Author Topic: Bad seroconversion = quicker disease progression? (Read 11931 times)

Londonguy · « **on:** February 22, 2007, 05:29:43 pm »

Never heard of this before but I just saw it on aidsmap

'Some people report only a mild flu–like illness 2 to 6 weeks after a risk of HIV exposure, but others experience an illness severe enough to require hospitalisation. The longer the illness lasts, and the more severe it is, the more likely you would be to develop AIDS within five years, presuming you were not to use antiretroviral therapy. '

I was just wondering if there was any anecdotal evidence as to whether this is true. My seroconversion was horrible and I progressed to AIDS in less than 2 years. But I also had syphilis twice which really hit my CD4s so it's impossible to say if it would have happened without syphilis.

aupointillimite · « **Reply #1 on:** February 22, 2007, 05:35:10 pm »

An immunologist told me that the fact that I had absolutely no seroconversion illness COULD indicate that I MIGHT be infected with a POSSIBLY "less severe" strain of HIV.

Of course, it was all highly theoretical... and he just might have been saying that to help me feel better (this was a couple weeks after diagnosis), but I do have a naturally pretty low viral load (7,000 to 9,000), so there might be something to it... but I don't know.

Bucko · « **Reply #2 on:** February 22, 2007, 05:36:44 pm »

I'm not really sure how there's a connection beyond anecdote. I've always harbored a strong suspicion that a certain very bad cold of two week's duration might have been ARS, but it might have been just a cold (it was a typically dreadful Boston winter).

That happened around March, 1984. I remained symptom free until 1996, when a pair of OIs caused me to seek medical treatment (and get tested).

Brent
(Who's glad he lives in SoFla)

aupointillimite · « **Reply #3 on:** February 22, 2007, 05:39:55 pm »

Quote from: Bucko on February 22, 2007, 05:36:44 pm

I'm not really sure how there's a connection beyond anecdote.

Me neither... that's why I'm kind of surprised this was brought up... like I said, an immunologist told me... but it sounded so vague that I would never dream to present it as fact or even as a hope to anyone...

Moffie65 · « **Reply #4 on:** February 22, 2007, 05:40:46 pm »

I had seroconversion for six weeks in 1983, and was a mess. I then recovered, got busy and after five years, quit my job with Eastman Kodak and bought a Kenworth truck, and hit the road. I got PCP in 1994 while starting an AIDS Organization. I nearly died twice but guess what, that is just my experience. I think you'll find that although similar, most of our stories are unique to our bodies and our lives. This bug is just far too much of a crap shoot to figure it out.

Like you, many of my friends were living very similar lives to me and went to full AIDS within the year of diagnosis. Unfortunately, they had no choice of starting meds or not, there were none.

Love.

Andy Velez · « **Reply #5 on:** February 22, 2007, 05:41:06 pm »

London, I've never found any really solid correlation between ARS and subsequent health, disease progression and/or response to treatment.

So I'm wondering what's going on with you now in terms of your numbers and general health. How are you doing? Are concerns about that prompting this question?

hussy_24 · « **Reply #6 on:** February 22, 2007, 05:50:01 pm »

there was a thread a few months back about this where everyone said different things so i asked the nurse at my old clinic, she basically said the worser the seroconversion the quicker the disease will progress.

personally -> my seroconversion was like 1 week of the flu bedridden, collapsing, in hospital for a week on a drip, and like 3 weeks at home after that being so tired falling asleep after breakfast! lol and my legs felt so exhausted as if i had run a marathon so i couldnt go back to work until i could walk properly again, i felt like i was in a daze for like 5 weeks is that?

and i still feel tired and fatigued quite often, its something i never got over, often late for work too which kinda spoils relations at work everyone thinks am lazy but i feel like i'm about to drop dead all the time

. i certainly know i have like 50% less energy and zest for life than i did before seroconverting. and its because i have 50% energy that my doctor says i'm fine and dont take me seriously and just sends me "happily on my way", i know to look at my body that i'm vanishing and my legs are so thin my trousers seem baggier and baggier and it just looks odd, but the doctor even examined my legs and said i looked fine .

. basically, i kinda acknowledge my seroconversion was bad and still feeling the effects now, i thought my hiv strain was weedy having low viral loads but it seems to be more "efficient" in that theres not much viral load but its very effective and ruining my cd4 (all my results been in the 200's)

Londonguy · « **Reply #7 on:** February 22, 2007, 06:16:58 pm »

Quote from: Andy Velez on February 22, 2007, 05:41:06 pm

London, I've never found any really solid correlation between ARS and subsequent health, disease progression and/or response to treatment.

So I'm wondering what's going on with you now in terms of your numbers and general health. How are you doing? Are concerns about that prompting this question?

There actually wasn't really any reason why I asked beyond being interested. It was something I had never heard before but Aidsmap seems to be a reliable source so I was just curious to see if people who had had bad Seroconversion found that their CD4s dropped very quickly.

I mean, I do feel like death right now but it wasn't that that prompted me to ask the question

tigger2376 · « **Reply #8 on:** February 22, 2007, 06:54:58 pm »

I serocoverted so badly was in hospital for 19 weeks. Am 5 years in,only started meds 4 months ago. CD4 gone from 1000 (!!!!) at diagnosis to 347,with 2 bouts of pnuemonia last year,and stevens johnsons syndrome. Don't think bad seroconversion helps in that it significantly weakens you at onset but thats possibly it. Know its sometimes a different progression between genders,again according to aidsmap,but hope this at least informative.
sorry you're feeling crap babe,try and pamper yourself. Take care HUGS
Jo

thirtysomething · « **Reply #9 on:** February 22, 2007, 09:10:30 pm »

I had Pnuemonia when I was seroconverting, I lost 16 lbs in 2 weeks! It was like hell.. But look at me now, I gained back all my weight in like a month. It will be one year on March 9th that I was confirmed +ve. my CD4s, CD4 percent and VL are in pretty good shape. I'm not on Meds. (Check out my signature for the numbers)

I believe it's just how you take care of yourself after you are diagnosed. I have never fallen sick in this past 1 year now, I eat good food, sleep well and exercise..Though my doctor says that my CD4s will rise more if I stop smoking!

Longislander · « **Reply #10 on:** February 22, 2007, 09:15:47 pm »

Hi Londonguy,

I had a pretty mild serconversion. I felt really really tired on the drive home from the gym one night. The next morning I was ok, but as soon as I got to work I was exhausted. I went home , had fevers on and off to 101. Slept alot. Waited for the cold part of the flu~never came. 2 mornings later I woke up with no fever, and felt fine.

I got tested because I read online that was a sign of HIV.

Im still a study in progress, but my #'s are below.

aztecan · « **Reply #11 on:** February 23, 2007, 12:16:04 am »

I wound up hospitalized with viral meningitis for a week. Nasty stuff. Within that week I lost 30 pounds and could barely remain alert and awake for more than a 15-20 minute stretch.

I also could barely walk without help.

My first doc thinks this is when I seroconverted. She may well be right, but there were no tests at that time to use as proof - it was June 1980.

Since then, I have been pretty much OK. So, I would say people who predict how one person's seroconversion is going affect their progresion to advanced HIV disease are all wet.

But, that's just me.

HUGS,

Mark

HIVworker · « **Reply #12 on:** February 23, 2007, 12:35:45 am »

I've read a lot of reports of people who have heard from their doctor that they have a wimpy or aggressive strain of HIV. For me this is misinformation. If you (the doctor) have evidence that this is the case, then state it or don't say it.

While there are less aggressive forms of HIV (HIV-2 comes to mind) the viral load and progression to AIDS is not a simple formula that allows you to attribute blame solely to the virus. The way the human body fights HIV can play a part. While HIV strains are different, so is our genetic makeup. For example, if you react strongly to HIV your body could bring more CD4 cells to the fight - something that HIV would actually want being as it replicates in these cells and these cells either die off or are killed....hence rapid decay in CD4 cells. Study from primates reveal that some can live with a virus strain that will kill different types animals and the difference is in the immune system's response.

I guess my point is that I am fed up of doctors waving their hands around and saying something is more or less aggressive without any actual proof. I have read stories on here where people were told something was wimpy and they wouldn't need meds for years only to be turned around by a precipitous fall in CD4 cells.

I'm not dumping the motherload on the immune system and pointing the finger from the virus to the body. I'm saying that it is a complex issue and one should be wary of a doctor that waves their hands in the air. They should realize that such comments are taken to heart and sometimes people will deal with their disease differently having heard that they might be infected with something wimpy of aggressive. As I say to my own doctor when they say they checked me out and my ear infection is caused by a virus.

"Yah, which one?"

Rich

jkinatl2 · « **Reply #13 on:** February 23, 2007, 12:45:14 am »

I totally agree with HIVWorker. I have yet to see evidence that ARS necessarily equals faster progression. Even though that was the case for me, I submit that my own genetics had as much to do with it as the strain of virus.

I got pretty nasty ARS symptoms in early January of 1993. I had such a high fever that I was hallucinating. I still wonder if those squirrels ended up making that cake they were talking about. Any rational guy would have hit the ER right away, but I was simply bedridden, and in my late twenties, and not an ER kinda guy. And after a week, the symptoms went away. Well, maybe two weeks.

However, I then tested positive in April of that same year, and dropped to 180 T Cells and had PCP by the end of 1994. Stress, work, and trying to run a small non profit Prevention organization had a lot to do with that. But I was on AZT monotherapy the whole time.

I have yet to spend any significant length of time outside the AIDS perameter. But that's simply my own anecdotal experience.

Since ARS is the body's initial recognition of the virus, and it's attempt to squash it, it would seem more logical for a strong initial response to indicate a more robust immune system and a longer time between infection and progression. I have yet to see compelling scientific evidence either way.

HIVworker · « **Reply #14 on:** February 23, 2007, 12:49:04 am »

I agree with your logic about an aggressive immune system for all viruses that didn't use the immune system for replication. For HIV a strong immune response could be akin to putting gasoline on the fire. It seems that monkeys that can live with HIV do so because of a weaker or more passive immune response. I can dig out that data for the discussion if it would be of interest.

R

jkinatl2 · « **Reply #15 on:** February 23, 2007, 12:52:52 am »

You know me, R. Likee the science.

And you are right, given the HIV's target, the immune system, all bets are skewed backwards. I forget that sometimes.

It sucks to try and make decent scientific analogies when I just hurt so fucking bad. I know my logic fails me. A healthier Jonathan would have thought of your caveat. Damnit, dying is hard. At least I am not trying for comedy.

HIVworker · « **Reply #16 on:** February 23, 2007, 01:01:55 am »

Oh your logic is doing better than you think. I am sorry you are hurting but glad to be talking to you.

Here is a relevant paper on HIV seroconversion (symptoms being stronger often indicate strong immune response) and the effect of a strong immune response to HIV.

It's open access so everyone can read it.

http://www.jci.org/cgi/content/full/113/6/808

Rich

HIVworker · « **Reply #17 on:** February 23, 2007, 01:07:09 am »

I would like to point out right now that Bruce Walker uses the "Fuel to the fire" analogy in this paper. I haven't read that paper for a while but am disappointed to read that the whole HIV "FIRE" analogy I have been using appears to either have been co-invented by Dr Walker or I subconsciously ripped him off. I think the latter. Either way, it is a good read and I am basing a lot of my side of the discussion on the papers of Walker, Haas and Feinberg.

Rich

newt · « **Reply #18 on:** February 23, 2007, 05:10:38 am »

What HIV Worker and JK said.

Aidsmap is reliable, but I think this is one of those areas of study where you can get what you measure, ie some kind of selection bias.

Identical HIV virus will case faster/slower progression and harder/kinder(!?) acute infection in different people. "Aggressive" strains are a bit of a descriptive figleaf, its virus x body that makes the damn thing aggressive or not. I have friends who had serious, long acute infections and friends who had none at all, who variously progressed fast and slow in a way that seems unrelated to severity of seroconversion. Not a scientific sample, but just saying.

- matt

Now playing: Black Spade, My Space

Ann · « **Reply #19 on:** February 23, 2007, 12:23:08 pm »

Hi London,

I had a fairly horrific seroconversion and ten years later my numbers are good and I'm nowhere near needing meds. ~shrug~

Ann

aupointillimite · « **Reply #20 on:** February 23, 2007, 12:26:18 pm »

Regardless as to whether or not seroconversion means anything in terms of disease progression... I realize that I lucked out by not having to go through it at all.

I thought it only happened in about 50% of cases, but it seems like, anecdotally, a lot more people here have gone through it then that.

Has there been any new research regarding how often there are any symptoms while seroconverting?

koksi · « **Reply #21 on:** February 23, 2007, 07:05:49 pm »

When I tested positive in SF in May 2006, there was some sort of study at UCSF that was involved in assessing whether suppressing the virus during seroconversion, or 'viremia' or whatever would slow the overall progress of the disease.

My seroconversion experience was hellishly bad. As *soon* as I started to feel sick, I knew what it was. 'This is HIV.' It was like two weeks to the hour practically after I had been had an unsafe encounter. So I was in bed for many days, exhausted, feverish. I took codeine to help dull the pain and let me sleep. My doctor did not listen to me when I told him it was HIV, and I ended up returning a positive test for strep throat. So he thought it was that. But I knew what it really was.

I had other symptoms too. I think I had neuropathy during the viremia stage: there were several days where my arms and legs felt itchy and like I had to move them. It was an extremely strange feeling. I also developed huge patches of thick, dry, kind of ecxema-ish skin on my elbows.

The worst part for me was that scratching my elbows led to an infection for which I was prescribed Bactrim, to which I had a severe allergic reaction. So after seroconversion flu, I had HIVES for 6 weeks over my entire body. Cortisone cream couldn't even begin to relieve the itching, but my doctors refused a cortisone shot because apparently that weakens the immune system and my immune system was under serious assault at the time.

I have wondered and worried whether I missed an opportunity to enroll in that UCSF project. I think it was called Options.

MitchMiller · « **Reply #22 on:** February 23, 2007, 09:36:24 pm »

A fast progressor here... I went from infection to clinical AIDS (tcell < 200) in 7 months. My seroconversion also started exactly 14 days after unsafe sex. The illness lasted one month. However, I had only really severe flu symptoms for 3 days. 19 days after infection, tcells at 460. Tinnitus and massive headaches were the most long lasting and prominent symptoms. However, I missed only one day of work (a friday then in bed two days). After one month, the illness was entirely gone and I tested negative. Six months later, follow-up test proved positive and one month later tcells went under 200 and fell 30/month from there until I started meds. I would say my illness was probably of average severity, but obviously I would have been dead without meds within two years.

sweetasmeli · « **Reply #23 on:** February 24, 2007, 06:25:42 am »

Well I bloody well hope not!

Having retraced my seroconversion back to Sept 1999, I clearly recall a horrendous 2 weeks spent - apart from one visit to the hospital emergency room - pretty much bedbound. Oh also apart from copious sprints to and from the bathroom to deal with sporadic bursts of dire-rear and/or vomiting. My raging symptoms included flu-like stuff, burning fever, rash all over body, ulcers in throat and aforementioned dire-rear and vomiting (of blood too, as part of the bargain!). Sadly no cake-baking squirrels though...

I'm now 7 years into this delightful game of Battlestar Virus, of which over 4 years have been knowingly. CD4 count has fluctuated between high 200s and high 500s/600. CD4% has remained constant, averaging out out 35%. Viral load has also fluctuated but never gone above 67,100 (at which point - bizarrely - my CD4% reached one of its highest at 43%!).

I don't know science but at all. But I do know my body. Even though at the time I didn't know what was happening, I knew when I seroconverted that something major had changed with my body; just took a further 3 years for the truth to come to light.

Last year I let stress and anxiety become my slave master; it had gradually built up following diagnosis. My health took a huge knock and so did my counts. So I took measures to turn that around - therapy, change of attitude and change in diet and lifestyle - and so far it looks like it's working.

Latest counts from Dec 2006:
CD4 - 351 (33%)
Viral load - less than 400 (which baffled my consultants!)

And more important (to me), so far NO MEDS.

Even though I don't know squat about science, I trust those who do. So, I'll hedge my bets with the likes of The Science Boys (AM's equivalent of The Hardy Boys!): Rich, Jonathan and Matt.

Yeia kai hara!

A very healthy (in every way!) Melia

---*edited to wink at The Boys!---

HIVworker · « **Reply #24 on:** February 24, 2007, 08:54:37 am »

Nevermind....I was going to put something and changed my mind.

sweetasmeli · « **Reply #25 on:** February 24, 2007, 02:18:08 pm »

Actually I'm a bit confused (doesn't take much)...

I re-read this thread tonight and realised that I may have kinda misunderstood (or not...I really don't know!). Jonathan was saying one thing, then Rich disagreed with him but then produced a paper that kind of agreed with him (I think...I'm seriously USELESS with scientific papers!) and then Matt agreed with both of them!

My take on this issue from what you 3 boys were saying is that normally bad seroconversion is not a good sign for the immune system but that reports have shown that the jury is still out on that. Yes? No?

OH I DONT GET SCIENCE TALK!

A Muddled Melia

HIVworker · « **Reply #26 on:** February 24, 2007, 02:35:38 pm »

Sorry for the confusion. The issue under debate in the paper can be summed up by this one line.

"Thus, a stronger immune response to HIV might have the paradoxical effect of enhancing viral replication and accelerating disease progression. "

It is papers like this that form the opinion that a strong immune response, while good for clearing infections of other viruses, MAY not be good for HIV. Immune response involves T-cell activation and proliferation. As HIV requires activated T-cells to replicate, this is akin to putting gasoline on a fire to put it out. Rather than accelerating HIV's decline, it has the opposite effect - or so the theory under debate goes.

I believe Matt was agreeing to the statement that the virus itself is not the only factor that can lead to disease progression but also the body's genetic makeup.

The study from AIDSmap looked at seroconversion and disease progression. Seroconversion sickness can be thought of as a marker for the immune response. Matt, Jonathan and I were speculating as to why this might be the case. I think the jury is out on the AIDSmap study because you have to ask whether seroconversion sickness is a good marker for immune response. There are other specific tests that have led to the theory in Bruce Walker's paper.

Does that clear it up a little?

Rich

HIVworker · « **Reply #27 on:** February 24, 2007, 02:43:03 pm »

Here is another paper that looks at symptoms and disease progression. It appears not to be based on anecdotal evidence.

http://www.journals.uchicago.edu/CID/journal/issues/v35n1/011301/011301.web.pdf

sweetasmeli · « **Reply #28 on:** February 24, 2007, 03:16:42 pm »

Quote from: HIVworker on February 24, 2007, 02:35:38 pm

Does that clear it up a little?

Yes. Thanks!

Quote from: HIVworker on February 24, 2007, 02:35:38 pm

Sorry for the confusion.

Thats totally ok. Like I said, it doesn't take much!

I have the utmost respect for what you, Matt and Jonathan contribute here. I am often in total awe at how much you all know! Unfortunately, my science-challenged brain hardly actually understands any of it until I get my Science Translator (ie Ann) to do her thing...

Quote from: HIVworker on February 24, 2007, 02:35:38 pm

The issue under debate in the paper can be summed up by this one line.

"Thus, a stronger immune response to HIV might have the paradoxical effect of enhancing viral replication and accelerating disease progression. "

Oh... $:-\$

So, in other words, its not necessarily a good thing when a doctor tells me that I "appear to have a strong immune system that is fighting the virus well"...?

A less muddled but now somewhat perplexed Melia $:-\$
(who is very slowly reading through the other link you posted...thanks for that too!)

HIVworker · « **Reply #29 on:** February 24, 2007, 06:36:30 pm »

Let me ask you one thing....have you had a specific test for your immune response to HIV. If not, then your doctor is just blowing hot air when it comes to how "Strong" your immune system is relating to HIV. Let's be clear about one thing though. This theory ONLY discusses the strength of the immune system towards HIV...nothing more. Having a weak response to HIV doesn't mean one has a weak immune system. It SPECIFICALLY relates ONLY to HIV and isn't supposed to be translated to having a weak immune system.

You probably have good numbers, therefore you are doing well. If this were any other chronic infection one could conclude that you have a good immune response to THAT virus. Therefore a doctor is likely to say you are fighting off HIV well because your numbers are good.

This theory says that this statement is wrong. Your numbers are good because you AREN'T fighting HIV. If you were, you would be bringing T-cells to the fight and that might lead to more HIV replication and faster disease progression.

Therefore your doctor and this theory differ in semantics only....pertaining to the REASON your numbers are good. Like I said, if they haven't made any specific measurement of your immune function against HIV they are just talking out of their ass. That doesn't make them a bad doctor and maybe they are saying it because it is something you can relate to because we are all use to strong immune responses to viruses equalling a good clinical outcome. I wouldn't knock your doctor too much as they appear to be doing a good job. It's just a semantic thing...and I personally don't like it when people tell me something without having any proof.

Nothing in this discussion should worry you and nothing should make you rethink your interaction with your doctor or any medication you are on. Nor should it make you rethink whether you are going to be a rapid progressor. The theory here merely looks into why different people can progress to AIDS faster than others.

Rich

sweetasmeli · « **Reply #30 on:** February 25, 2007, 01:18:51 am »

See? This is why I have the utmost respect for you Science Boys!

No I haven't had any specific tests done. And what you're saying makes perfect sense.

Rich, thanks for all your detailed responses and for helping to put my mind at rest on this issue.

Yeia kai hara!

Melia

HIVworker · « **Reply #31 on:** February 25, 2007, 01:27:49 am »

You are more than welcome.

R

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Author Topic: Bad seroconversion = quicker disease progression? (Read 11931 times)