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Author Topic: new and first results  (Read 7177 times)

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Offline daisychain

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new and first results
« on: August 14, 2008, 10:30:22 AM »
hi

Myself (angel) and my fiance (steve) were diagonsed on the same day about 2.5 weeks ago.
I have been struggling so much with this and cry every other day, im honestly trying to be strong but honestly I feel like shit.

We went for our first results today:
Angel: CD4 980 VL: 4000
Steve: CD4 754 VL: 48000

to be honest i cant remember much else the doc said after this, my mind is a mess with worry and I cant help feel down about everything, steve is the strong one and he is being my rock I suppose.

im not entirely sure what the results mean really, i know we dont need meds yet so thats good I suppose.
im just in such mental turmoil, I have told my mum and she has been awesome, she said that god must want steve and I to be together so much that this was the way to keep us strong, I know the thinking behind what she said, personally I feel like im being punished, hell I must have been such a bad person to have been given this eh.

sorry for unloading, I just dont have anyone else to unload at.
so apologies in advance
Angelx

Offline atlq

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Re: new and first results
« Reply #1 on: August 14, 2008, 10:18:09 PM »
Angel,

Welcome to the forum. With both of you having your diagnosis only 2 1/2 weeks ago, feeling like shit is understandable. But it is great that you you are reaching out to others already. This forum is a great place to do that.

A good place for you to start is the Welcome Thread.

It contains links to a lot of the lessons on the site.

Both of your numbers are good. While one test doesn't tell you anything, it is quite possible that it will be some time before either one of you need to think about meds.....

And don't worry about unloading. That's one of the reasons we are here.

Take care.... :)
“Keep up the good work....   And God bless you.”
  --  Sarah Palin, to members of the Alaskan Independence Party, 2008

Offline BT65

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Re: new and first results
« Reply #2 on: August 14, 2008, 11:22:45 PM »
Angel, welcome to the forums.

Your test results look good.  Your immune system seems to be functioning pretty normally.  That's a really good thing.

None of us did anything to "deserve" having this disease.  It's just something that happens.  It's just a virus.  Have you ever had the flu, chicken pox, etc?  I know, HIV can be more serious, but I'm trying to keep things in perspective for you.  You're not a bad person.  Could you condemn someone else in your situation?

I'm glad you've got your boyfriend and mum for support.  My family is supportive also.  Both my parents died, though, between August of last year and March of this year.  I really miss my mum (of course I miss my dad, but my mum and I were extremely close).  I tested positive in 1989, so I'm pretty sure you'll be around for a long while. 

You might want to contact (if you haven't yet) your local ASO (Aids Service Organization) and ask if they have a support group you could attend.  That would help you get acquainted with other HIV+ people so you wouldn't feel so alone.  And should ever the need arise for a therapist, the ASO could give you the name of one who's familiar with treating people with HIV. 

Keep in touch and let us know how you're doing.
  Luv,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Andy Velez

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Re: new and first results
« Reply #3 on: August 15, 2008, 08:58:08 AM »
Hi Angel,

Having turbulent feelings of all sorts is pretty much par for the course at this point. The shock is still very new for you. Gradually you're going to get adjusted to having HIV in your life, and you're also going to see that life is going to go on. Sure there will be some changes, but you'll be ok. And you'll learn everything you need to in order for you (and Steve)  to stay healthy.

It is important that you have a doctor you can form a good partnership with to keep you healthy and who will regularly monitor your numbers.

Give yourself time to get adjusted. You may find the lessons on this site helpful in sorting things out. And of course you are always welcome here to ask questions as well as to discuss anything that's on your mind.

We're glad you found your way to our site. Welcome!

Cheers,
Andy Velez

Offline daisychain

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Re: new and first results
« Reply #4 on: August 15, 2008, 11:23:24 AM »
thanks everyone, I do have lots and lots of questions.
steve and I are going to sit down tonight and try and write a list of things we want to know or that are worrying us (well me mainly im the worrier)

I think everyone is mainly from the USA unless im wrong, but is it ok that we are from the UK that we post on here, I couldnt really find many UK based forums.

many thanks again
angelx

Offline BT65

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Re: new and first results
« Reply #5 on: August 15, 2008, 12:11:13 PM »
Steve, we have posters from all over the world.  Of course it's alright for you (and/or Steve) to post here.  I'm not familiar with organizations in the U.K. for people with HIV, but I'm sure someone else who posts on these forums is.  If you have any questions about that, you may want to post something in the "Living With HIV" part of the forums.  More people read the posts there.
  Luv,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Surviving

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Re: new and first results
« Reply #6 on: August 15, 2008, 12:51:18 PM »
you should be taking meds at this time.

the meds will begin to decrease the viral load to undectable stage, whereas the virus cannot be detected.  so instead of posting a number indicating thousands, it should be a number like 1.

however, the virus is always present somewhere in the body reading to regain footing if the meds are no longer present in your system.   further, different people carry different strains of the virus and have become resistant to some of the meds.

secondly, by taking the meds as soon as possible, your immune system will not be burdened as well.   it takes a very long time to bring the immune system back up and for many of us, it will never be as strong as it was before being infected.

so it is unclear as to why there is a beleif that you don't need meds now.

Offline RapidRod

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Re: new and first results
« Reply #7 on: August 15, 2008, 12:57:01 PM »
Surviving, steveangel do not need to start medication at this time. They don't meet the guidelines as for the need of medication. There has never been any proof of taking medication this early has any benefits.

Offline daisychain

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Re: new and first results
« Reply #8 on: August 15, 2008, 01:01:26 PM »
our doctor said we dont need to start taking meds yet until our CD4 drops to 350 or below.
its all so confusing, he said if we start taking meds now our bodies could become resisliant to it and therefore when we really do need it we will be stuffed so to speak.

is this correct information?

angelx

Offline RapidRod

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Re: new and first results
« Reply #9 on: August 15, 2008, 01:07:19 PM »
Yes that is the correct guidelines. Hopefully you won't need them for several years.  ;)

Offline daisychain

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Re: new and first results
« Reply #10 on: August 15, 2008, 01:32:35 PM »
thankyou Rapidrod, we are fingers crossed we dont need them for a hell of a long time.

angelx

Offline Surviving

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Re: new and first results
« Reply #11 on: August 15, 2008, 04:59:57 PM »
well i hope you get more information. 

the virus is the issue and the meds are for the virus.   the virus you have now will only increase using the same genetic code.  so the meds taken now or taken later will do the same job, that is to keep the virus level to an undectable levels.

if the data you were provided was true, then all of us with an undectable virus and a cd4 that has increased well over 400 would be told not to take the meds we take now.

allowing the viurs to progress and survive at the expense of the cd4 is "unwise".

Offline RapidRod

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Re: new and first results
« Reply #12 on: August 15, 2008, 07:06:24 PM »
Surviving, don't be giving out incorrect information. There numbers are good and no ID doctor will start them on medication with those types of numbers.

Offline Ann

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Re: new and first results
« Reply #13 on: August 15, 2008, 07:36:34 PM »
well i hope you get more information. 

the virus is the issue and the meds are for the virus.   the virus you have now will only increase using the same genetic code.  so the meds taken now or taken later will do the same job, that is to keep the virus level to an undectable levels.

if the data you were provided was true, then all of us with an undectable virus and a cd4 that has increased well over 400 would be told not to take the meds we take now.

allowing the viurs to progress and survive at the expense of the cd4 is "unwise".

NO Surviving, "all of us with an undectable virus and a cd4 that has increased well over 400 would be told not to take the meds we take now" is NOT TRUE.

Once a person reaches the point where medication is necessary, according to the guidelines, then it is recommended they STAY on the meds. If they were to stop when their CD4 count went over the recommended start-treatment level, their numbers would (fairly quickly in most cases) revert to a level where treatment was once again necessary.

Some people's bodies can deal with the virus on their own for longer than others. However, once the body starts to lose the fight, it normally doesn't regain the ability. As long as the body is doing well (evidenced by good numbers without treatment) there is no reason to initiate treatment. Once the body starts losing the fight, medication becomes necessary.

Angel and his partner both have bodies that are doing well on their own, without meds. And long may it continue that way for them.

Ann
(11 years poz, still no meds, still healthy with good numbers and no intention of starting until necessary)
Condoms are a girl's best friend

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"...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 Lungpoz

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  • Hanging in there - life and more
Re: new and first results
« Reply #14 on: August 15, 2008, 07:49:13 PM »
Greetings Angel and Steve,

It is understandable about being in shock.. It took me a couple of months before I could get my head wrapped around being poz. Many bad dreams about it. Fortunately I have a wonderful partner and found local and online people who I could talk with. You will be suprise what you will find around you.

I am sort of jealous about how low vl /high cd4 your initial results are. (lol) I agree you should listen to your doctor(s) about when to take meds.  

I had a near terminal case of bronchial pneumonia last winter before I found out about being poz.  My initial counts were 1.6 million vl and 18 cd4. I was placed on meds almost immediately. That was 6 months ago... Now I am at >40 vl -(undetectable) and 178 cd4. Things are good now. 

I have been informed by my doctors that now I am on the meds, it is for life. Sort of life long contract between me and hiv.

My best advise is to: Eat right, take care of yourselves and become more centered on the rest of your life.

Offline daisychain

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Re: new and first results
« Reply #15 on: August 15, 2008, 08:07:22 PM »
hello

many thanks to rapidrod, ann and lungpoz for the recent posts.
Surviving I appreciate you have your own views, but we are going to stick with what the doc says afterall he knows a heck of alot more than us.

oh and we are a hetro couple, i guess i wasnt clear. Not that it matters so much lol.
angel = female
steve = male.

angel x

Offline Ann

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Re: new and first results
« Reply #16 on: August 15, 2008, 08:10:04 PM »
Hello Angel=female, welcome to the forums! ;D  ;)
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 daisychain

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  • Posts: 27
Re: new and first results
« Reply #17 on: August 15, 2008, 08:16:37 PM »
Hi ann,

im so glad to see another girlie.
im fingers crossed we cope with this aswell as you are.
i want to say well done, but dont think thats the right thing to say, but i guess you know what i mean.

angelx

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: new and first results
« Reply #18 on: August 15, 2008, 08:34:12 PM »
Angel, there's tons of us female-types in the Women's Forum. Join in!
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 BT65

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Re: new and first results
« Reply #19 on: August 15, 2008, 09:35:17 PM »
Yes Angel, please do join us in the women's part of the forum.  We usually do our daily chatting in a thread entitled "Ladies Thread..."   That's where we talk about our struggles, concerns, little victories, how we're doing and support each other.  If anything female comes up, it's so easy to chat about it there.  We'd love to have you! :)

Oh, and welcome lungpoz.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline sanitex

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  • Posts: 382
Re: new and first results
« Reply #20 on: August 16, 2008, 07:15:37 AM »
Hi Angel and Steve
                            Wellcome to this forum,my encouragement to both of you is do not bother yourselfs too much about been hiv + when i first diagonised last december i feel like i not reach upto today but with the help of our God and peoplle in this forums just breath in and out that you'll be ok.this's UK sight for hiv suport online Q and A(www. i-base-info)and this's there online phone no(HIV i-Base 3rd Floor East,Thrale House, 44-46 Southwark Street, London, SE1 1UN. T:+ 44 (0) 20 7407 8488. F:+ 44 (0) 20 7407 8489. admin@i-hope this will help  thanks and take care
27/12/07 cd4 20 vl 1million
10/4 /08 cd4 86 vl 63
1/7/08  cd4 186 vl undetectable
16/10/08 cd4 196 vl undet
23/1/09 cd4 248 vl un
10/9/11 cd4 418 vl <40 %22
13/12/11 cd4 410 vl undet 23%
24/2/12 cd4 545 vl undet 26%
on 22/2/12 change truvada to Recovir-EM
due to no stock on Truvada.
10/9/11 cd4 418 vl <40 %22
7/7/12 cd4 359 vl <40 22%
23/8/12 cd4 400 vl <40 23%,
testosterone test 7.5 ng/ml and
thyroid (TSH)1.32 ulu/ml creatinine.eGFR blck 1.5 all fasting test morning.
13/12/2012 cd4 523 24% vl <40
18/3/2013 cd4  513  23% vl <40
regimen ATRIPLA
03/8/2013 cd4 429 22% vl <40
13/11/2013 cd4 455 23% vl <40
Anti-HBs test (quantitative ) Anti-HBs positive
Titer 16.95 mlu/ml <10.00
22/3/14 cd4 396 vl <40 % 24

Offline Surviving

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Re: new and first results
« Reply #21 on: August 16, 2008, 02:04:35 PM »

Some people's bodies can deal with the virus on their own for longer than others. However, once the body starts to lose the fight, it normally doesn't regain the ability. As long as the body is doing well (evidenced by good numbers without treatment) there is no reason to initiate treatment. Once the body starts losing the fight, medication becomes necessary.


If the virus is increasing and the cd4 is decreasing, this is a sign that the virus is overpowering the system.   The virus is a killer and has no mercy.  Therefore it should be attacked as soon as possible.   

In regards to your claim of being positive for 11 years and no meds, this is not easily proven over the internet.   However there are people who are immune to the virus because their ancestors survived the black plague infection centuries ago and developed.

Screw the guidelines.  It's their lives that is under attack by a killer virus.  And for anyone to let angel/steve to beleive that they will be just fine without the meds and it is best to let the killer virus replicate all it wants inside the body, is lying to them.   If they tell their doctor they want to start the meds, I bet the doctor will begin the regiman.   

Offline Surviving

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Re: new and first results
« Reply #22 on: August 16, 2008, 02:33:29 PM »
Surviving I appreciate you have your own views, but we are going to stick with what the doc says afterall he knows a heck of alot more than us.

Actually, you should not believe this.  Doctors are "practicing" medicine.  It is your responsibility to take charge of your treatments and your health.   If you demand the doctor to begin the regiman of medications, the doctor will either do it or deny it.   There are doctors who will not listen and then there are those doctors that will "agree and support you" if you want the medications.   Likewise, if you don't want meds, then no one will force you to take any.

I cannot provide emotional support because it is physically impossible to do so over the internet.  But I can tell you this, the virus has no mercy and neither you or yours are super beings able to fight it.    The sooner you begin to kill the virus the less risk you place on your whole system by not having a failing and burdened immune system.

I've said my peace and offerred some advice.   Good Luck....!

Offline atlq

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Re: new and first results
« Reply #23 on: August 16, 2008, 03:09:02 PM »
Angel,

Recently revised guidelines indicate the need for ARV treatment before a person's Cd4 falls below 350, to get the greatest immune response and avoid complications.

http://www.medscape.com/viewarticle/578530


Initiating therapy when your cd4 count is higher than this is indicated only when the viral load is greater than 100,000 or the cd4 loss is 100 or greater a year.


Neither you nor Steve are currently at that point. Have your cd4's and VL checked every 3-4 months, eat well , exercise, and educate yourselves. 

And Surviving, while none of us are "super beings" , many people have lived with HIV and med free for many years.

 

edited for typo...
« Last Edit: August 16, 2008, 07:20:33 PM by atlq »
“Keep up the good work....   And God bless you.”
  --  Sarah Palin, to members of the Alaskan Independence Party, 2008

Offline BlueMoon

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Re: new and first results
« Reply #24 on: August 16, 2008, 03:25:40 PM »
Angel and Steve, welcome to the forum.  The diagnosis is hard for all of us at first, but gets easier as you learn more.  I hope that you will find some answers to your questions here. 

Quote
In regards to your claim of being positive for 11 years and no meds, this is not easily proven over the internet.

Indeed, for all I know "Ann" is a fourteen year old boy fooling around on his parents' computer while they're at work.  But what she has posted is true in essence, and well-established in the literature.  Many people are able to safely avoid meds for a decade or two.

While the virus is a killer, the meds are not exactly benign.  I now have to have my liver, kidneys, and cholesterol monitored regularly, and at my last blood test I showed signs of hyperglycemia that my doctor feels is a result of the meds and could eventually result in diabetes.  And that's after only five months. 

In addition, meds "wear out" -- that is, the virus develops resistance.  Delaying treatment while the body fights the virus on its own allows the maximum drug options over time.
...................VL.....CD4.....%
-----------------------------------------
08/10-- ......<40.....290.....42
05/10-- ......<48.....290.....46
02/10-- ......<48.....481.....44
10/09-- ......<48.....277.....46
07/09-- ......<48.....300.....38
05/09-- ........51.....449.....39
03/09-- Added Isentress
02/09-- ........65.....299.....34
11/08-- ........62.....242.....40
08/08-- ........66.....212.....29
05/08-- ......202.....217.....27
03/08-- ....5210.....187.....21
02/08-- Began Truvada/Reyataz/Norvir
12/07-- 273,000.....157.....22
11/07-- 229,000.....209.....22
10/07-- Diagnosis

It's a complex world.

Offline Ann

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Re: new and first results
« Reply #25 on: August 16, 2008, 03:55:08 PM »
Surviving,

Are you accusing me of lying about being 11 years positive, healthy and in no need of ARVs yet? Whatever mate, it is what it is.

After looking over your posting history, anyone who'd take medical advice off someone who advocates daily use of MDMA (aka xtc or E) is probably already doing so.  ::)

Ann


edited to fix a boo-boo
« Last Edit: August 16, 2008, 03:57:45 PM by Ann »
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 BT65

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Re: new and first results
« Reply #26 on: August 16, 2008, 07:18:37 PM »
After looking over your posting history, anyone who'd take medical advice off someone who advocates daily use of MDMA (aka xtc or E) is probably already doing so.  ::)
Ann

Ah, now I remember where I've seen your lunatic postings, Surviving.  Xtc as a cure for things?  Heh.  Anyone who listens to Surviving's advice needs to have their head examined, and quickly.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Ann

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Re: new and first results
« Reply #27 on: August 16, 2008, 07:57:55 PM »
 

Indeed, for all I know "Ann" is a fourteen year old boy fooling around on his parents' computer while they're at work. 

Blue Moon,

You saw me standin' alone, without a dream in my heart, without a love of my own. Blue moon, you know just what I was there for, you heard me saying a prayer for, someone I really could care for.

Oops, sorry, I always get side-tracked when I see your user name.

Anyway, I WISH I were a fourteen year old boy. Think of the endless hard-ons! Think of the lack of fiscal responsibility! Think of the sense of invincibility!

It's tough being older and wiser and financially responsiblererer.

~sigh~

Ann
(who might be Dan in a 14 y/o male incarnation)
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 smalltown66

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Re: new and first results
« Reply #28 on: August 18, 2008, 10:43:36 AM »
AngelSteve,
One positive point to make is that there are many drugs on the market now that keep HIV at bay. Look at this disease as just a personal struggle or a chronic condition. Ther is lots of hope for HIV folks these days. Many are living long healthy and happy lives.

You have began your journey correctly by finding support and others hat have been through what you are goin through. This forum will help in so many ways. Keep thinking positivley about your future.

We are all in this together. We can help one another

Smalltown66
Lifting the weight of the world sure is easier with others with the same goal.

Offline RapidRod

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Re: new and first results
« Reply #29 on: August 18, 2008, 06:14:35 PM »
Surviving, I didn't take meds for 21 years. Do you know what a LTNP is? More than likely not.

Offline derek72

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Re: new and first results
« Reply #30 on: August 20, 2008, 01:21:11 AM »
Hello,

I just wanted to add my own two cents here.

There is study evidence that supports the theory that early medication helps the body to set its "viral set point" (the point where you body can control HIV) at a much lower level that it normally would without medications, hopefully leading to long term non progression.

I joined just such a study @ NYU and after the next 11 months or so we will wait to see just what the introduction of early medications has done to my body's ability to fight the virus.  My treatment was started very, very early.  In fact I was so acutely infected that I was still testing negative with the rapid tests.  I had been on meds about two weeks before my first + test appeared and was then confirmed.  So with someone like me the results might be wonderful but also they will help provide vital research information on the true effects of early medication.  There is still so much that is not known.

I am very optimistic and looking forward to not having to gulp down a handful of pill once a day....I know I know-so many of you remember handfuls of pills several times a day.  I will say that over the course of my first two weeks, I had a 100,000+ viral load and within a week and before the first pill, my body had pounded the virus to less than 4,000.  A very strong immune reaction indeed. I am waiting for my labs to see where I stand now, a full month into treatment.  Undetectable is just around the corner...

Just wanted to share my opinion on early medication.

Cheers,
Derek





Derek

Offline daisychain

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Re: new and first results
« Reply #31 on: August 20, 2008, 03:40:14 AM »
this is all so confusing.

isnt long term non progression when you have the virus but you havent needed to take any drugs?#

also how did your viral load start off so high if you were only just infected.

im not having a dig, i just am getting so much confilicting information.

many thanks for the info
angelxx

Offline loop78

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Re: new and first results
« Reply #32 on: August 20, 2008, 04:00:31 AM »
There is study evidence that supports the theory that early medication helps the body to set its "viral set point" (the point where you body can control HIV) at a much lower level that it normally would without medications, hopefully leading to long term non progression.

Derek, it is my understanding that though nothing is still proved, one way or another, there are cohort studies that have found no significant difference in clinical, immunological o viral response between those who started HAART during acute infection and those who did it according to current guidelines. I may be wrong, though.

Anyway, I think that we should limit ourselves to already established data when informing newbies, just to avoid confusion caused by seemingly conflicting information.

this is all so confusing.

isnt long term non progression when you have the virus but you havent needed to take any drugs?#

also how did your viral load start off so high if you were only just infected.

Angel, Long Term Non Progression is more or less what you have said: being able to keep in check the virus without it degrading your immune system for a long time without the aid of meds.

Regarding your question about viral load, during the acute infection period, just after being infected, viral load skyrockets. Afterwards (around 6 months post infection), when your body has already armed its immune response, it tends to go down to what it's called a "viral setpoint", that tends to be relatively stable throughout the asymptomatic phase.

Hugs!

Offline BT65

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Re: new and first results
« Reply #33 on: August 20, 2008, 09:52:47 AM »
Derek, it is my understanding that though nothing is still proved, one way or another, there are cohort studies that have found no significant difference in clinical, immunological o viral response between those who started HAART during acute infection and those who did it according to current guidelines. I may be wrong, though.

I agree.  Let the experts decide with each case what is needed.  No one here is a doctor or should advise like one.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline derek72

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Re: new and first results
« Reply #34 on: September 03, 2008, 07:21:57 PM »
In no way was I advising anyone of anything - I was telling my experience with early medication and why I was taking it.

Derek

 


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