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Author Topic: Advice: Newly Diagnosed, About to Start Treatment  (Read 4928 times)

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Offline lawrence03

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Advice: Newly Diagnosed, About to Start Treatment
« on: June 27, 2010, 12:53:37 PM »
So I was diagnosed early, my doctor and I recognized my seroconversion as it was somewhat severe and peculiar. Anyways I found out May 27th and now today I am facing the decision to take the meds (truvada/isentress). I'm 24 years old and this whole thing is just a lot to deal with all at once, but my numbers are kind of bad. My initial viral load was 6 million, followed by 2 million, followed by 155k (14 days apart). My first CD4 was 218 followed by 300. My question is why are my numbers so bad? Does this mean I got a violent strain, is it just because I caught it so early and the numbers are on the rebound from seroconversion? All the information I find is about numbers during the asymptomatic phase, but no info about numbers when you are serconverting.

I'm just wondering should I just take the plunge are start the meds or what are the odds that my numbers improve dramatically in a couple of months?

I just thought from everything I read that cd4 levels weren't supposed to be this low until the end and I was just recently infected.

So if anyone has advice or could share what kind of numbers they had during seroconversion and then after...

Offline tommy246

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Re: Advice: Newly Diagnosed, About to Start Treatment
« Reply #1 on: June 27, 2010, 01:32:06 PM »
Hi there im no expert but its quite normal to have a very high viral load initially that your body then starts to fight and bring it down as is happening in your case. if you have only just seroconverted its always best to wait and get at least two or three blood tests to see a pattern emerge also your cd4 has risen which is good. Most people are fine for may years after initial infection and only start meds when required.
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND

Online Miss Philicia

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Re: Advice: Newly Diagnosed, About to Start Treatment
« Reply #2 on: June 27, 2010, 02:30:06 PM »
This will give you an idea of what your numbers do right after infection in terms of cd4 and viral load in the absence of HIV meds.

« Last Edit: June 27, 2010, 04:39:23 PM by Miss Philicia »
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Offline eric48

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Re: Advice: Newly Diagnosed, About to Start Treatment
« Reply #3 on: June 27, 2010, 04:34:22 PM »
Hi,

Like yourself, I am new to this and had to do some research...

Like yourself my seroconversion was BAD. Went 3 times to the doctor who diagnosed NOTHING.
Took me 3 month of Internet and self scrutinizing to even consider the possibility that...
And another 3 months to get tested

If you seroconverted recently, your dynamics are on a different pattern from most people: you are in a (partially) recovering phase while most people (myself included) are in a steady  or declining phase

Numbers, therefore have a different meaning.

Things to consider are:
- if your seroconversion was hard on you, then , most likely your immune system has been severely damaged
- In the pre-HAART times a 'bad' seroconversion was considered as a sign for faster progression

The GOOD news is:
- you are young
- you have a doctor that follows you closely (at least a better than my -previous - doctor, now fired)

With regards to your future there are only 2 things of importance:
- when to start the meds (now or later 1 year, 2 years, more, but most likely NOT never
- what meds

What meds is to be decided by your doctor after careful consideration of:
- your personal data (cholesterol, diabetes, etc., but remember here that you are young so this is less of a concern)
- the drug resistance test (genotyping)

So you should cool down and bear in mind that the dynamics are in your favor (since diagnosis was made early):
- you may still be in the recovery phase
- the meds (if used) act faster upwards than the virus pulls you downwards

I am exactly twice your age. If I had been infected when I was 24, well, my chances, may have been very slim

Being infected at 24 in 2010 is bad news, but the chances that you may somehow manage the virus and live a 'normal' life are quite high

Me, I have a residual anxiety, because when I was your age, the prognosis was almost a certain death (and not the nicest)

Even today, after reading all the good news about the meds and progress, I still have those uncontrollable fears and I collapse about once a week (out of stress)
but in the deep of my mind I know that I will be OK and YOU will be OK as well

Take care of yourself

Eric 
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 2 months

Online mecch

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Re: Advice: Newly Diagnosed, About to Start Treatment
« Reply #4 on: June 27, 2010, 05:51:48 PM »
Lawrence sorry to hear about your serocoversion, and that it was severe to boot.

Your viral load dropped pretty dramatically already.  You might see a rebound of CD4 soon enough.  What does your ID say.  He/she is already recommending HAART?  Or is it your choice to perhaps start?

What country do you live in?  Here in Switzerland some cantons have doctors recommending HAART anytime HIV infection is identified.  Others are more with the general protocal that says wait a bit to see how it all shakes out.

How do you feel now?  If you feel pretty recovered from the serocoversion, you might want to wait out the acute phase for a bit to see if you are ready to start HAART, or even need it.

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

Offline lawrence03

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Re: Advice: Newly Diagnosed, About to Start Treatment
« Reply #5 on: June 28, 2010, 01:14:17 AM »
Thanks everyone for the advice, it means a lot that you would take the time to explain these things to me.  To mecch my doctor has recommended that I start truvada/isentress, I've filled the prescription, but have not begun to take the treatment yet as I am afraid of side affects and in the middle of some intense interviews at work.

It just seems from the research everyone is beginning to say that the sooner you start haart the less damage it will do to your immune system.  I had the genotype testing done and I don't have any drug resistance currently which is good.  I feel like the sooner I get my viral load down the better I will be down the road?

Offline eric48

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Re: Advice: Newly Diagnosed, About to Start Treatment
« Reply #6 on: June 28, 2010, 04:02:24 AM »
The general opinion is that the earlier you start the better.

What is true in general and guides most professional (doctors...) may not be true as an individual.

It all depends on the dynamics

Let's take an example:
I am 48; 10 month into the infection CD4 , CD4% VL have stabilized and show that, although in the safe zone, the immune system was been hit pretty hard.
With my age and CD4 450 CD%18 VL 60k, stats as well as going through the forum shows that  deterioration is likely in the next 2-3 years.
Why wait then ?... If things work out for me the future **might** be CD4 750 CD%40 VL UD and a accumulated viremic activity of 10 month x 60 k : so it is not that bad
Lowdown: side effects (if any), one med option is already consummed (resistance **may** develop). weighting pros ans cons: I decided to go with the meds with a small margin (had I been given more time, I might have decided otherwise...)

Let's take the example of a young individual (who has a mild damage or had a good recovery)
Age 25, CD4 700 ; CD% 35 VL 5k
benefit of taking the meds:
CD4 1000 ; CD% 55 VL UD

cumulated viremic activity of years x 5 k ...
Lowdown : side effects (most likely none, because an healthy individual may fare better), one med option consummed (but other options are left, but life ahead is long too)

If I where this individual, I would wait.
Wait t cool down, wait to prepare myself, see what scientific progress may yield ...
And I would be super extra carefull (no over infection needed, see what I mean?)

At this point, you are not providing important data such as CD%, etc.
(please bear in mind that should your CD4 exceed 500, the CD% may be a better indicator than CD4)

Currently the stats (hence, the medical system and especially a young doctor - an older doctor may be able to sense this better because he knows more no-meds cases) are pretty much in favor a
a severe to moderately severe damage on you.

But you are YOUNG. Life has an enormous drive towards life. HIV impairs that, but still...

In your case (and confirm this with your doctor), waiting a few months (say 2-3) to see how your body responds will not hurt:
- you are not going to suffer OI (or  if so , you have a good doctor, so it should be fine)
- staying under viremia for a few month is definitively not the same as staying under viremia/inflation for many years (as is the case for some of the lucky, older individuals that are still around in the forums and stats)

If I were you, I'd wait to see if I break the CD4 500 threshold
If so, I would see if CD4% is above 25 or better 30
if so, I would then see if VL is below 1k

If I where you, I would consider to wait for the only benefit of knowing my body better.
Once you are under meds you loose the opportunity to learn your immune system dynamics.

The virus infects your blood, but also reservoirs (that have so far been elusive, they do not know where that they are, but they are)
One benefit of starting early nonetheless, is that the virus may be stored in reservoirs in lesser quantity which, on the long run will be a great advantage.

one last thing, whether you wait or not: you have been infected. This is to you a clear demonstration that shit happens.
Shit may happen twice: you may catch some other nasties VHC, ... or , worse, give it to somebody

Ask your doctor if I&T reinforced with Maraviroc could be of interest:

see:
http://clinicaltrials.gov/ct2/show/NCT00808002

Also be carefull with stats: they show that a higher Nadir is better than a low Nadir (Nadir refers to your lowest CD4 count before starting the meds). These stats have a overhealming majority of people whose nadir was measured during the decline period , not in the recovery period as yourself!

take care and keep us posted !

Eric


 



   
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 2 months

Offline lawrence03

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Re: Advice: Newly Diagnosed, About to Start Treatment
« Reply #7 on: June 28, 2010, 04:28:39 AM »
My initial diagnosis occurred from testing that was done about 10 days into the first symptoms of seroconversion where my viral load was confirmed at 6 million.  The next test about a week later showed a viral load of 2 million and 218 cd %11.  Then a week later 155K, 300 cd4 with 14%.  Honestly these numbers just scare and confuse me, I've had trouble making sense of them and don't know whether to contribute them to a violent strain of the virus, or to simply stumbling upon my diagnosis quite early. The clinical trial you mentioned says its in Spain; are they doing it in the U.S. as well?  (I'm in la)  Also you mentioned nadir, I've never heard this term before.  Does this mean I should wait for my recovery to stabilize before starting treatment?

Online mecch

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Re: Advice: Newly Diagnosed, About to Start Treatment
« Reply #8 on: June 28, 2010, 06:21:32 AM »
The general opinion is that the earlier you start the better.

This is NOT the "general opinion". 

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

Online mecch

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Re: Advice: Newly Diagnosed, About to Start Treatment
« Reply #9 on: June 28, 2010, 06:29:42 AM »
My initial diagnosis occurred from testing that was done about 10 days into the first symptoms of seroconversion where my viral load was confirmed at 6 million.  The next test about a week later showed a viral load of 2 million and 218 cd %11.  Then a week later 155K, 300 cd4 with 14%.  Honestly these numbers just scare and confuse me, I've had trouble making sense of them and don't know whether to contribute them to a violent strain of the virus, or to simply stumbling upon my diagnosis quite early. The clinical trial you mentioned says its in Spain; are they doing it in the U.S. as well?  (I'm in la)  Also you mentioned nadir, I've never heard this term before.  Does this mean I should wait for my recovery to stabilize before starting treatment?

There isn't anything about your numbers, compared to other peoples numbers in seroconversion, that is scary, in my opinion.

I would guess its being suddenly HIV+ and having to make sense of all this info that is scary and confusing.  Only natural,  ::)

I think a moderator or some experienced members will jump in soon and make some recommendations about what to read on this forum.

In fact, I'm sure the "general protocol" is waiting to see how your numbers settle down during the acute phase, which lasts a few months, before planning on HAART (tri-therapy).

So if we learned that there is some individual concern, by yourself or your doctor, we could give more individual feedback.   Might help if you report in your doctor's opinion about your numbers and why you already have a HAART regime selected.  Why this worry about some sort of "violent strain"?

Best to you!

« Last Edit: June 28, 2010, 06:36:35 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Ann

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Re: Advice: Newly Diagnosed, About to Start Treatment
« Reply #10 on: June 28, 2010, 09:58:00 AM »

Things to consider are:
- if your seroconversion was hard on you, then , most likely your immune system has been severely damaged
- In the pre-HAART times a 'bad' seroconversion was considered as a sign for faster progression



Not necessarily true.

I had a horrendous seroconversion - I've never been so sick in my entire life. That was thirteen years ago this past May (1997). I'm fine and my numbers do not yet indicate a need for the meds. That's right, thirteen med-free years and I'm healthy with good numbers.

Lawrence, you too might be able to go for years without meds. It's something you're going to have to read up on and discuss with your doctor. So far your numbers are going in the right directions. They are entirely typical of numbers in primary infection.
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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

Online Miss Philicia

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Re: Advice: Newly Diagnosed, About to Start Treatment
« Reply #11 on: June 28, 2010, 10:02:17 AM »

- In the pre-HAART times a 'bad' seroconversion was considered as a sign for faster progression


I've never heard of this in my entire life.  Sounds like an old wive's tale.
"I’ve slept with enough men to know that I’m not gay"

Offline Billy B

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Re: Advice: Newly Diagnosed, About to Start Treatment
« Reply #12 on: June 28, 2010, 11:00:05 AM »
Thanks everyone for the advice, it means a lot that you would take the time to explain these things to me.  To mecch my doctor has recommended that I start truvada/isentress, I've filled the prescription, but have not begun to take the treatment yet as I am afraid of side affects and in the middle of some intense interviews at work.

It just seems from the research everyone is beginning to say that the sooner you start haart the less damage it will do to your immune system.  I had the genotype testing done and I don't have any drug resistance currently which is good.  I feel like the sooner I get my viral load down the better I will be down the road?

lawrence03- Good you have your meds! Try and schedule yourself a vacation before you start and then just do it. That way you will have a reserve of meds so you don't have to worry about getting your refills done on an exact schedule. I waited three weeks after I got mine before I started and I had taken a week off from work for adjustment. After my Atripla beatdown, I wanted to allow enough time for my body to settle down on the I&T. Well, I had no sides from the I&T and I went to the beach on the third day of treatment for the rest of my vacation. I now have a 3 1/2 week reserve of meds so I don't have that anxiety of rushing to the Rx.
Peace,
Billy
VL 4420 CD4 340 CD4% 24   3/15/10 Started I&T
VL  UD   CD4 340 CD4% 26.5 05/13/10
VL  UD   CD4 360 CD4% 27.1 08/3/10
VL  UD   CD4 310 CD4% 28.4 11/22/10
VL  UD   CD4 420 CD4% 27.9 02/11/11
VL  UD   CD4 370 CD4% 26.4 06/08/11
VL  UD   CD4 360 CD4% 27.7 09/23/11
VL  UD   CD4 370 CD4% 28.3 01/20/12
VL  UD   CD4 430 CD4% 28.8 05/11/12
VL  UD   CD4 370 CD4% 28.1 09/07/12
VL  UD   CD4 390 CD4% 32.3 03/14/13

Offline aztecan

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Re: Advice: Newly Diagnosed, About to Start Treatment
« Reply #13 on: June 28, 2010, 11:14:31 AM »
I've never heard of this in my entire life.  Sounds like an old wive's tale.


Actually, I had heard this years ago. But, it doesn't always hold true. If my seroconversion occurred when I think it did, it landed me in the hospital with a diagnosis of viral meningitis, which is pretty severe.

But I didn't progress more rapidly as a result.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline lawrence03

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Re: Advice: Newly Diagnosed, About to Start Treatment
« Reply #14 on: June 28, 2010, 01:21:17 PM »
Well my doctor thinks that with my numbers where they are at (even though it seems they are on a rebound) that there is really no reason to delay treatment.  He believes that the sooner the better as far as immune damage.  I also think since he can put me on a treatment that has virtually no side effects (truvada/isentress) he is even more anxious for me to start.  I really do trust my doctor and he is in a medical group that specializes in hiv. 

However, I believe getting the opinions of people who have gone through this before me is invaluable. 

Do you guys really see any point in waiting?  Does it benefit me at all to see where the rebound will go to?  It seems somewhat evident to me with the way my numbers started I'm looking at meds within two years at best so why not just start right now when I have a treatment option that seems to be well tolerated?

I want your critical feedback to ensure I am indeed making the right decision.

Also does anyone have info about their numbers during seroconversion versus after stabilization?  I'm still wondering how my numbers are in comparison to the "norm"  Its just that all the info about numbers is after seroconversion.

Online mecch

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Re: Advice: Newly Diagnosed, About to Start Treatment
« Reply #15 on: June 28, 2010, 03:30:27 PM »
Lawrence, a couple of experienced members have just responded to tell you that there is a point in waiting.  You are making assumptions:  such as that in "two years at best" you will be ready for HAART.  Not true, in many peoples experiences.

However, as you have explained, your doctor belongs to the "treat right away" camp.  I know that in Geneva, HIV specialists are more inclined to this view, as well. But its hardly the norm. Most HIV docs look at the 350-500 CD4, in combination with the trend in viral load, and of course how the person is feeling without HAART.  

Keep in mind that even though a HAART combo like Truvada Isentress is so well tolerated, it is still HAART, not really a light regime like taking a vitamin after all, and once you start, again the general rule is that you continue. So it is a commitment, and you may not need to make it now. HIV+ people nowadays who are deciding not to start HAART are taking a conservative option, sparing their bodies of many many years of HAART, until they need it.  

This "immune damage" you are talking about is very complex. I hope you can have some good talks with your HIV specialist so he can explain the advantages and disadvantages of waiting.

If you look at a people's tag lines when they post, you will often see stats about numbers.

"I'm still wondering how my numbers are in comparison to the "norm"  Its just that all the info about numbers is after seroconversion."

Again, look at the chart, and listen when people tell you - your seroconversion numbers are quite standard.  

You can't know the trend unless you wait it out.  But if you don't want to wait it out, that's your choice of course.  

« Last Edit: June 28, 2010, 03:31:59 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Ann

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Re: Advice: Newly Diagnosed, About to Start Treatment
« Reply #16 on: June 28, 2010, 05:04:55 PM »

Well my doctor thinks that with my numbers where they are at (even though it seems they are on a rebound) that there is really no reason to delay treatment.


But he's not the person who has to take them every day, adhering to a fairly strict timing and as few missed doses as humanly possible. You need to be psychologically ready to commit to the meds - and they are a big commitment.

You also have to consider that treatment is very, very expensive and in the USA, your continued insurance coverage is not guaranteed. Many people on meds end up with very little money. 

And you also need to consider that yes, many of the newer meds seem to be pretty much side-effect free, but we have no idea what the long-term picture is going to be.

I'm not telling you to not start treatment, but I am asking you to carefully weigh it all up. You haven't been monitoring your numbers and health long enough to make any kind of predictions about your future with hiv - and you could very well have many med-free years ahead of you. But once you start meds, you're stuck with them. Remember, I've had thirteen years med-free so far and I'm no-where near needing treatment yet. So think carefully and don't make any knee-jerk decisions.

Oh, and I forgot to say before... welcome to the forums.
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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 lawrence03

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Re: Advice: Newly Diagnosed, About to Start Treatment
« Reply #17 on: June 28, 2010, 05:18:08 PM »
Thanks Ann, to be honest I've been a bit of a health nut for many years and have been taking vitamins and supplements for years so I think adherence won't be a problem.  I have good health insurance, but I am applying for ADAP as a back up, so I'm not worried about that either.

However I do want to make sure I am making the right decision and I've been doing nonstop research for the past 4 weeks, but as you already know there are studies backing up everyone's' theories.

That's great that you've been med free for so long, but I've read that your situation is not very common.  Also what do you think the odds are that my numbers are going to rebound to a safe a normal level by themselves seeing as I am currently at 155k 300cd4 14%?

Offline Ann

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Re: Advice: Newly Diagnosed, About to Start Treatment
« Reply #18 on: June 28, 2010, 06:01:52 PM »
Lawrence, I think odds are very good indeed that your numbers will stabilise to a safe, normal level if you give it some time. There's only one way to find out.... Don't forget that you're barely over a month into your infection.

I know quite a few people who are either still med-free a few years into their infection, or are now on meds after having years without. It's really not all that uncommon to be able to go at least five years or so. A lot of people jump onto meds asap, so we'll never know with them.

But like I say, once you start, you're stuck with them, so think carefully. I'll support your decision either way, but I am definitely in the camp that say - wait to see how your body deals with this on its own before you start taking heavy-duty meds that you might not need.
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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 newt

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Re: Advice: Newly Diagnosed, About to Start Treatment
« Reply #19 on: June 28, 2010, 06:34:30 PM »
The graph posted above is instructive

Your million to lower viral load is a normal pattern for a new infection, as is your CD4 drop and rise

Personally, I would wait and see. If I was possibly inclined to start treatment I might look at a trial eg the START trial which is investigating early treatment (but since this is randomised there is the chance you won't get treatment, just dummy pills). A wait of 3-6 months will probably make no difference, and you can always change your mind and get on with taking the pills.

Treatment in early infection is problematic because there are no studies to say it is or isn't good. It's just the doc's hunch. What we do know is treatment with a CD4 count between 350 and 500 seems best at present, but this doesn't apply to the period after seroconversion. We also know that damage to the immune system is mostly done at the beginning of infection in important respects. How to balance these two things is very difficult to say.

Your CD4 may rise, it may stay the same or fall. You can wait and see for a few weeks if you want. I  waited, but have friends who didn't. We all still here.

- matt
« Last Edit: June 28, 2010, 06:37:09 PM by newt »
"The object is to be a well patient, not a good patient"

Offline Tempeboy

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Re: Advice: Newly Diagnosed, About to Start Treatment
« Reply #20 on: June 28, 2010, 08:21:57 PM »
So I was diagnosed early, my doctor and I recognized my seroconversion as it was somewhat severe and peculiar. Anyways I found out May 27th and now today I am facing the decision to take the meds (truvada/isentress). I'm 24 years old and this whole thing is just a lot to deal with all at once, but my numbers are kind of bad. My initial viral load was 6 million, followed by 2 million, followed by 155k (14 days apart). My first CD4 was 218 followed by 300. My question is why are my numbers so bad? Does this mean I got a violent strain, is it just because I caught it so early and the numbers are on the rebound from seroconversion? All the information I find is about numbers during the asymptomatic phase, but no info about numbers when you are serconverting.

I'm just wondering should I just take the plunge are start the meds or what are the odds that my numbers improve dramatically in a couple of months?

I just thought from everything I read that cd4 levels weren't supposed to be this low until the end and I was just recently infected.

So if anyone has advice or could share what kind of numbers they had during seroconversion and then after...

I would wait, your numbers are rebounding beautifully.

Has your doc checked you out for STI's or other infections?  Some people are diagnosed with other STI's when diagnosed with HIV.  They can have some influence on your numbers and can be treated.

In terms of supplements you might like to consider probiotics, prebiotics and even bovine colostrum - there is some emerging research that supporting the gut helps restore CD4's.  Spirulina is said to have antiviral properties.

There was some research undertaken a few years ago to find out if starting medication during seroconversion had any advantages.  This 'Hit hard, hit early' approach didn't seem to have any benefits.

Have you thought of graphing your own results?  There is a feature here somewhere that I can never work, but others display on their comments.

take care.
Roughly roundabout somewhere in the eighteenth or nineteenth century, Sodomite begat Homosexual out of moral, medical and legal models, bequeathing him Identity, who inbred with Nuclear Family and Industrialism to spawn Homophobia.

Dean Kiley

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Re: Advice: Newly Diagnosed, About to Start Treatment
« Reply #21 on: June 28, 2010, 08:56:41 PM »
Have you thought of graphing your own results?  There is a feature here somewhere that I can never work, but others display on their comments.
though really not a schill for AM, here's the link for "Graphing your Labs" :D
http://www.aidsmeds.com/graphs/

just plug in your viral load counts, cd4 counts, and the dates
then when you go to graph your labs, choose to see both labs (vl and cd4 together)
and you'll have a graph to see the trends of your cd4 and vl, just like in my sig line. ;) ;D
leatherman (aka mIkIE)


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

Offline tennisplayer56

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Re: Advice: Newly Diagnosed, About to Start Treatment
« Reply #22 on: June 28, 2010, 09:11:52 PM »
hey lawrence!
im also 24, and when i was diagnosed my numbers were: vl 22,000, CD4: 450ish (i forgot exactly). At that time i was already done seroconverting cause my numbers were pretty stable. Being a med student, i did a ton of research on whether to start meds or not, and i immediately started meds on the same regimen you were offered: issentress and truvada. From my personal experience, i've had no side effects whatsoever. from what i read about chronic inflammation and blah blah blah, it seems to me in my opinion that starting meds earlier > later.
So i guess what im saying is, if i were you, i would follow your physicians advice and start the medications. i think there is a lot more benefit to decreasing viral inflammation as oppose to waiting for your numbers to start dropping.
if you think about it this way, there is not yet concrete guidelines about when to start medications since they keep changing (increasing the CD4 count number) the recommended point of when to start treatment. and there are so many articles about the dangers HIV has with chronic inflammation effects on the body.
And with a regimen that has supposedly none/little side effects, i'd so go for it!

Good luck!

Offline lawrence03

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Re: Advice: Newly Diagnosed, About to Start Treatment
« Reply #23 on: June 29, 2010, 03:09:48 AM »
Thanks everyone, I'm glad to be getting so much advice...

I'm going to contact my doctor again with some of the advice you all have given me, but this is where I am at mentally.  It seems to me the benefit of reducing the damage and inflammation caused by the virus outweighs the possible side effects of the haart therapy since the isentress/truvada combo seems to be well tolerated. 

However my remaining concerns are:
Is there a benefit of seeing where my numbers stabilize without the assistance of meds since I am still in what seems to be the final stages of my seroconversoin?

Do you think starting this treatment would really impact my treatment options down the road in lets say 2-5 years (assuming if I held off right now I would have to start in that time frame) knowing that I have the kind of discipline to be 100% adherent with my dosing?

I've been checked for all other sti's, hepatitis, tb, etc. and luckily its just hiv (never thought I'd say that).  I'm in great physical health, I have a bit of an obsession for years with nutrition and physical fitness, so luckily my lifestyle is already on the right track. 

I just want to do everything possible to fight this and it just seems like if I wait I'm ultimately going to end up on meds anyways so why not start now if there is a chance that reducing the viral load/inflammation right from the beginning may offer long term benefits?

I'm trying to see both sides so that I can make an educated decision and everyone has excellent points I just want to be 100% confident in my decision regardless of what it is.

Offline Tempeboy

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Re: Advice: Newly Diagnosed, About to Start Treatment
« Reply #24 on: June 29, 2010, 03:40:04 AM »
In terms of inflammation you could take a good quality fish oil supplement and check out the anti inflammatory diet.  It was discussed recently in the nutrition thread.

Tumeric, garlic and ginger all have strong anti inflammatory properties, as do green tea and slippery elm.  You can get combined anti inflammatory supplements and over the counter medications that will help.

The health issues that develop in response to inflammation take many years to manifest.  Inflammation is a normal part of the human immune response and you would not be at risk of any major health issues as a result of seroconversion, especially not given your age and health.  The flu like symptoms are the symptoms of inflammation - same as the flu or cold or other infections - your body bounces back and settles.

Other powerful options to counter inflammation and related health issues are yoga, meditation, exercise and diet.  The benefit of these options are that the also help counter stress hormones and related responses, so they are good for the mind and the body.

Do you have the option of counselling or face to face peer support with others living with HIV.  Talking can go along way towards helping with stress.
Roughly roundabout somewhere in the eighteenth or nineteenth century, Sodomite begat Homosexual out of moral, medical and legal models, bequeathing him Identity, who inbred with Nuclear Family and Industrialism to spawn Homophobia.

Dean Kiley

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Re: Advice: Newly Diagnosed, About to Start Treatment
« Reply #25 on: June 29, 2010, 06:41:14 AM »
It seems to me the benefit of reducing the damage and inflammation caused by the virus outweighs the possible side effects of the haart therapy since the isentress/truvada combo seems to be well tolerated.


No, what people here are generally telling you is that you are imagining damage from HIV that you can't at the present time predict.  

I would say reading between your lines, you are fixed emotionally and intellectually on controlling the infection via starting HAART.  Whereas your body may be able to control it for quite some time.

You have posted several times only to one side of the argument - going on HAART now.  Just want you to be aware of that. You can't seem to put into your own words the idea of not taking HAART. 

Do you think starting this treatment would really impact my treatment options down the road in lets say 2-5 years (assuming if I held off right now I would have to start in that time frame) knowing that I have the kind of discipline to be 100% adherent with my dosing?
......
I'm trying to see both sides so that I can make an educated decision and everyone has excellent points I just want to be 100% confident in my decision regardless of what it is.

Seems like starting HAART now doesn't have much impact on future treatment options. Again, it depends on the resistances you may or may not have.  

Seems like you are really into discipline and control and "100%"''s -- all or nothing.  Well thats typical of a Young Turk and bravo, you'll achieve a lot in life.

I hope you can also see that sometimes you have to be a bit nuanced and expect the unexpected and can't expect to control everything, or everything to be "100%".

« Last Edit: June 29, 2010, 06:43:25 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Boze

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Re: Advice: Newly Diagnosed, About to Start Treatment
« Reply #26 on: June 29, 2010, 08:53:35 AM »
Hi there, I have been in your shoes about a month ago. A fairly young individual finding out rekatively early (that's great news btw - that you'll appreciate once you get used to the diagnosis) about their infection. I also had to figure out for myself whether to start medication. I decided to start, been on atripla for about three weeks now.

I went over my reasoning in a separate post - you can look it up in my post history or pm me if you have trouble finding it.
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline tennisplayer56

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Re: Advice: Newly Diagnosed, About to Start Treatment
« Reply #27 on: June 29, 2010, 09:00:41 AM »
In terms of inflammation you could take a good quality fish oil supplement and check out the anti inflammatory diet.  It was discussed recently in the nutrition thread.

Tumeric, garlic and ginger all have strong anti inflammatory properties, as do green tea and slippery elm.  You can get combined anti inflammatory supplements and over the counter medications that will help.


The only additional supplements i take are a multivitamin. I tend to be wary of hollistic medicine, and i dont think it can do much for HIV/inflammation. Otherwise, why don't doctors prescribe fishoil/tumeric/garlic/ginger when one has a cold/flu? And unlike the flu where we get over it, HIV is constant inflammation, with the lower the CD4/higher the viral load, the more inflammation and the more damage to ones body. Sorry tempeboy, i dont mean to attack your comments.

I was at first confused about this inflammation topic, but from what i got from my physician, lots of the damage done by inflammation is irreversible even if your CD4 counts rebound. All those articles/research papers talking about people with their health issues related to chronic inflammation, is just that: people without meds and having a high inflammatory state for a long period of time. Looking back, even if my CD4 count was higher, i would have still started meds right away.

Offline tommy246

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Re: Advice: Newly Diagnosed, About to Start Treatment
« Reply #28 on: June 29, 2010, 10:47:31 AM »
Hi , you should take a look at the johnshopkins hiv website , the well respected dr gallant will answer your questions within three days , read some of the questions similar to yours in the archive section. dr gallant is in favour of early treatment as he says untreated hiv and inflamation does a lot more damage than modern meds . Its a very personal choice though some people like ann the moderator feels great after 13 years with no meds i felt lousy tired burnt out and was glad to start but with your numbers your out the danger zone so another three or six months would make little difference if any to your situation and give you time to think about whats best for you.
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND

Offline eric48

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Re: Advice: Newly Diagnosed, About to Start Treatment
« Reply #29 on: June 29, 2010, 11:05:45 AM »
If you are not sure about starting right now, you could at least wait for the next lab results and see the trends

look at CD 4, if above a certain level (your call, my call would be 500), then
look at CD4 % if above a certain level (your call, my call would be 25), then
look at viral load

Personnally, I had 3 lab results before making a decision. They were kind of in the same range. No obvious trend. Yours have a trend. And you are not in a danger zone...

I know all this can be confusing. You might be better off cool down, wait for next lab results and reassess then situation.

Be carefull not to catch any thing else and not transmit the virus to others.

Cheers!
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 2 months

Offline newt

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Re: Advice: Newly Diagnosed, About to Start Treatment
« Reply #30 on: June 29, 2010, 04:26:28 PM »
Quote
Is there a benefit of seeing where my numbers stabilize without the assistance of meds since I am still in what seems to be the final stages of my seroconversoin?

What mr mecch said..

A wait of, say, 3 (or even 6) months will be neither here nor there and may be instructicve, ie your CD4 count may rise again and stabilise. Or, indeed, you may see it decline in which case starting is a serious option (recommended even). But you need a few tests to get a picture of the trend.

Plus, do you not need/want a little while to think about all of this and adjust to your new-found situation?

On options, no, starting now will not reduce your options down the line.
"The object is to be a well patient, not a good patient"

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Offline lawrence03

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Re: Advice: Newly Diagnosed, About to Start Treatment
« Reply #32 on: June 30, 2010, 02:43:45 AM »
It is yes

Online mecch

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Re: Advice: Newly Diagnosed, About to Start Treatment
« Reply #33 on: June 30, 2010, 06:54:18 AM »
So that doc says you could just as well start now. And your doc, too?  And you want to, right?
That makes three votes for starting now.  ;D
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Tempeboy

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Re: Advice: Newly Diagnosed, About to Start Treatment
« Reply #34 on: July 01, 2010, 01:39:28 AM »
The only additional supplements i take are a multivitamin. I tend to be wary of hollistic medicine, and i dont think it can do much for HIV/inflammation. Otherwise, why don't doctors prescribe fishoil/tumeric/garlic/ginger when one has a cold/flu? And unlike the flu where we get over it, HIV is constant inflammation, with the lower the CD4/higher the viral load, the more inflammation and the more damage to ones body. Sorry tempeboy, i dont mean to attack your comments.

I was at first confused about this inflammation topic, but from what i got from my physician, lots of the damage done by inflammation is irreversible even if your CD4 counts rebound. All those articles/research papers talking about people with their health issues related to chronic inflammation, is just that: people without meds and having a high inflammatory state for a long period of time. Looking back, even if my CD4 count was higher, i would have still started meds right away.


A diet rich in Omega 3 or fish oil supplements are highly recommended for people with all sorts of inflammatory related health issues - especially HIV.  They are good for lowering cholestrol and for mood as well, most of our docs recommend fish oils supplements, and others.
Roughly roundabout somewhere in the eighteenth or nineteenth century, Sodomite begat Homosexual out of moral, medical and legal models, bequeathing him Identity, who inbred with Nuclear Family and Industrialism to spawn Homophobia.

Dean Kiley

 


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