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Author Topic: Newly poz. So many questions.  (Read 5576 times)

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Offline kellybryana

  • Member
  • Posts: 97
Newly poz. So many questions.
« on: January 19, 2011, 01:40:25 AM »
Hey y'all

My name is Kelly, and I'm 23 years old. I tested positive on Oct. 25, and I have sooooo many questions about starting treatment. I was infected in April of '10, so I'm still in the very early stages of the disease. I have done a LOT of reading and research on the progression of HIV, and the side effects of the drugs used to treat HIV. I've also read through a lot of the threads in this forum, but I still don't feel like I have enough information to make a decision.

I have not gotten my first labs back yet, and I have not had the opportunity to sit down with my doctor yet to discuss treatment. From the little interaction I had with him though, before getting a ridiculous amount of blood sucked out of my poor, unsuspecting arm, I got the distinct impression that he wants me to start treatment immediately. This might have been him saying "You should start treatment as soon as possible," I don't know  :P

By some strange universal alignment, I was lucky enough to learn that my next door neighbor has been living with HIV for over 25 years and has had no complications. I talked to him about treatment, and he suggested I just take care of myself for a while, and defer going on treatment. I understand that my neighbor is not a doctor, but 25 years with the disease gives his opinion some weight in my mind.

I have so many questions, I don't know where to start, so I'm just going to post whatever comes to my mind, like rapid fire...

What are the benefits of starting treatment early?
I've read about crazy side effects of drugs, are living with the side effects any better than living with the virus without treatment? I feel healthy...
How long does lipodystrophy take to set in?
Does everyone develop lipodystrophy?
What are the potential complications with starting treatment after my CD4 count has dropped below 350?
Am I more likely to run into health problems down the line if I do?
Can I teach my immune system to suppress the virus on its own? (i pretty much know the answer to this question, so I will pose a second...) WHY NOT?!?! If this stupid virus can mutate itself, and It's only a set of RNA instructions inside fat, then why can't my immune system fight back?
There are people out there who are long term non progressors, and elite supressors, do they do anything different than others who aren't termed one of the two, or is it just genetic?
Once I begin medication, am I ever going to be able to stop?
So many HIV medications do so many different things in the blood system, why haven't scientists found some combination of drugs that completely eradicate HIV from the human body?
Are scientists holding back from finding a true cure so that they can continue making profits off of HIV patients who rely on HIV medication to live?
What about that dude in Germany who was "cured" by stem cell implantation? I WANT THAT!
I've been very good to my body in my life. I was a competitive gymnast for 10 years, a competitive swimmer for 5 years after that, and Ive been working out consistently and eating well for my whole life. I don't smoke, or do drugs. I drink only in social occasions, and I rarely actually get drunk. Do these facts help me at all?
What happens If I lose my health insurance and I can't afford medication anymore?
What happens if assistance programs for copays for medications run out?
What happens if I decide to move out of state or out of the country? Can I even move out of the country? I know the USA doesn't accept people in who are HIV positive.
Does HIV affect hair growth?
Am I going to have a slow painful death now with disease progression and drug side effects?
I've had herpes symplex A (cold sores on the lips), Mononucleosis, HPV, and now HIV, does this mean that I am just prone to getting viruses?
Since I have had all these viruses, does it mean my body is more equipped to deal with HIV because it has experience with fighting viruses, or does it mean that my immune system is weaker because it has had to fight all this?
Does it mean that I am genetically inferior? Is it irresponsible to procreate?
If I go on treatment earlier, am I more likely to be cured in the future when/if a cure is found?
If I don't go on treatment as soon as possible, will I never get cured because the disease has progressed so much?
The treatments themselves cause health conditions that could potentially kill you, or at the least, cause a lowered quality of life. Why is being on treatment better than waiting for a while to start?



I appreciate any and all responses to any of these questions. I'm confused, and angry, and frustrated doing so much reading. I feel like I'm running in circles. It would be really nice to get some human input.

Thanks,

Kelly

Offline zach

  • Member
  • Posts: 1,915
Re: Newly poz. So many questions.
« Reply #1 on: January 19, 2011, 05:13:40 AM »
hi kelly, that sure is a lot of questions  :-\
« Last Edit: January 19, 2011, 05:41:24 PM by zach »

Offline roy100

  • Member
  • Posts: 123
Re: Newly poz. So many questions.
« Reply #2 on: January 19, 2011, 08:30:53 PM »
Wellcome to the forums:

I am sorry you just find out you are positive.
You will receive a lot of advice from the people here who has many posts, who have the most experience, I am sure of it. But finding all the answears to your questions , is a homework you will have to do.
All the answears are in the search button of this web page.

Having a neighboard with the VIH infection for 25 years will be of great treasure to you, as he has been in your shoes , and has a lot of experience. I would be very inclined to seek him for support.

I was diagnosed , in March of the gone year, maybe as you where getting sick, 10 months later, I have done my homework, and have learn so much in this web page, and thanks to all the supportive people that will give you advice, but you will have to find the answears  to each of those questions one by one, one step at the time, as you need to learn and assimilate each answear to avoid saturation and learn and get experience.

Just wanted to wellcome you, and give you my advice, I am sure soon the big leagues will give you  some answears soon .
Roy
« Last Edit: January 19, 2011, 08:35:46 PM by roy100 »
Diagnosed 18Th March 2010
March 30Th VL +100,000 CD4 46
CD8T  575 CD8 %60.6
On Truvada and Kaletra. . Remeron 15mg  and150 mg  wellbutrin xl for depression. Clonazepan 2 mg to sleep. Omeprazole 20  once a day.
July 17 2010 Vl 362 CD4 155, 6.4 %
CD8T suppressors 1482 CD8% 61.1
 Nov 16 2010: V l 937 CD4 188,10%
CD8T Suppresors 997 CD8%55.8
August 15th 2011 Vl UD, less than 40.
CD4:543(26.7%) CD8:887 (43.6 %) Ratio .61
Jan 14th,2012 ,less than 40.
CD4:478 (24.4%) CD8: 962 (49.1%) Ratio.50
June 2012 CD4 599, CD8 856 UD
Oct 2013 CD 702, CD 843 UD Ratio:.87

Offline kellybryana

  • Member
  • Posts: 97
Re: Newly poz. So many questions.
« Reply #3 on: January 19, 2011, 08:48:39 PM »
Yeah, I HAVE done a lot of online reading, especially in this forum and on this site. This site has been a really good resource for me, but a lot of questions I posted, I don't know if I will be able to find them on any website. I look forward to talking to my doctor, and I've already ordered the book that is talked about a lot in the newly poz section of this forum...the guide for newly diagnosed HIV patients. I was hoping to get stories from people who have chosen to start meds right away, and stories from those who waited a while to start meds. I'd like to know the varied results of both choices...maybe I should start a new thread?

Offline surf18

  • Member
  • Posts: 525
Re: Newly poz. So many questions.
« Reply #4 on: January 19, 2011, 09:09:39 PM »
i started meds right away. i was dx/d with cd of 229 and vl of 16,000. so with a lowish cd i chose to do meds right away.
altripa wasnt for me as im a loon. and that would set me off.
my dr started with truvada and veramune, the veramune gave me a rash from head to toe.ditched that in favor of selzentry.
seem to be doing ok
apparently the newer meds are less likely to cause lipo issues. thats what i was told.
the newer meds are also easier on the system the former meds but dont be fooled powerful stuff.
you can pm with any questions you have.you had so many questions in your post i couldnt remember any of them but the lipo ones. ha

Offline drewm

  • Member
  • Posts: 1,187
Re: Newly poz. So many questions.
« Reply #5 on: January 19, 2011, 09:32:37 PM »
You ask a ton of questions and I can certainly appreciate your desire to know as much as you possibly can. In my situation, and I am talking about myself, I read "too much" into internet posts, WEB MD and so on. I started to see things that weren't there and started to self diagnose. I am not, in anyway, suggesting that you might do this I am just offering my experience as a heads up.

I generally save the health questions for my doc and let him do the doctoring. HIV/AIDS is way too complicated for me to wrap my brain around and I figure that my doc, here in Houston, has worked on this disease long enough that he knows what he's doing. I do ask questions. A lot of questions but I try not to read a whole lot into my condition.

I used to be concerned if I coughed, or if I had sinus problems or chest congestion. Having AIDS makes you worry about everything. I had a nurse take me by the hand and she said, stop worrying yourself. Having AIDS and being being treated for it does not mean you won't get sick from time to time. Pay attention to your health but any given ailment is not the end of the world. She was right.

Get checked out regularly but try not to worry.
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

TRIUMEQ - VALTREX -  FLUOXETINE - FENOFIBRATE - PRAVASTATIN - CIALIS


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

Offline phildinftlaudy

  • Member
  • Posts: 2,975
  • sweet Ann what you think babe...
Re: Newly poz. So many questions.
« Reply #6 on: January 19, 2011, 09:54:31 PM »
Welcome to the forums -
I read through most of your questions -
Most can get answered by using the search box on this site and doing a key word search on topic areas you are looking for.
Many of your questions are going to be answered with opinions - which means that you may get different answers for different questions.

Many of your questions are normal early diagnosis questions related to worry and projection of things that haven't even happened and may not happen.  Take it a day at a time.

Between your doc, reading the topic areas in the treatment section and the various thread on these forums you should have a good amount of your questions answered or at least have some replies that you can think about more, etc.

And, stick around, read the posts, ask questions (in moderation - LOL) and you will probably find that over time many of your questions - if not answered - will probably become less on your mind.

Once again, welcome.
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline leatherman

  • Member
  • Posts: 6,333
  • Google and HIV meds are Your Friends
Re: Newly poz. So many questions.
« Reply #7 on: January 19, 2011, 10:58:38 PM »
Hey Kelly!
Sorry for the reason you're here; but I'm glad for found this site. Definitely read through the Lessons section to really get answers to most of your questions. However, I'll take a stab at some of them.  ;D


I've read about crazy side effects of drugs, are living with the side effects any better than living with the virus without treatment? I feel healthy...
feeling healthy only means so much. ;) once you have lab work done you'll know better whether it's time to start meds. And yes, if you need the meds soon, whatever side effects you have - which very well could be none! ;) - are much better to have than being dead as HIV is a terminal disease.

How long does lipodystrophy take to set in?
Does everyone develop lipodystrophy?

Not everyone gets lipo. A lot of it is side effects from older meds, so you could shelve this worry for a time.

What are the potential complications with starting treatment after my CD4 count has dropped below 350?
the complications? LOL actually the closer to 0, the more the "complications of meds" :D are that you don't die and your immune system improves. :D Starting meds at the potential time (<=350) actually solves complications ;) Remember (just like Google  ;) ) meds are your friends.

Am I more likely to run into health problems down the line if I do?
Can I teach my immune system to suppress the virus on its own? (i pretty much know the answer to this question, so I will pose a second...) WHY NOT?!?!
So many HIV medications do so many different things in the blood system, why haven't scientists found some combination of drugs that completely eradicate HIV from the human body?

Biology just doesn't work that way. :-\

There are people out there who are long term non progressors, and elite supressors, do they do anything different than others who aren't termed one of the two, or is it just genetic?
genetics. there is nothing you can do, besides go on meds at the proper time, to stop or slow down HIV. (by the way, although I'll say more about the berlin guy shortly, but the transplanted stem cells he was given had this genetic difference.)

Once I begin medication, am I ever going to be able to stop?
Nope, just like taking insulin if you're diabetic, or highblood pressure meds, etc, meds are an everyday event once you start. you'll be just like millions and millions of people taking meds everyday. :D

What about that dude in Germany who was "cured" by stem cell implantation? I WANT THAT!
He had luekemia, radiation, chemo, and stem cell transplants to "eradicate" (not "cure") his HIV. He's had neurocognitive, speech, and gait problems and a personality change. He's gone through years of meds, and several extra spinal taps and stem cell transplants. Most people die from all of that, so the chances are really good that this "cure" will ever work again. You really probably do not want what they did to him. The jury is out on whether this "cure" has been worse than the disease or not.

Am I going to have a slow painful death now with disease progression and drug side effects?
It's not 1995 anymore (thankfully! ;D), so probably not. I survived being hospitalized with OIs back in 1997 and 1999. I just celebrated my 18th aids-aversary (probably infected 26 yrs) and I'm doing pretty darn good as I'm approaching my 49th bday. I'm not expecting (at least, I haven't been since the better meds introduced in the early 2000's) to have a slow painful death with disease progression, so you probably shouldn't expect it either. ;)

The treatments themselves cause health conditions that could potentially kill you, or at the least, cause a lowered quality of life. Why is being on treatment better than waiting for a while to start?
That is very untrue! :o The treatment is the only thing known to stop HIV from destroying your immune system and leading to death. Trust me. I've seen an awful lot of friends and two long-term partners die because they didn't have meds or didn't go onto meds in time to save their lives. The meds have totally raised and improved my quality of life!!

However, deciding exactly WHEN to start is a whole other, and complicated, issue/decision though; but once you reach certain scientific medical markers (<=350 cd4 count, elevated and rising viral load, oppportunistic infections, etc) meds are essential to fight off HIV from turning into AIDS and allowing diseases to kill you.

Also I should point out that most of the meds on the market actually don't cause that many side effects. Reading the package inserts, and learning about the meds, you can find out that statistically, more people DON'T have side effects than DO have side effects. Of course, often people have mild or temporary side effects as their bodies adjust to meds, but "long term health conditions that could potentially kill you brought on by the treatments themselves" just don't happen to everyone.

At this kind of a support site, of course, you'll meet many people looking for answers who have side effects so don't believe just because you read a lot of scarey stories here that that is how it happens to everyone. Although I myself have had plenty of side effects, I've never started a med expecting to have a side effect. LOL  as I said the scientific evidence from studies on the meds shows that many people do not have side effects. When you start meds, just think happy thoughts that you'll be in the 60% (this is just an estimate off the top of my head, not an official number :D ) group that doesn't have serious or long term side effects.

Now, sit back and take a deep breath. ;) There's a lot to learn, but there's time to understand all this. And there are plenty of people here who will help with your questions - though I suggest trying one or two questions at at time. LOL Now go read through some of those Lessons, and see what questions you have after that.  ;) ;D
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline mikeyb39

  • Member
  • Posts: 948
Re: Newly poz. So many questions.
« Reply #8 on: January 19, 2011, 11:12:44 PM »
hi there,

I'm pretty new to all this myself, i was diagnosed in November was infected about a month previous. i went thru a few weeks of being really sick, had all the blood drawn you are speaking about, my CD4 was low under 300, but that was taken in the middle of my seroconversion, but after about a week i made the decision to start meds early and my doctor agreed with my decision, but he let me make that decision.

I totally trust my ID doctor, I've been going to him for years before i was positive, so I take his advise to heart. The first thing he told me was to not get too bogged down into reading and googling things on the internet, you can drive yourself crazy.  So if I have a question about something I save them up and get the answers from him when i visit.

I too was concerned about starting meds because i read too many blogs of folks that had horrible experiences, but not everyone has those experiences.  I was put on Atripla and been on it for almost two months and so far havent really had any side effects.
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline kellybryana

  • Member
  • Posts: 97
Re: Newly poz. So many questions.
« Reply #9 on: January 20, 2011, 04:48:06 AM »
Thank you guys so much for taking time to reply. It has really helped me to calm down, lol. Especially you, leatherman. AWESOME!

So basically, my body isn't going to morph into something completely unrecognizable in a matter of 5 years or less? I've always been super athletic and, as vain and superficial as this all may sound, I've worked hard for this body! I don't want to lose it  :-\ I was preparing myself though, emotionally and psychologically, for this if it happened. You know, sorting out and rearranging my priorities. I still think it is good practice to do that, but if I don't have to lose my body, that would be super fantastic.

I'm a little nervous about the new meds not having as many, or any side effects. That all sounds awesome, but you are still putting very powerful chemicals into your body. I feel like, your body needs to manifest some way to deal with these chemicals, and we will not know the long term side effects of the new drugs until people have been taking them for years, and being a guinnea pig doesn't sound cool. I know it will keep me alive though, and improve my quality of life, so I'm willing to do what it takes.

I'm here for a purpose, damnit! I will not leave here til my work here is done.

Offline d-boy86

  • Member
  • Posts: 120
Re: Newly poz. So many questions.
« Reply #10 on: January 20, 2011, 09:29:39 AM »
Hi Kelly --

I've been pos for a year. Nothing has changed besides taking one pill a day (Atripla). There are MINOR side effects, but those can usually be fixed by a change of diet or just simply not eating while taking your medications (dumb me...lol). Everything else is a breeze. Leatherman is right -- the HIV treatments have come a long way. So don't expect to take a dirt nap anytime soon. I was diagnosed when I was 23 going on 24. I will be 25 in a few months. Just eat healthy, think positive and work out or at least do something that will keep you active. The body will need it.

Oh and the only side effect I had when eating with my meds is being tired as hell in the morning. Taking them on a empty stomach before bed is best because it allows the medicine to process a little quicker. If I take my meds and don't go to sleep, I usually feel like I smoked a shit load of pot. So if you do any recreational drugs -- stop. Atripla is actually powerful enough to give you your own fix. LMAO.

Just smile babes, everything will be fine. Believe it or not HIV is now a live-able condition. Just be blessed that you'll have access to the medications when need-be and that you found out early. Finding out late is what people should be worried about.

Offline leatherman

  • Member
  • Posts: 6,333
  • Google and HIV meds are Your Friends
Re: Newly poz. So many questions.
« Reply #11 on: January 20, 2011, 11:22:44 AM »
So basically, my body isn't going to morph into something completely unrecognizable in a matter of 5 years or less? I've always been super athletic and, as vain and superficial as this all may sound, I've worked hard for this body! I don't want to lose it
Probably not - as long as you watch your diet, exercise, etc. Plenty of people have been on HIV meds for 20ish years and while many of them have problems, many don't. Of course, eventually age will have some say in the matter and get to you some; but that's just par for the course of being human. LOL

I'm a little nervous about the new meds not having as many, or any side effects. That all sounds awesome, but you are still putting very powerful chemicals into your body. I feel like, your body needs to manifest some way to deal with these chemicals, and we will not know the long term side effects of the new drugs until people have been taking them for years, and being a guinnea pig doesn't sound cool. I know it will keep me alive though, and improve my quality of life, so I'm willing to do what it takes.
exactly! we are all still guinea pigs; but at least the newer meds are a lot less harmful than AZT mono-therapy and a lot more effective. ;)  What effect will be coming down the line in 20 yrs from taking these currents meds? we really just don't know until people are on them for 20 years. (not being a gambler myself, I'm not all for fast tracking meds per se; but you can't keep "testing" meds for 30 years to wait for long term effects while people are dying) Of course there are medical statistical models that give us an estimate about the effectiveness of these meds into the future, but in the end, yes, we're still guinea pigs. But being a live guinea pig is always better than being one of the dead ones.  ;)

Because the catch is when HIV runs it's natural uninterrupted course it results in AIDS and that ends in death. So, to be alive in that 20 yrs to deal with whatever side effects might come, you have to take the meds to stay alive. The sad truth is, for example, that my two late partners (the one who died in 1994 before any meds could help him so he remained untreated, and the one who died in 2008 because he went untested and untreated too long) are gone and won't be around in 20 yrs to deal with any future side effects because they didn't get to take any meds. Thankfully and luckily however, I have taken a slew of meds (good and bad) and have already lived nearly 20 more years to deal with my future side effects - which aren't too many at all.

mikie
(who thinks it's a hoot that his spellcheck want to replace "kellybryana" with "jellybean" ROFL ;D :D)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline HIVinNC

  • New Member
  • Posts: 2
Re: Newly poz. So many questions.
« Reply #12 on: January 23, 2011, 02:22:33 PM »
Hi Kelly!

Eventhough I've been postive now for 17+ years, I wouldn't feel comfortable answering your questions as I am not a medical doctor. I can speak to my own journey in being POZ though, and think taking the bull by the horns is the best way to handle an HIV diagnosis. You are educating yourself, and that alone will take you very far. Always be in the frame of mind that you are the one in control of HIV, and don't EVER let it control you. At that point the virus wins, and that is an outcome nobody wants. KNOWLEDGE=POWER.

I convinced myself a long time ago there was absolutely nothing wrong with me. I did not feel pain, my numbers were very good. The ignorant fringe of society may tell me that I have a problem, but they don't know me like I know me. Don't ever believe someone elses opinion of what HIV is or isn't. You have to develop that opinion yourself, for yourself. And for God's sake, DON'T LISTEN TO THE TV! The media, like prostitutes, are there to sell themselves. There is a lot misinformation out there, don't ever fall prey to that.

I have a virus. Lots of people have viruses. I just happen to have the one with the most social stigma attached to it. It is nobodys business but my own, and I do not openly discuss it with ANYONE for fear of being thrown up against their ignorance. It is not my responsibility to teach them about my virus.

The most important thing you can do for yourself is not to reinfect yourself. This is where so many of my friends have gotten themselves into trouble. You already have one flavor of HIV, you don't need anymore.

You have been blessed with a neighbour that is sharing your journey. Use that resource and build a very strong bond with this person. I always love talking to other POZ persons, it is always mutually beneficial, so don't ever feel like you are being a burden to this person. They are getting as much or more out of the conversation as you are!

And remember, there is always help (and in some of the most unexpected places I might add) don't ever be afraid to reach out if you need to.

Scott

PS: All my friends that refused to take the meds because they were concerned about the side effects (a total of 6 in 17 years) are now dead. There ARE benefits to being a lab rat!
« Last Edit: January 23, 2011, 02:36:54 PM by HIVinNC »

Offline mecch

  • Member
  • Posts: 12,174
  • red pill? or blue pill?
Re: Newly poz. So many questions.
« Reply #13 on: January 23, 2011, 06:45:41 PM »
Hi Welcome to the forums.

"The treatments themselves cause health conditions that could potentially kill you, or at the least, cause a lowered quality of life. Why is being on treatment better than waiting for a while to start?"

That is a statement.  And then a question. 

First the statement.  It is not true.  In any event, its not true for you, having just seroconverted AND with today's and tomorrow's drugs.  No doctors are saying these drugs are going to kill you, nor are they saying they are going to lower your quality of life.  This is where you have to start educating yourself.   OK maybe a few decades down the road we'll discover that today's meds cause this or that complication.  For the moment, hopes are high.

You ask the question based on an erroneous belief - and fear - of drugs. 

When you start drugs doesn't have much to do, these days, with avoiding HAART because its poison, etc etc etc.  There are a lot of factors that go into the right time to start HAART -- so this is another area that you need to educate yourself.



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

Offline tednlou2

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Re: Newly poz. So many questions.
« Reply #14 on: January 24, 2011, 02:24:02 AM »
Like you, I have worries about what the medications will do adversely to my body.  I'm not sure why many feel this way about HIV meds.  If you watch any commercial for a medication, there are always those scary possible side-effects.  I even had concern over the depression med, Cymbalta.  I kept seeing the commercials and they seemed to focus on possible liver side-effects.  I didn't know whether Cymbalta was really hard on the liver--more so than other depression meds, or what.  I know many people on Cymbalta and have never heard of anyone having some severe side-effect.  I believe, even if just a couple people in trials experience a side-effect, they have to report it.  So, I'm not sure whether HIV meds are really that much different from any other med on the market.  I believe that new med to make your eye lashes longer says it could cause permenant eye damage.  Lipitor commercials say it can cause serious liver problems.  The list goes on.   

Having said that, I will see questions to docs on HIV sites about having side-effects from the meds.  Some will talk about kidney problems from Truvada and yellowing of the eyes from Reyetaz--which is almost always harmless unless other issues are happening.  I have to remind myself that the vast majority of people doing well on the meds aren't writing in to the docs telling them how great they are doing.  We usually just see the questions from people having issues.  But, I'm sure when I start meds, I'll probably worry what the med is going to do to me.  From listening to others here, HIV meds make most feel better than they have in years. 

But, if you're just recently infected, you may not have to make a med decision for a while.  Or, you may decide to not let HIV go untreated and start.  Dr. Gallant at John Hopkins is a big believer that anyone with HIV should be on meds.  He says the drugs are safe and that untreated HIV, even for a few years, is not good.  Other docs/experts will say no need to rush on meds until you fall below CD4 500.  I've been poz around 10 years and not on meds.  I'm starting to think I shouldn't let the virus go untreated much longer regardless of my numbers.  I do worry about the unseen damage HIV may be doing.  For me, it isn't so much worries about side-effects holding me back.  It is the thinking the sooner I start the sooner resistance issues may (stress may) arise.  And, it is the psychological issue that I now have to take meds everyday.  I can't miss any doses...that kind of thing.  I'm more worried about being adherent.  I don't want to screw up any regimens due to my own fault.     

Offline kellybryana

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Re: Newly poz. So many questions.
« Reply #15 on: January 24, 2011, 03:08:36 AM »
Hey tednlou2. Yeah, my neighbor who has been positive for 26 years didn't begin medication for years and years and years. He said that his cd4 count went as low as 85 before he started meds. He is a devout buddhist though, and he chants every morning and night. I think that his intense spirituality has helped to keep him healthy. He hasn't had any complications with anything, and hasn't gotten any OI's. He's also one of the happiest people I know.
I'm the type of person who doesn't even like to take ibuprofen if I have a head ache, so starting powerful HIV meds is very daunting. I don't like to put anything unnatural in or on my body, and knowing that if I want to live, I have to go on medication at some point, kinda pisses me off. I think I am going to work on growing spiritually, and when the time is right to start medication, I'll know. :)

Offline mecch

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  • red pill? or blue pill?
Re: Newly poz. So many questions.
« Reply #16 on: January 24, 2011, 05:27:44 AM »
Just note:  yes happiness and spirituality are important for health.
However - I know for a fact one long term non progressor now in his 60's who is spiritually bankrupt, a partier, lives a pretty stressy life, fucks like a pig at his old age rather than chanting everyday.  But, he is happy, I'd say, and successful.  And he's a LTNP.
I.E. - often times there things are simply genetic.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline carousel

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Re: Newly poz. So many questions.
« Reply #17 on: January 24, 2011, 05:48:48 AM »
Hi Kelly

Welcome to the forums.

Thanks for posting your concerns.  They remind me very much of the feelings I had and have since I was diagnosed 7 years ago.

Especially the feeling that something was in control of me, going on inside me that I couldn't change.  I tried to get as much information as possible, but in the end it just became too much.  Information overload.

Going on meds early is a personal choice.  I decided to wait until my CD4 count fell under the UK recommended 350 to start treatment.  That was a few weeks ago.  For some friends, their counts dropped quicker, earlier.  I don't think that I did anything especially different, apart from giving up partying.

My best friend started early with what I would call a healthy CD4, which was his choice.  I would not have waited until my CD4 dropped to a CD4 of 85, that sounds kind of dangerous, no matter how healthy your friend felt.

I hated taking tablets and have a history of getting medication from the doctor and then just putting it in a draw and forgetting about it.  But when I had to start, I have made sure that I have taken the tablets and as near to the time needed as possible.  It's what I need to do to keep healthy.

I think spirituality can be very helpful for us, our wellbeing and our journey with HIV, but it is not going to keep the HIV at bay, no matter how much you chant.

Offline mecch

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Re: Newly poz. So many questions.
« Reply #18 on: January 24, 2011, 10:26:55 AM »
Think about this. Over the following months years your attitude will change and you'll see HIV as medical condition without all the crap that gets piled on top.  You'll probably want to stop thinking about treatment as "powerful chemicals" and you'll eventually come to terms with the fear of medicine.  Also the drugs you might take in the next few years, won't be the same as the ones in 20 years!  The drugs will be better.  In 20 years there will be all sorts of things we can't imagine today.

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

Offline justpoz

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Re: Newly poz. So many questions.
« Reply #19 on: January 26, 2011, 08:51:21 AM »
Hello, Kelly, I can understand how you feel, it has been two years for me, and while I could relate a great deal of information about my experiences, I think answering a few of your questions from my perspective and experience would serve you better,)

What are the benefits of starting treatment early?

At first I was in denial, and so I went to an ID, doctor, probably like you have already done, and awaited the results, I was sure it would come back a false positive, but it did not, the doctor wanted to start treatment right away, we discussed it in detail, the common denominator, is this, (first nothing can substitute for your own doctors professional opinion) but here is how it was explained to me, the body and its immune system ability to fight off infection is partially tied to C4 count, there is evidence to suggest that the earlier you start treatment the better your CD4 count can hope to improve, however the longer you wait, and the lower your CD4 count goes, the harder it is to get that CD4 count up.  My Viral load was not as high as some but still high enough to cause some symptoms, mild, for the most part, but still concerning.   Only you and your doctor can really make this decision, however, from what I can see on this forum and from my own stats it is true, the sooner you act to preserve your CD4 count, the better you will be in being able to fight off infections.



I've read about crazy side effects of drugs, are living with the side effects any better than living with the virus without treatment? I feel healthy...

Yes side effects are difficult to manage more so at first, I believe most people probably take their medications at night before bed to minimize the side effects, though vivid dreams are often a result of this, over time it should become less obvious, however everyone is different, how you react to the drugs more so in the very beginning will change, over time it becomes more manageable. 
(again always consult with your doctor if you have any concerns about side effects)


How long does lipodystrophy take to set in?

This is far from proven science, but the bottom line, is this, you are what you eat, if you have a bad diet, and you eat pizza three times a week, you are going to have problems, (this could be applied to anyone's health)

With this disease and treatment, there are so many different things to consider, the psychological side of this disease is also something that often is just over looked, depression often can result in over eating, you can sometimes feel like, " I might be gone in a month "  Might as well eat that steak, that pizza, that calzone, who cares, right,"  Well, a bad diet can contribute to the so called lipodystrophy, while it appears that in some instances, it is applicable, when you consider the tendency to throw caution to the wind, and eat what ever you want, it could contribute to this issue.

(again, every case is different, only you and your doctor can truly make an educated decision)

I did not begin to notice any appreciable changes, until after one year, but every instance is different, it is very important to eat right, so do not starve your self thinking you may get fat, you body needs nutrients to remain healthy.  (make sure you are getting the right kind of care) (do you see the trend here)

Finally, while I appreciate that you have a neighbor who has some truly sage advice, please remember that because everyone is different, your decision should also be different, you body is different, your health is different, your life style is different, you are different, I could cite several thousand things here about how unique every single person on this earth actually is, but the bottom line here is that you weight every decision based on your own terms.

Just because one person may have experienced certain aspects of treatment, or living with HIV does not mean that you will have that exact experience, as well you may have and very likely will have your own unique challenges, just remember to remain upbeat, and when you need support seek it out, there are people who care and you are not alone.

disclaimer this is not advice seek professional competent medical opinions for your unique situation.

Just Poz
diag 08  vl 60,000 cd4 360
started atripla, 708
could not afford cost of meds.
stopped atripla 808 started atripla 109  vl 90,000 cd4 250 | 209 vl undect, cd4 275

Changed meds Truvada 200-300
Isentress 400 | 0312  vl und  cd4 550
snip
1212  vl und  cd4 625
0113  vl und  cd4 675
12/13 vl und  cd4 720

Feb 2014, insurance blue cross blue shield, increases co-pay from 120.00 to 970.00, tier 5, 33 percent of retail prices.

Cannot obtain any patient assistance, the AFA is a serious threat to patients with HIV. 

Unable to afford to purchase medications.
tired of fighting to stay alive.

March 4, 2014, VL, 161,000 cd4 400
Terrified but helpless to do anything about it.

Offline surf18

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Re: Newly poz. So many questions.
« Reply #20 on: January 26, 2011, 05:35:53 PM »
So YoUve got lipo from altripa? Isn't thst rare?

Offline WhySoUnfair

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Re: Newly poz. So many questions.
« Reply #21 on: March 05, 2011, 08:45:26 PM »

Once I begin medication, am I ever going to be able to stop?
Nope, just like taking insulin if you're diabetic, or highblood pressure meds, etc, meds are an everyday event once you start. you'll be just like millions and millions of people taking meds everyday. :D


Once we find a cure, do we still have to take meds evyday?

Offline leatherman

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Re: Newly poz. So many questions.
« Reply #22 on: March 05, 2011, 10:04:28 PM »
Once we find a cure, do we still have to take meds everyday?
kind of a silly question there. ;) A cure would imply that the infection was eradicated and of course in that scenario no more HIV-suppression medications would be needed. But a cure is still quite a ways off, so for the time being and for some time into the future, HIV+ people need to come to grips, emotionally and practically, with the requirement of taking medication daily for the rest of their lives.

However, don't make too big a deal about that. ;D There are plenty of other illness and conditions that require people to take medication every day. (I know very few people over the age of 40 or so who are not on daily medications of some sort). I would imagine that even once a cure for HIV is found, most of us will still end up on daily medications for diabetes, bone density, cholesterol, blood pressure, etc - just like those who have never been infected with HIV.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline CaptCarl

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Re: Newly poz. So many questions.
« Reply #23 on: March 06, 2011, 10:48:49 AM »
Good morning Kelly-

   Welcome to our little family here at the AM Forums! Being newly diagnosed is a scary time for everyone. So many questions needing answered, and obnoxiously enough, every answer poses another set of questions. I have likened having HIV to looking at a large diamond that has more facets to it than you can count. Every time you think you've see all the facets, you realize there are still more you haven't looked at. I see from reading the posts here, that you've gotten some excellent advice from a lot of our members. There is a huge amount of info out there for you to absorb, and it can and will become overwhelming at times. Please remember to step away from it from time to time and give yourself a break.
   Try not to let HIV dominate everything. It is easy to let this happen, and it likely will for awhile, until you have adjusted to it. Remember, HIV is only a part of your life and who you are, not all of it. You will get used to this, and it won't seem so overwhelming. Maybe not today or tomorrow, but you will, I promise.
   Also try to be careful when it comes to worrying about side effects. Some people get them, some don't. And even if you do, they frquently on last for a few weeks as your body adjusts to the meds. When you get your meds, they come with a little sheet describing what the side effects can be. My advice to you is to not read any of it, the mind is very powerful, and you can bring them on by obsessing about them. If you start to notice things after taking the meds, then look at the sheet and see if it all lines up or not. Some thing may just be coincidence.
   A few key things to remember for sanity preservation: Try not to get too wrapped up in the numbers game. You will be having all sorts of numbers thrown at you from your docs, and they can become major source of worry. Just try to keep in mind that the numbers are only guidelines that the docs use to figure out what's best for you. They are not an indicator of how sick you actually are. Even if your numbers look bad, if you feel good, that's the important thing to stay focused on, how you feel. I had a friend with a t-cell count in the single digits and a viral load that was somewhere in the stratosphere, and he felt fine. He lived for several years without any health related incidents. When he did pass on, it had nothing to do with HIV.
   And finally: DO NOT BE ASHAMED OF BEING POSITIVE!!! Some people will try to put you down for it. You will hear a lot of crap from idiots who know nothing. Ignore them. Hold your head up high, and maintain your dignity, there is nohing wrong with you. And if they're particularly annoying, just tell them to Fuck Off :) Sometimes that's the most threapeutic thing you can do ;)

   Hope this helps.

CaptCarl
The only thing I can do straight is shoot..

 


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