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Author Topic: I've been reading comments for 2 days, finally ready to post my own and get help  (Read 3930 times)

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Offline overthemoon

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  • Posts: 9
I don't know where to begin, so I'll just say that on March 23rd I tested positive. I was out of the country. I went to a foreign hospital (alone) after having been very sick for one week. I am pretty sure this was the acute infection (and that I was infected about a month prior (so nearly 2 months ago now). I'm in my mid 20s, and I came home to my family April 1st. I have been at home since then. I still have not been to the Dr. and I still have not talked to anyone about this. I know that I need to do both of these things as soon as possible. My family lives a few hours from New York, so I am planning on going into the city to somewhere that can point me on the right path. Now that I've given a little background I guess I have a few questions.
Any suggestions of where to go in New York City to get help? I do not have insurance, and I have been a low-income wage earner outside of the US for a few years now. How hard will it be for me to get the tests I need done quickly in New York? I plan on being back here for good now and getting a decent job in NYC with insurance, but while I sort things out, do I have any hope of getting good treatment without insurance, and quickly? Or will I have to wait for months and months?

I can't bring myself to tell my family yet, because I know it will kill them. I know they would be able to help me, but they have health concerns of their own, and I am so scared of how they will see me after this...
I finally got to the point where I was panicking this morning. In fact everyday so far, the morning is the worst, I have ups and downs throughout the day (depending on what I allow my brain to focus on) and by the evening I am usually feeling in my best spirits, maybe because I am just so worn out by that point.

For those of you who have been dealing with this for some time now - will I ever be able to stop my brain from turning around and around on this and stop the regret, sadness and fear? I know it is a lot to ask before I have even seen a Dr., but I am desperately hoping to find some comfort here.

For those of you on medication, do you feel like you can lead a relatively normal life? Is it possible (barring a resistant strain) to be on Atripla, or one of the new drugs for decades do you think without any horrible side-effects, body changes, etc.? Is it really true that you can live into your 70s?

I know this marks the end of life as I knew it, but if anyone has any encouraging words about their own 'new' lives, or life that is possible after this diagnosis, I would really appreciate them. Will this be a downhill struggle, or can I hope for many healthy, happy years? And finally, how happy are you now? And if you would now consider yourself happy, how long did it take for you to get there - weeks, months, years?

Thank you so much for your help, this forum has already provided me with a great deal of comfort, and I hope to find more, as I am right now, desperately in need of it.
Aaron




Offline WillyWump

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  • your ramblings bore Yamaguchi Kitteh
Hey Aaron,

Welcome, I'm glad you are here, but sorry there is a need for you to be.

I've been poz for 3 years, been on meds for 2. My life is just as normal now as it was pre HIV. Sure there are the doctors appts every 3 months, and the meds I take every day, and I ahve to live a bit healthier now (which in my case is a good thing). But I am still living my life and enjoying my "new life" as you call it. As far as being happy, I am just as happy now as I was pre HIV.

It was a bit diificult wrapping my head around my diagnosis in the beginning, but I can tell you that all the anxiety passes. I promise you that you will live a normal life. You will get to the point where HIV is just something you live with, and nothing more. Remember, you have HIV it doesn't have you. You will have friends, you will have relationships and you will have a life!

Something that helped me alot was to learn everything I could about the virus, and a good place to learn that is right here on AIDSmeds. If you havent yet click through the links at the top of the page, there is a wealth of information there. There is also alot of first hand information available here in the forums, pull up a chair and read thorugh them, you will learn alot.

As far as your family, chill out a bit and relax, there is no need in rushing out and telling them immediately or stressing over the fact that you are not ready to do so yet. But it's nice to ahve someone to talk to, do you ahve a friend you can confide into? If not don't worry, this is a nce place to share your feelings. I would recommend seeking out your local ASO (Aids Services Organization) and gathering info about what they offer, also set an appt to speak to a case manager there, they can get you hooked up with assistance and direct you to a doctor. I'm not familiar with what NY offers so I will defer that to someone else here who may know more.

Chances are you will be put on Atripla once the time comes to start meds. There are people who have been on Atripla for many years with no problems. Theoretically, if you are adherent in taking your meds (whatever they may be) you can stay on them indefinitely. If something arises and you have to switch regimins at some point down the road, there are many options to choose from. Todays meds for the most part are not associated with horrible body changes, that is pretty much connected with the older drugs and those who took them.  

You really need to get into a doctor and get some labs done, etc... to see where you are at in all of this. So why dont you take today and contact an ASO and get that ball rolling. You'll feel better after you do.

So hang in there buddy, chin up, you are going to be jsut fine :)

Hope to see you around the forums!

-Will

« Last Edit: April 13, 2011, 11:34:53 AM by WillyWump »
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline overthemoon

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Will, thank you so much for your quick reply. I am going to contact an ASO today, and will try to get into the city to see them early next week. I hope and pray and hope again that I will be like you and will have a 'normal' life as quickly as you have. At this stage it is really almost impossible for me to imagine being as happy as I was before, but hearing you say that you are now gives me some courage. Thank you again, and I will keep posting here, as I will undoubtedly have more questions and need more help.

Online mecch

  • Member
  • Posts: 11,726
  • red pill? or blue pill?
Hi welcome!

I'll respond to a few, not all, of your points. 

I don't know where to begin, so I'll just say that on March 23rd I tested positive. I was out of the country. I went to a foreign hospital (alone) after having been very sick for one week. I am pretty sure this was the acute infection (and that I was infected about a month prior (so nearly 2 months ago now).
It’s unfortunate you had to go through seroconversion alone!
That said – it is good to know so early in infection, especially since it seems like you want to take control of your health and future.

I still have not talked to anyone about this.
Talk to us here until you are ready to talk to people in your life.
 
My family lives a few hours from New York. …
Any suggestions of where to go in New York City to get help?


I wonder why you insist on NYC.  If you are “a few hours” that means somewhere upstate and many counties and regions have AIDS services. I googled the first big town – Poughkeepsie – and there is an HIV/AIDS service set up and they see and treat undocumented and uninsured people.  The point is, until you get that job in NY, why don’t you just see whats available locally – it would be more convenient and there is always the chance you will be less of a number in a smaller city!

I finally got to the point where I was panicking this morning…. For those of you who have been dealing with this for some time now - will I ever be able to stop my brain from turning around and around on this and stop the regret, sadness and fear?

Yes your reaction – a lot of people have had the same. With time and more information all four things will settle down – rolling thoughts, regret, sadness, fear.  Really.

For those of you on medication, do you feel like you can lead a relatively normal life?
Yes.  Besides being HIV+ is my new "normal".   

Is it possible (barring a resistant strain) to be on Atripla, or one of the new drugs for decades do you think without any horrible side-effects, body changes, etc.? Is it really true that you can live into your 70s?
You are young and diagnosed early.  If you follow medical advice and medical treatment – they are saying pretty normal life span – e.g. – HIV as another health threat but not the straw that breaks the camel’s back so to speak.
Furthermore, as you learn more about treatment, and the history of treatment, you’ll see that today’s HAART – such as Atripla -- probably won’t be the one in 10 years, let alone 20 or 40!   Furthermore, it’s not productive at all to be thinking about side-effects and body changes.

That’s all for now.
Get to a doctor A.S.A.P.  You don’t need some NY miracle doctor, it’s 2011 and a generalist can handle some of the testing and advice you need now.

Also, you’ll want to confirm your diagnosis.  Or is it definitely confirmed abroad?

Also – this forum is completely public so I noticed you signed your name.  Are you sure you want to?  You can edit it off your post, if you would rather stay completely discrete.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline drewm

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  • Posts: 1,112
Welcome to the forums. Sorry you need to be here but glad you found us.  :)

I was diagnosed with AIDS last May. I had never been tested and wound up in the hospital with pneumonia. Long story short, my family knows and they have reacted better than I ever could have imagined. Yes, this disease is frightening but most of the fear is rooted in it's very ugly history and it is not the same disease today as it was 10-20 or 30 years ago. It is manageable and yes, there are a lot of folks who will probably die from old age before the virus has the chance to take us out.

I found that it was important for me to educate myself on as many facets of this as I can so I can ease the fears of those who are clueless about HIV/AIDS but who genuinely care about me. This will be important where family and close friends are concerned.

It's hard, at first, to wrap your brain around all of this as it seems to come so fast but it fades with time and you will begin to manage it instead of having it manage you. Just remember that fear and stress are two allies of this virus, fight them and you are fighting the virus as well.

Willy had some really good points about reading the forums here. You will find a wealth of information!

(((HUGS)))


Drew
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline Ann

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  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Hi OTM, welcome to the forums.

You can try GMHC in NYC - http://www.gmhc.org/

You can also find an ASO a little closer to home by using POZ.com's Health Services Directory. Scroll down to the second section - the first section is only for finding hiv testing centers.

Hang in there - it really does get better in time.
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 coolstone25

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  • Member
  • Posts: 42

Any suggestions of where to go in New York City to get help? I do not have insurance, and I have been a low-income wage earner outside of the US for a few years now. How hard will it be for me to get the tests I need done quickly in New York? I plan on being back here for good now and getting a decent job in NYC with insurance, but while I sort things out, do I have any hope of getting good treatment without insurance, and quickly? Or will I have to wait for months and months?
--> Dear Aaron,
I am in NYC. I could direct you to some good places I know: it's crucial you seek help right away, because there are plenty of resources available in NYC to help you out - whether it's the medical treatment and diagnostics or the support groups and counselling necessary for those who are diagnosed to be newly poz.
You could visit the IDC clinic of St.Vincents Hospital, as a matter of fact, one of them, a great friend of mine, is a really nice understanding cool young doc who specializes in Infectious Diseases and HIV, Dr. Antonio Urbina(he's infact one of the board of advisors of AIDSMEDS or POZ); There's a nurse there, stacey, they should all help you fill out the relevant paperwork and show you the ways to get the tests and the meds (for those who are without insurance and BUT who are residents of NY only), for zero or very low cost(if I know I am not mistaken!); Its located on 12th street between 7th ave. and Greenwich Ave,(NOT GREENWICH ST)... I am not sure if the IDC clinic is still open because St.Vincents Hospital filed for bankruptcy - but i hear they kept some operations running like the comprehensive care clinic for HIV patients  the IDC clinic!) Call Dr. Antonio Urbina: 212-604-2968
Also call: HIV IDC clinic: 212-604-1777
Also call the AIDS hotline: 1 800-624 2377

You may also choose to go to GMHC as Ann pointed out. The counselling they give there is good.

Another good clinic you might want to consider is Callen Lorde on 18th street, close to 9th ave. (but between 8th and 9th ave.)
They help you to fill out papers and get access to some medical help for those who find themselves in meagre circumstances.
212-271-7200

Also of help is the Aaron Diamond Aids research Center.
http://www.adarc.org/

Just get to the IDC Clinic or start calling all these centers and you should get some leads and some counselling and help. They shall call you in.

Let me know if you need some more help.

DO NOT panic. Ann herself, the administrator here, has been without meds since she was diagnosed or seroconverted in 1997(I think) and there are plenty of people who may never need medications because of advantageous genes. Who knows, you might be one of the long term non progressors?

You are going to be alright. Once on meds and with new futuristic therapies being tested, you should live a full life, more like a diabetic.

Warm Greetings and hold your chin up.
if you want you could PM me.


Offline spacebarsux

  • Member
  • Posts: 1,350
  • Survival of the Fittest
Hi sorry to hear about your diagnosis but welcome! I am also in my twenties and like you, I am finding it hard to get my head around so many things. But I can assure you that, just a month from now you will feel better and then a bit better a month from then. Hang in there, and don't rush into disclosing to family unless u feel its necessary. You are the same guy u were before that day, only difference is that u are now poz! Good luck!
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline overthemoon

  • Member
  • Posts: 9
Thank you all so much for your help and support! It means  a great deal to me, and is helping me to feel less lost. I really think I need to talk to others in person who are going through this/have gone through this, and I hope I can find some while in NYC. Thank you all again for the support and thank you so much Ann and coolstone for all the information- it feels lifesaving (literally). I am going to call today, and try to get down to the city this weekend, and at the latest early next week. I still have so many questions, and so many worries- but while it may sound silly at this early place (where I don't even know what is really going on with my body) I just feel like I need to comfort of believing that I have a future with this...
Life was going (relatively speaking) very, very well -I was happy, productive, and just a few years out of university- now I'm trying to imagine a new life in New York with this. If it is hard sometimes to be around others that do not have this, have any of you found good friendships, companionships with others who are positive? I guess I'm asking, if off the internet there is a supportive community or not? And, how do any of you manage to block the 'what could have been' thoughts, that keep driving me into a crazy, depressed state. Again, I know this is early, but I feel like some real world answers to these things might help me get by, and get moving on treatment and life!
One final question - what are the chances that in a 2-3 day visit I will actually be able to go to a clinic (presently w/out insurance) and actually have all of the blood work done? I understand that the results will be back in a few weeks thereafter, but (coolstone) would the clinics you mentioned be able to take me in quickly and get the ball rolling, so to speak, or w/out insurance yet (as I have not been working in the US) will I be just out of luck? I am a US citizen and resident of New York State...
Thank you all again (from the bottom of my heart) and my god I hope this gets better...

Offline coolstone25

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  • Member
  • Posts: 42
One final question - what are the chances that in a 2-3 day visit I will actually be able to go to a clinic (presently w/out insurance) and actually have all of the blood work done? I understand that the results will be back in a few weeks thereafter, but (coolstone) would the clinics you mentioned be able to take me in quickly and get the ball rolling, so to speak, or w/out insurance yet (as I have not been working in the US) will I be just out of luck? I am a US citizen and resident of New York State...
Thank you all again (from the bottom of my heart) and my god I hope this gets better...

Hello Aaron,

As far as I remember, When i sent over to the IDC clinic  a patient who I had identified personally in the acute stage in 2010 (just on the basis of his risk assessment and symptoms) and who hadn't even tested positive before that on the Antibody tests - At the IDC clinic they promptly identified him too as most likely positive and they had everything going for him on the fast track the same day - He needed just that same day one appointment to draw blood to have it sent over for further analysis pcr-rna,(viral load), CD4, etc. - the complete panel of tests. You could walk in and still be accepted for care. You also get to meet the ID specialists there.

All you have to be is an NY resident, tell them you live in New York state, that your residence is there and give them your address for their records. I think for NJ and connecticut residents, they are not put on that program. It doesn't matter if you were working or not. it doesn't matter if you are a citizen or not. It just matters whether or not you earn enough at all and if you are from meagre circumstances, you still get good care. They do excellent blood work. It's best, if you talk on the phone with them, I am not aware what procedures they follow.

And yes, you are welcome.

I am afraid you might have to PM me, I am only mostly allowed to post under research and studies, since I am just a medical researcher and I am not allowed to post excessively in specific sections as an HIV negative (hence my few posts) or I risk being warned of violations of forum rules.

Offline coolstone25

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  • Member
  • Posts: 42
Hi there

I got your PM sent to my email (but couldn't access it on this site nor reply to you on here) - I dont know why.

If the moderators could look in to this - the original poster and initiator of this thread has written me a private message and I am unable to read the PM on this site or PM him back, is this ability disabled for me?

In which case, Overthemoon, I suggest you send me your email address in the PM(which shall be forwarded to my email) and I shall write you directly over private emails.

Offline coolstone25

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As in case of the patient I had referred to that clinic, I am confident, if you do a walk in - You shall still be accepted for care immediately(as well as counselling, which you direly need)... tomorrow is Friday, it's open until 4pm(I think). In my opinion you should see them tomorrow itself, in person, to get some counselling for a list of questions you might have prepared and not wait for the weekend when during an extended time without counselling, the panic is most likely to set in. Even if you did a walk in(and declared that you were exposed to a high risk situation and are going through an acute stage), you will most probably be tested as positive and accepted for care on the spot, they shall draw your blood for viral RNA load and start the tests etc almost immediately. As for medications etc, those are prescribed later.

All you need is a copy of your lease OR a bank letter or utils bill to an NY address. It has been determined in research that the earlier one starts treatment especially in the ARS phase(Acute phase) within first 3 months of exposure, the benefits of treatment are HUGE.

In answer to your question in the PM, I am researching in a nonclinical setting, in basic molecular and genetical sciences, with only connections to St.Vincents(the hospital that WAS there) that I had/have several friends there who had overlapping research with my fields and when I had to refer patients there.

Offline overthemoon

  • Member
  • Posts: 9
Hi again,
Thank you for all of the information. Very unfortunately I can't make it into NYC until Monday, and I am pretty sure it has been about exactly 2 months. Do you think I would still see benefit if I'm able to get everything in order and get on medication at the end of 2 1/2 - 3 months?  I have been reading a lot about current studies and the risks/benefits of early treatment. Without insurance I'm just worried about how long it will take to get approved for drug assistance/etc. and really start treatment (unfortunately w/out universal health care, I can't imagine this can happen overnight). It seems in many ways like a no-brainer to start asap, and I know there are studies in progress (and even some completed) that point to this (I'm sure you know even better than me) - but at the same time, even with the newer, less toxic drugs, if in a perfect world (which for me it is far from perfect right now) would I have a better or worse quality of life on medicine? I know that maybe a question like that does not even matter before I have blood drawn, and may be impossible to really answer, but I just wanted your honest opinion about the side effects you have witnessed/are witnessing over the past few years, and if people are really able to function well on these drugs? I know I don't have a choice in the matter (its live or die) but I just wanted an honest opinion. Thank you again for all of your support.
By the way the number I called was: HIV IDC clinic: 212-604-1777, I did not yet call the Dr. you mentioned - do you think his clinic would have a faster turn around time on approval for treatment? Thank you!!!

Offline coolstone25

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  • Member
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Do you think I would still see benefit if I'm able to get everything in order and get on medication at the end of 2 1/2 - 3 months?  
Research suggests, or atleast in my textbook, Fields Virology, fifth edition, it's been written that starting meds early, is correlated to longer life expectancy and higher survival rates over a certain period of time. In a research study(I dont know if it makes any difference for me to cite it) showed that people who started meds within the ARS phase lasting up to 3 months starting exposure, the meds were so helpful, that even after termination of the meds after a few weeks, the benefits of the treatment lasted 72 weeks beyond the date of stopping the treatment.

Quote

if in a perfect world (which for me it is far from perfect right now) would I have a better or worse quality of life on medicine?
This is something that you could post in the section "living with HIV" for the long term survivors to answer for all their different and diverse answers. I hear, for instance that Atripla gives a huge hard on for a long time, so your quality of life on medicine might actually improve ;) (hehe!) In general though, i have known people to pursue a HEALTHIER LIVES after their diagnosis, they become more diligent and careful of their health over the years, in terms of diet, alcohol/smoking, physical fitness etc... So they actually are a lot healthier than how they had been in their "wild" years where they abused their bodies over and over.


Quote

I just wanted your honest opinion about the side effects you have witnessed/are witnessing over the past few years,
Are you asking about me? I am HIV neg.

Quote
and if people are really able to function well on these drugs?

Most people do well on the current drugs. The drugs in late80s-mid90s were very toxic but these days, the drugs are getting better and better, with lower side effects by modifying them more and more by pharma industry.
People respond to medications differently. Some respond to meds more adversely - rash or dizzines(which go away), nausea(which is relatively common) etc, sometimes the side effects are harder though, but in a minute number of people(like liver problems, kidney problems, acidity in muscles (lactic acidosis) etc...) hence, after you take a few meds, your doc shall test your liver enzymes and function and your kidney function etc.

The other sideeffects such as lipodystrophy, neuropathic sideeffects or nephrotoxicity or significant mitochondrial toxicity do NOT occur for a long time in many of those who have started the treatment early according to a study OR until only ATLEAST AFTER YEARS AND YEARS of having been on antiretroviral therapy.

Quote
I know I don't have a choice in the matter (its live or die) but I just wanted an honest opinion. Thank you again for all of your support.
Welcome. :)

Quote
By the way the number I called was: HIV IDC clinic: 212-604-1777, I did not yet call the Dr. you mentioned - do you think his clinic would have a faster turn around time on approval for treatment? Thank you!!!
The doc is IN the IDC clinic, I gave you his direct line to speak to him.
He is informative and considering you are a new positive, he is very likely to hear you out and guide you because he is an infectious disease specialist in Internal Medicine, I am very confident in his approach towards patients. He has a private practice too, but since you are not insured, I didnt think giving you his private clinic number would have made sense. The fastest turn around time you can have is by going to the clinic in person and getting your blood drawn, explaining them that you are poz and they shall do everything for you right there and then. That's to the best of my knowledge, unless I have been left behind in the clinical game.
« Last Edit: April 15, 2011, 01:20:18 PM by coolstone25 »

Offline spacebarsux

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  • Survival of the Fittest

Hi overthemoon,as a newly diagnosed guy- in my experience, for every medical professional\expert that says its much better to start meds early you will find an equal number of experts who say its better to wait before starting treatment. Ultimately, its your decision but it depends heavily on what your cd4 and vl is. Get your labs done soon and discuss your next steps. Your numbers will tell you where you stand and your doc can tell you what's the appropriate course of action.              In my case, I was also leaning heavily to start meds soon, but my doc told me, given my numbers I can afford to wait it out a bit cos going on meds is a life-time commitment and I can't afford more screw ups. Good luck :)
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline coolstone25

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For your consideration, Information of usefulness/importance:

http://www.natap.org/2011/CROI/croi_38.htm

http://www.ncbi.nlm.nih.gov/pubmed/19696651

http://ijsa.rsmjournals.com/cgi/content/abstract/22/3/146

http://clinicaltrials.gov/ct2/show/NCT00705926

For those who have had HIV for a while(and ARE NOT SURE when they were infected) here's some information in shorter, simpler words:
http://www.sciencedaily.com/releases/2011/04/110413093219.htm
"[.... The decision of when to begin treatment with antiretroviral drugs is a subject of some debate, with the experts evenly split on whether to begin antiretroviral therapy immediately upon HIV diagnosis or waiting until a patient's CD4 cell count drops below 500 cells per microliter.
Early last year, the UCSF Division of HIV/AIDS at San Francisco General became the first clinical practice in the country to recommend treatment upon diagnosis to all of its HIV-infected patients. The San Francisco Department of Public Health followed suit shortly thereafter. The two programs combined treat about a third of the HIV-infected patient population in San Francisco.   ...]"

However, take in to regard(for anyone and everyone), disease progression has a lot to do with what genes you were dealt with at birth. You may have advantageous genes, HLA-B57, HLA-B27, HLA-A11, CCR5-Delta32 deletion, etc, as against the CCR1 receptor for fast progressors to exert better viral load control. You may need to do testing of your own genes to model a prediction of your probable disease progression rate, these haven't been accounted or included as a factor to consider when prescribing ART to patients in acute phase or early HIV infection.

 


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