterday. Normal things feel impossible to accomplish and make me want to cry and I want to sleep and talk to no one. I also had a case of insomnia last night, which is weird, I have NEVER had an issue with sleep before.
I bet it's the psychological drain from the life adjustments and realization that's happening...
I'm sure y'all been through that at some point.

Ugh.
« Last Edit: February 09, 2016, 10:55:04 pm by robo49 »
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Offline Jim Allen

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Re: My experience in Los Angeles (if you need recommendations)
« Reply #10 on: February 10, 2016, 01:48:02 am »
Hi Roman,

You were only recently were diagnosed and it seems to me your still digesting this, so a few up's and down's would be perfectly understandable. I did not sleep correctly for at least a week following my own diagnosis, but it all worked out fine. I can say from reading and talking to people i think the news of diagnosis affects us all differently at first, allow yourself the time to digest it.
Also keep in mind we are here and to keep us posted.

As for side affects, if any it should settle down after a few weeks, just focus on taking your meds. Next time you speak to your doctor make sure to also let him/her know how you are doing. 

Take it easy.

Jim.

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Offline robo49

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Re: My experience in Los Angeles (if you need recommendations)
« Reply #11 on: February 10, 2016, 12:53:38 pm »
thanks jim,
appreciate it.
--

Offline robo49

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Re: My experience in Los Angeles (if you need recommendations)
« Reply #12 on: March 01, 2016, 04:09:36 am »
When I thought I was over the bump :
While on vacation, last week, on the other side of the world (I was trying to distract my self and the boyfriend from my initial hiv diagnosis that was quite a blow) I got a call from my doc who said initial screening for HEP C came back positive. Great!!! All I felt was "please, give me a fucking break already..."
So tomorrow will get more blood drawn to confirm if hep c is indeed in my body. I guess new drugs were approved very recently that have very good cure rate. I suppose I'm lucky to only get it now?!. Hmm.
I guess the only good news today is that after 20 days of ARV my hiv viral load is already way down (from >10M to 1000 copies), and we hope that now it is actually undetectable (30 days), results next week.
Feeling healthy though, but who knows, I guess you never really know what's happening inside your body.
Cheers.
--

Offline Jeff G

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Re: My experience in Los Angeles (if you need recommendations)
« Reply #13 on: March 01, 2016, 09:49:47 am »
When I thought I was over the bump :
While on vacation, last week, on the other side of the world (I was trying to distract my self and the boyfriend from my initial hiv diagnosis that was quite a blow) I got a call from my doc who said initial screening for HEP C came back positive. Great!!! All I felt was "please, give me a fucking break already..."
So tomorrow will get more blood drawn to confirm if hep c is indeed in my body. I guess new drugs were approved very recently that have very good cure rate. I suppose I'm lucky to only get it now?!. Hmm.
I guess the only good news today is that after 20 days of ARV my hiv viral load is already way down (from >10M to 1000 copies), and we hope that now it is actually undetectable (30 days), results next week.
Feeling healthy though, but who knows, I guess you never really know what's happening inside your body.
Cheers.

The good news is that there is a very tolerable and effective treatment for Hep C now . POZ has a Hep C forum as well so you can go here and get the information and support you need. http://www.hepmag.com/
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