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HIV Health and Treatment Issues >> Treatment & Side Effects

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pogi12
Newbie

Reged: 11/26/11
Posts: 1
How long were you poz before you started treatment
      #259185 - 11/26/11 03:09 PM

Hello,

First of all I would like to say thank you to anyone taking the time to read this and any responses would be much, much appreciated.

I was recently diagnosed HIV positive within the last year. I don't know what my T-cell counts are or my viral load; the place I was tested only tested you for the virus. I was given information for a clinic, but I suppose I haven't gone yet out of a mixture of fear and embarrassment, if I'm being honest. But my BIG worry is how I'm going to afford the reality of being positive.

Basically, I work at a restaurant with no health insurance, and I'm up to my ears in student loan debt (ha - skip college if you don't have a solid, future-proof plan). Living day-to-day is where most of my finances are allocated these days, and the worry over how I'm going to afford treatment keeps me up at night more than the fact that I'm HIV positive.

My question for some is how long did any of you go without treatment? How long can a person expect to go without treatment before things become even more complicated? I don't ask this so that I know how much time I have to play around before I get serious. But I really need to prepare my life for this reality - improve my finances, possibly get insurance, tell my roommates, reconcile with family members. Because, as of right now, I'm absolutely unprepared for dealing with this, and I'm not talking emotionally here. I almost feel like emotions are the easy part.

How much time do I have?

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kicker
Moderator

Reged: 10/25/10
Posts: 1016
Loc: GA, USA
Re: How long were you poz before you started treatment new
      #259206 - 11/28/11 01:59 PM

Although I can understand your hesitation for not going to see a doctor, it is rather foolish and could prove to be life threatening in the long run. If you don't know where your numbers are then you have no way of preventing illness or worse death. Put aside your fears, do what ever you must to get prepared to go, bring a friend, bring a loved one, ask the local AIDS service organization if there are mentors that are available to go with you, just go.

Since we have no idea when you were infected or even your numbers, I will give you a broad answer as to when to start and how long you have. As far as how long, if you were infected yesterday, 5-10 years before it becomes AIDS. Which btw you do not want and there is no reason today to not prevent that. As far as when to start it is recommended that people start treatment when their cd4 drops below 500, and required to start when it drops below 300.

As far as no health insurance. There are many many many programs out there that will help you pay most if not all your medical bills pertaining to HIV based on your current income. Yes the paperwork is a pain in the ass, but well worth the time. So you can't use having no insurance as an excuse.

As far as how long people go without treatment without it getting complicated....well again 5-10 years, but you do not want to even try to see how long you can go, because chances are when you realize that it's "complicated" it will be way to late. Again not knowing when you were infected or what your levels are you could have days, weeks, months, years, before then, but who knows, certainly not you.

I think your big question should be, "How can you afford the reality of denying you are positive and avoiding treatment if you need meds now or don't?"



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bartlebyAdministrator
Admin

Reged: 01/19/10
Posts: 660
Re: How long were you poz before you started treatment new
      #259238 - 11/29/11 03:52 PM

more and more studies are showing that it's better to start treatment early. the consequences of waiting is different for everybody, depending on their immune system, health, diet, genes, etc.

it's scary, but you should go to a local HIV organization, http://www.thebody.com/index/hotlines/other.html, and ask for help! they should be able to help link you to care! good luck.

--------------------
Bartleby at The Body
Bulletin Board Administrator

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vbd1966
Regular

Reged: 05/20/10
Posts: 39
Re: How long were you poz before you started treatment new
      #259493 - 12/16/11 08:31 AM

Hi, I agree with Kicker. Not seeking medical attention is the worst thing you can do. Do you even know when you became poz?

For me, I narrowed it down to late Sept/early Oct 2009. I was diagnosed in Feb 2010, went through a few cycles of labs and, while the numbers were OK medically, I had a problem with them so I decided to begin Atripla in September 2010 -- about a year after exposure and infection. By December, my VL was undetectable and the ID told me I had the typical life expectancy of an average (overweight, former smoker, sometime drinker) person of my age.

I was extremely fortunate, and remain so, that I managed to find a good job with benefits before I was diagnosed. The county in which I used to live was still wanting me to go through ADAP, but I didn't want to take resources from someone who was not as fortunate as I. The point here is there are resources out there that can help, and I've read many posts here and Bartleby has also provided a link to resources.

I would suggest you take control of your life and your health. I'd also look for a job with health insurance (surely those student loans resulted in a degree).

Best wishes to you as you move forward.

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riverprincessModerator
Moderator

Reged: 12/25/11
Posts: 1662
Loc: Jersey Shore
Re: How long were you poz before you started treatment new
      #259671 - 12/29/11 12:17 PM

I knew I was positive long before it became "official" with a test. My life was such a mess with drugs at that time that seeking treatment wasn't my issue. That was over 20 years ago. And even after I go clean I hesitated going on meds because at that time there was only AZT and that was killing more friends than helping them. And I spent some time incarcerated and I wasn't trusting their form, if any, treatment. So I waited about 5 years , by then I had an oportunistic that put me in hospital. And my t-cells were in single digit. I was so unsure of the meds, but my dr at the health dept told me if I didn' like it after trying I could always stop. Having that option helped me decide. Well I've been on meds now for over 15 years. As for the insurance there are many avenues to get help from . Find the social workerker in your health dept or seek the internet. I had no insurance but was still able to get meds. Now my hubby , same story, has never had to be on meds. He is with the elite controller group. So you see only you can really decide for yourself. Don't be afraid for it really is not a big deal. I know of other illnesses that are much worse. This is managable and life can still abound .

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Pos_in_Thailand
Guardian

Reged: 02/01/11
Posts: 464
Loc: Thailand
Re: How long were you poz before you started treatment new
      #259796 - 01/03/12 10:18 AM

Hi!

I really feel for you.... Being positive myself and on meds, I have looked at the cost of the meds in the US and have pretty much given up ever being able to live at home again. The meds that cost most people about $2000 a month over there, we get here for $100 per month, per person. They are the same meds from the same factories, in the same bottles, same QC, everything. We get them (Truvada + Stocrin = "Atripla") through the Thai Red Cross. We also get our labs done there, as well as had our genotyping and sensitivity testing done there before starting treatment. Labs with CBC, VL, CD4 count, ratio and percentage are about $66. The genotyping + sensitivity testing for all categories of meds was about $300. This is all done on equipment that is from the US, maintained by the US Red Cross. The QC is the same as any reputable US hospital. I honestly do not know what I would do if I wanted to go back to the US....

I was positive about 11 months before being diagnosed. I was 13 months positive before starting meds. My GF had apparently been positive for years and didn't know it. She was in AIDS when diagnosed and is doing well now, thanks to the medications.

Do try to get yourself treated sooner, rather than later. I know that's easier said than done, but the research is showing that earlier treatment is much better in the long-run.

Please PM me if you want to talk or have any questions. I'm always happy to share. Our thoughts are with you!



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sunman
Newbie

Reged: 08/31/10
Posts: 2
Loc: New Mexico
Re: How long were you poz before you started treatment new
      #259925 - 01/06/12 11:45 AM

As others have said. waiting is a terrible option. I know you have debt, etc., but there may be help available.
Contact your local ASO (AIDS Service Organization) to see what is avaiklable.
I was a very lucky pozzie. I tested positive in 1985, and there were no meds. They told me I had two years to live.
I'm still here, and I was lucky that I managed to not need meds until 1996, but that was sheer luck and probably some good genes.
But, through at least a good part of that time between diagnosis and starting meds, I did monitor my health, saw a doctor regularly, had labs done regularly, etc.
I cannot stress how important it is for you to get on top of your health care.
Please consider seeking services.

Peace

--------------------
Positive for 25+ years and still kicking

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AIDS2HIV
Legend

Reged: 12/19/05
Posts: 2200
Re: How long were you poz before you started treatment new
      #259928 - 01/06/12 12:21 PM

just want to share some personal knowledge & experience with you..

2 weeks after one is infected, the virus has been proven to break through the protective barriers of your spinal cord, from their it begins its work attacking cells in your central nervous system & your brain. Keeping in mind the virus turns them cells into replicating "factories" generating thousands of replications at a time, the longer ya wait to seek treatment of any kind including being monitored by a specialist, the more damage it will do to you. This virus doesnt care about your debts, your current schedule,etc...

personally I Unknowingly had hiv/aids. How did i find out?... I went in for a fever that i couldnt seem to get over. after many tests, not only did i learn i was poz, i learned i was in the latest stages of AIDS. 3-4 days later i slipped into what many term "the death coma"...it's not often one survives it. But by the grace of God, after 4 months of it, i came out of it...BUT NOT WITHOUT COMPLICATIONS. Most of the complications could have been avoided had i been diagnosed & treated earlier on.

Yes, Im still above ground, but I now deal with things like: a constant battle with aids related waisting syndrome, aids related dementia, seizures, neuropathy, low pressure glaucoma, folic acid deficiency, meds resistance, and the list goes on.... I no longer have brain functions, such as... hunger pains, memory accuracy, sorting/composing/recall, the early warning system that your body has that says " hey find a bathroom you need to go soon", anger management, anxiety control, detachment from emotions & reality, etc....

is that what YOU want for yourself? if so, I'd gladly trade ya*.... because I'd give anything to have what many here have, yet take for granted.

--------------------
Thinking about meeting someone from this site? Read my profile before you do.

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alive2
Guardian

Reged: 03/08/07
Posts: 342
Re: How long were you poz before you started treatment new
      #260093 - 01/13/12 02:26 AM

dont look at this as how long do i have, look at it as how much time your wasting. the longer you wait for treatment and taking medications, the faster the virus will replicate in your body, and in doing this, it will take a toll on your body mind and spirit.
for anyone to think about the cost of care isnt good, its the quality of life that comes into the equation. the longer you wait the chances of damage done sometimes cannot be undone.
you have a worry about costs? ask yourself this, do i want to save money? or do i want to be as healthy as i can? the money you save wont come without hiden risks, or added costs.
i hope you waste no time, its something many would love to have more of but cant because they too wasted time getting treatment.
and costs shouldnt deter you, there are many ways to help with costs, adap, state programs, pharmacutical companies too. i sugjest you wait no longer. good luck

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jesuisphoenix21
Newbie

Reged: 01/15/12
Posts: 3
Loc: CA, USA
Re: How long were you poz before you started treatment new
      #260217 - 01/16/12 03:49 AM

I will agree with all previous replies...the sooner you start treatment the better it will be in the long run. I was diagnosed March 10, 2010, a week later had my first blood work report, CD4 was 325 and VL was around 1,000. My virus didn't show any med resistance, so my DR. suggested starting meds right away. Two weeks after being diagnosed I started treatment, a month later VL was undetectable 20, CD4 was and still is around 315-324. In July 2011, I lost my ADAP and basically stopped treatment, still go to the county clinic for check ups and so far still undectable. I think if I would have waitied to start treatment I would not be this healthy.

--------------------
‎"The time is right for the Phoenix to rise from the ashes."

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Pos_in_Thailand
Guardian

Reged: 02/01/11
Posts: 464
Loc: Thailand
Re: How long were you poz before you started treatment new
      #260225 - 01/16/12 08:29 AM

That's terrible that you had to go off meds! What happened?

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vripley
Member

Reged: 01/22/12
Posts: 13
Loc: Maryland
Re: How long were you poz before you started treatment new
      #260517 - 01/23/12 11:24 AM

Hiya Pogi,

When I was diagnosed there weren't really any medications available, so I started out for the first two years without any meds, simply because I had to. Then, the early meds were tough on me and I would vomit them up, so I stopped taking them. I think I was without meds for the first three or even four years before I started.

That said, I also got pneumonia, shingles, and tons of sicknesses during that time of no meds and low CD4 count.

I'm not sure how low my CD4's got, but I know they were below 200 for a bit in the late 80's. I've been battling HIV for 25+ years now and my viral load is undetectable, my CD4 count is currently over 700, and I am in the best shape of my life.

If I was you, I would do everything I can to get meds. But, remember that the meds are not the only thing to help you survive. IMHO - it takes a balance of things. Checkout my blog post about this here:
http://hivlongevity.com/2012/01/16/how-to-live-longer

Good luck, and please keep us posted!

-Vaughn

--------------------
hivlongevity.com
www.vaughnripley.com

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Pos_in_Thailand
Guardian

Reged: 02/01/11
Posts: 464
Loc: Thailand
Re: How long were you poz before you started treatment new
      #260539 - 01/24/12 05:15 AM

I strongly agree! I have only been going on this for a year now, but I am very thankful I got on the meds immediately, and thankful that the newer ones are as good as they are.

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