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Author Topic: Advice please  (Read 2999 times)

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Offline h3lpm3

  • Member
  • Posts: 10
Advice please
« on: February 02, 2012, 05:31:07 PM »
I just tested Positive. My wife tested negative but we must wait for 3 months for her to test again to be sure. I have had my meeting with the person the health department sends around. He was saying something about how good the health department was vs. a private physician. I have good insurance. What would everyone suggest? I am a total noob when it comes to this and have been reading as much as I can along with trying to absorb what just happened.

I would also like the low down on medications. I do not smoke drink occasionally and dont do drugs of anytype. Is there any reason I wouldnt start on meds right away? I understand that once you are on them you stay on them. Are they really hard to take? Am I going to be crazy sick? Am I crazy in asking this question? It seems like a no brainer to start and stay on the meds. Am I missing something?

Thank you, I appreciate the input.

Offline tealeaf

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  • Posts: 39
Re: Advice please
« Reply #1 on: February 02, 2012, 07:30:06 PM »
Welcome to the forum.

I was in your position less than 2 months ago so I understand what you might be going through. Upon tested positive, my primary care doctor referred me to an Infectious Diseases doctor (ID). The ID ordered me blood test for viral load (VL), CD4 count and liver+kidney functions. I asked him to order another set of the same tests 2 weeks later so I could have a sense of how the virus progressed.

So depend on your CD4 and VL numbers, ID doc can talk to you about starting the treatment. My CD4 was in the 360+ range which is border line recommended treatment threshold (below 350). So I decided to start the treatment as soon as possible. Given 2 options of one a day pill, Atripla and Complera, I went with Complera because it's newer drug approved in 2011 with less side effects. Your ID doc could totally give you different drug combos depending on your health history.

Keep in mind that the majority of people have no side effects whatsoever and short term side effects gone away in a matter of weeks. I've been on Complera for a month now and I have no side effects except for dizziness and mild headache the first week. ID doc is monitoring for any possible long term side effect (kidney, liver, etc.) by doing regular blood work (every 4 months)

So it's totally manageable when you know what your numbers are and having a good ID doctor.

You're not alone! We have gone through it and a lot of people who were diagnosed back in 1985 continue to thrive and have undetected VL.

Good luck and wish you well,


« Last Edit: February 02, 2012, 07:40:05 PM by tealeaf »
12/05/2011 - tested positive
12/14/2011 - CD4 376 (18%) - VL 45734
12/28/2011 - CD4 367 (17%) - VL 27000
01/05/2012 - started Complera
02/08/2012 - CD4 521 (31%) - VL 226
04/05/2012 - CD4 453 (22%) - VL 44

Offline h3lpm3

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  • Posts: 10
Re: Advice please
« Reply #2 on: February 02, 2012, 08:16:10 PM »
I appreciate the support, it seems like a very tight nit community.
I have no problems in my medical history besides eating too much junk food and being about 30lbs overweight.

I believe that I have gotten this in the past 90-120days. How fast can it take ahold if I was somewhat healthy? (I am just looking for ballpark, I know without tests there is no way to be accurate)

Is there a good website that talks meds and gives percentages of those that experience side effects. From the sounds of it there are many people that have this thing under control. What is the common denominator in those people? (Driven, educated, or just general condition and routine)

You mention having a good ID doc. What is the best way to find that out. The health department assigns a "caseworker" and has "nurse practitioners" who report to the Doctor on file. Or I can go the route of private... (any suggestions?)

Like I said I do appreciated any info that can be given. I am trying to flatten the learning curve.


Offline mecch

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  • Posts: 13,406
  • red pill? or blue pill?
Re: Advice please
« Reply #3 on: February 02, 2012, 10:01:34 PM »
How fast can it take ahold if I was somewhat healthy? (I am just looking for ballpark, I know without tests there is no way to be accurate)

Take ahold?  You mean how fast will you get AIDS?  It's all about you, my dear. There is no general ballpark. You just need your numbers and doctors advice -- you can't guess your own body's ability to deal.

Also, if you are reading about HIV and treatment, then you are learning there are two main areas that determine a person's time for HAART. The most important is the body's need for it.  That you find out with your labs. And maybe over time. Maybe not.

Second, a person needs to have the living situation to support the long-term if not lifetime treatment.

You seem to be hinting that you want to start HAART as a choice, not necessarily as a necessity. There are people who do that, yes. 

Nobody can answer your questions because you haven't provided the information.

What are your labs.

And can you afford HAART.

And is being on HAART something that will give benefits other than your health. Maybe it would be good for your couple if you are undetectable. Maybe you want to have children. etc. etc.

Besides going undetectable, what are the other benefits to being on HAART for you, right away?  Most people decide to wait until the body needs it. But there are certainly plenty of people who OPT for HAART when it serves their purposes.  Keep in mind, not everywhere in the world is everyone given the chance to decide when.  (And of course many in the world still never get HAART.)  Are you SURE you can have HAART when you personally decide, not when it is medically necessary?? Check.

All these questions will be answered as more information becomes clear.

Welcome to the forums.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline h3lpm3

  • Member
  • Posts: 10
Re: Advice please
« Reply #4 on: February 03, 2012, 06:09:45 AM »
I understand about the labs and I am getting them as quickly as possible.

Is HAART no readily available? I live in Florida.

You ask if I can afford HAART. What kind of money are we talking here? I know there will be a cost but will it be $1000 a month, $2000? I just dont know what to expect. I will get my labs ASAP and try and give more information.

Thanks you.

Offline mecch

  • Member
  • Posts: 13,406
  • red pill? or blue pill?
Re: Advice please
« Reply #5 on: February 03, 2012, 07:56:16 AM »
How do you pay for your health care now and in the future? Private individual insurance? Employee provided?  You said you have "good insurance" so I'll give you some basics but other members here can do this better than me.

I am not the best person to answer these questions, I am American and live in Europe.  I wonder if providing information that does not apply to your situation will stress you out? 

Very few Americans are paying the retail price of HAART.  The price of HAART per month has a huge range, depending on what drugs one takes. 1000 - 3000 might be a ballpark retail price.   People are paying what their deductible and drug co-pays on their insurance demands.  Some people have small costs, others find it difficult to afford on their insurance plans.  If there are high co-pays, some of the drug manufacturers can help with the copay. Some of this copay assistance does not last forever.

So it all depends on your individual insurance, the HAART you eventually get prescribed, and what you find affordable on your budget and income.

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

Offline Assurbanipal

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  • Posts: 2,175
  • Taking a forums break, still see PM's
Re: Advice please
« Reply #6 on: February 03, 2012, 09:39:14 AM »
If you have decent health insurance, HAART is readily available in the US.

As a ballpark estimate, for someone starting on HAART it costs the drug company somewhere between $15,000 to $20,000 per year.  How much of that you pay in deductibles and co-payments depends on the terms of your insurance.  Many plans have a website these days where you can figure out what things will cost you personally.  For those plans that don't have this type of tool available, there should be a summary plan description (SPD) available to you.  The SPD will tell you how the plan works, so you can figure out what your payments would be.

Some caveats
 - Most people with health insurance have "decent" health insurance that will make a significant contribution to your healthcare costs.  But a few million people have really bad insurance that pays next to nothing towards drug coverage.  Before you decide on a path, you should read your health insurance SPD to make sure you have decent coverage.  The larger your employer and/or the higher its average wages, the more likely you are to have decent or even generous health insurance.
 - Few people have the option of public coverage vs. using their health plan these days.  With the budget crunch due to the recession, most public plans will want you to use your health insurance to pay for benefits whenever possible. Perhaps what you were being offered was the oppotunity to use your health insurance in a variety of settings, including to purchase services at the public clinic.

As far as how to choose a doctor, in medicine the general rule of thumb is that you want a doctor who sees a lot of patients with your condition.  Studies have repeatedly shown this for many types of care (if you need a heart bypass -- don't go to a boutique, they have much higher death rates than a mill where you are patient number 3000).  HIV is no exception.  The trade-off with the public clinic is that it may take a lot longer to get an appointment and you may get less individualized attention. 

HIV clinics may also provide better coordination of care if you have complications -- but this is more of an issue for people who didn't start HAART until after they had already had some serious illnesses, than for people who are starting soon after infection.

Your insurance may have certain providers that it prefers.  But make sure you have access to someone who sees other HIV patients on a routine basis.

Finally, as someone who is just learning about all this it can all be complicated and sometimes frightening.  In addition to the forums, the site has a well laid out set of lessons.  If you haven't yet found them they may be very helpful to you.
A link is here http://www.aidsmeds.com/articles/Introduction_4702.shtml

Welcome to the forums
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%
2014 VL UD - 48
2015 VL 130 Moved to Triumeq

Offline h3lpm3

  • Member
  • Posts: 10
Re: Advice please
« Reply #7 on: February 03, 2012, 09:59:35 AM »
Thank you so much everyone, I have started looking at my insurance more and more and it seems that I have a cap of $50 per medication per month. I have been refereed to a specialist and am going to begin with asking how many patients they see with the same condition.
I can not thank you all enough for starting me on my way.


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