Cells around 390. Skins problems appear. To start or not to start?

[lifer]

hey guys i havent been on here for a while , hope everyone is doing well. I really need to hear your opinion in this.

so my last three labresults were 360, 440 en 390 just recently. VL around 40.000

my doc says its not necessary to start meds now and that we can probably stretch this for another 3 to 4 months. she says since im going to be on meds forever and im quite young (22), i might as well stretch this as far as i can. which is all fine bbuutt..


since a few weeks i am experiencing weird skin problems. bumpy pimples just pop out of nowhere on my jawline, back, legs and scalp. nothing really huge but theyre painful at times and ive already made an overhaul in my diet for WEEKS and yet cant find the culprit other than maybe HIV and especially the CD4 cells being on the lower side. Does this perhaps mean my immune system is crashing and its resulting in skin problems? Ive always been prone to acne but ive never had this before. usually when i would change my eating habits it would just dissapear. but now that i have and it still pops up and takes a much longer time to heal im starting to get worried. should i link this to hiv?
im seeing a derm on wednesday and im sure shes going to prescribe some kind of a topical treatment but somehow my intuition is telling me this wont be solved until i start taking meds (which in my case would be atripla, already discussed) and see my CD4 cells rise. its basically my call. if iw ant, i can be on atripla by the end of next week. what do you guys think? its scary to start the meds especially psychologically if this is how its going to be for the rest of the time that im off meds, then i might as well just be on it right?

i appreciate your opinion.

[lifer]

also what are the chances that this will go away as soon as im on meds? i mean, what if i develop another kind of a rash from atripla itself and will deal with this for weeks/months?

[kev72]

I have been having the same problems. My doctor checked me out and said once I start treatment mine will disappear. I have been on Atripla a few weeks, and still have these things. They are like acne and I look like shit. Not sure if its from the HIV, or the fact that my CD4 is low but its driving me crazy in my social life LOL

[PozBrian]

 I had those too. Kinda painful, kinda large, and deeper than acne I'd experienced before. They started about 3 weeks after I started atripla. They lasted a couple months but I haven't had any since last fall. My CD4 counts had been slowly going up and it may be more to getting a "healthier" immune system, My ID doc thought so anyway.  Not a problem for me anymore.

[kev72]

Mine seemed to start up when I started the Bactrim and zithromax. I started the Atripla a week after starting those.

[lifer]

but see. thats the biggest worry that i have about starting atripla now. it might worsen it all at first before it will eventually clear up which might take months indeed. i might just take a minor antibiotic against acne then (minocycline) because i know that that does help since ive been on it before and it has helped a great deal. perhaps i should just wait and have the dermatologist take a look at it first...

[mecch]

Start your HAART now. What is the difference of a few months really. You'll have to commit then, so you can just as well commit now, and get on the road to better skin, to boot.

There is something called IRIS when you start - your skin could get worse for a few months. Or maybe you won't get immune reconstitution problems. 

It doesn't matter.  If you wait a few months, your skin problems stay, AND you still have the same risk of IRIS. 

[buffaloboy]

Lifer:

Remember that skin problems of the type you describe can occur at any time, to anybody, whether they have HIV or not. Many people who escape teenage acne are often horrified when it strikes them in their late 20s or 30s, but it's certainly not uncommon.

If you feel ready to start taking combination therapy then start now, and it might have the bonus of helping your skin clear up. But I wouldn't start it just to prevent further outbreaks as you could well be disappointed if that's not the way things work out.

[mecch]

I disagree with the last poster.
My bet would be your weakened and stressed immunity and the general inflammation that comes with active hiv is doing nothing good for your skin.  Furthermore, you are anxious about HIV.  Also as you say, its inevitable, says your doc.  So won't you get ease of mind knowing your virus replication is FINISHED.  Your mind and body will thank you. I think this will lessen your stress and generally you will be more chilled out, your immune system will reconstitute, and your skin will improve.

[Nestor]

Hi Lifer,

Since people who are on meds have no shortage of problems, a skin problem doesn't sound to me like a very good reason to start HAART.  For everyone who says that as soon as he started HAART his problems melted away, there's someone who says that after starting HAART the problems stuck around or got worse. 

As for your numbers, they sound stable.  I will start HAART when it is clear that my numbers are in decline, not when they are fluctuating or basically stable.  What is your CD4 percentage?  I agree that if it were only a question of a few months, that wouldn't make a big difference.  But how do you know that you might not have many years left during which meds will not be necessary?  I agree with your doctor--five decades on atripla is not something to leap into lightly or needlessly. 

I think it's important to address the problem at hand on its own terms.   I had pretty bad dermatitis and I've largely solved it by improving my diet and taking evening primrose oil and cod liver oil.  You say that you made a major overhaul of your diet and it didn't help; that sounds to me like a sign that the overhaul may not have been complete enough.  Finding the right diet for you, and one that's balanced, is a long process involving trial and error and lots of going 'back to the drawing board'.  For a long time I thought I had the perfect diet for me, and then a couple of minor but annoying problems appeared.  That was a clear signal from my body that my diet was not as perfect as I thought it was and I needed to make some changes. 

 If you want to chat about what you're eating and what the problem might be, I would be happy to do that.  Getting enough sleep is also crucial. 

As for seeing a dermatologist, I went to one when I was having my dermatitis problems and I wish I hadn't bothered.  All she did was exactly what I knew she would do: she said it was dermatitis and she prescribed a cortico-steroid.  Those things solve the problem in the short term, but they do not solve the problem in the long term and they cause more problems, long term, than they solve. 

One thing that I cannot recommend highly enough is Chinese herbal medicine.  I have used it for a variety of problems over the years and I have never known it not to help.  And this problem of yours is exactly the type of thing it is good at dealing with. 

Good luck! 

[lifer]

Thank you for your input Nestor and everyone else. As for my CD4 percentage, I don't know, I'd have to ask.

The thing that frustrates me the most is that I treat my body well nowadays, I cut down on smoking entirely, have limited alcohol intake to only once a week. Start my day with fruits and nuts.Drink shitloads of green tea. Cut down on sodas. Cut down on most dairy. Eat as healthy as ever that including hardly any meat except for grilled/roasted chicken. Work out 4 to 5 times a week. I cannot begin to tell you the radical changes I have underwent over the last couple of months. No junkfood, burgers and crap like that. And yet I don't get back the results I should be seeing after putting so much effort into this. All my friends who are the same age eat crap, smoke, go out and get away with everything and I am the one to be constantly worried about the right things to eat/ not to eat. And of course HIV. I guess all this is not really doing my stress levels any good. But I must not complain. I feel good, except for the skin thing I look ok too. I guess not seeing the results I am expecting to see sometimes kills the drive to continue doing the right thing. But I keep telling myself I must go on. It might take longer to see it but the reward will be there, right? (sorry, didn't mean to turn this into a venting post).

[mecch]

since you have responded to all the people encouraging you to avoid starting, and not to me, who encourages you to start, since your doctor says its a matter of months anyhow, I am curious why you don't address this specifically.

[buffaloboy]

I think this will lessen your stress and generally you will be more chilled out, your immune system will reconstitute, and your skin will improve.

It's misleading in the extreme to make specific prognoses about someone elses conditions, especially when it comes to an organ as large and complex  as the skin. There's a possiblity his breakouts may improve with treatment but no one  can say with any certainty whatsoever - not even a doctor - that this will definitely happen.

[mecch]

thus the words "I THINK"  duh. Im no expert. Just giving some arguments for the other side. His doc says 2-3 months anyway.  

[BlueMoon]

I would say skin problem or not, your CD4 count warrants consideration of meds.  I would do it.  

Your doctor has it backward; since you hope to live for another fifty years or more, probably all of them on meds, a few more months now won't really matter in the long run.    

[buffaloboy]

thus the words "I THINK"  duh. Im no expert. Just giving some arguments for the other side. His doc says 2-3 months anyway.  

In 2-3 months his CD4 count might well have gone up.  Or fallen further. Again, nothing's certain. But breakouts alone seem like insufficient reason to start treatment.

[Moffie65]

Lifer, I don’t know you yet, but I’m the one who won’t bullshit you and I’ll tell the truth, as has been my experience.  

I happen to be pretty much a fuzz ball, and Foliculitis is not only been one of my uninvited guests, but I still deal with it from time to time.  It really is a royal pain in the butt.  I keep on hand, soap that is only available from the pharmacy and can be gotten with a simple script.  This is the soap used before surgery and is medicated to remove all germs before any surgical procedure is done.  It isn’t the brown stuff, but the clear liquid.  This is the ONLY thing that has had any effect on my outbreaks.

Now for the therapy.  I got news for you buddy, you will be on meds for the rest of your life, as your neat moniker states, and so to let your numbers get any worse is probably not a really good idea.  I did that, partly out of ignorance and partly out of the knowledge that I might be very allergic to some of the early medications.  Rebuilding your immune system is not, I say not, an easy experience, and isn’t really a cake walk either.  Let me tell you a bit of a secret.  The life span of an immune cell is about 73 years, give or take a few.  The immune cells you built as a child are still present in your system, and this is why so many of us who are survivors are probably breast fed babies.  Don’t know if that might be true, but certainly is fun to speculate.  Back to the pills.  The immune damage you create, while you wait a very short period of time, is time wasted.  Start the meds already.  It is good for your body and your life.  Plus, you’ll have fewer of the rash outbreaks; I mark my word on that.  






P.S.  I didn’t tell you that my outbreaks are very few now that I have been on meds for the last 16 years.  I still have them, but rarely.

[WillyWump]

Heya Lifer,

Regarding the skin probs...for about 3 months prior starting meds I had terrible spots appear on my legs and upper arms, they would come and go and itch and then scale over, they were the size of a pea. My ID doc didnt know what it was (scary) and sent me to a dermatologist. Dermatologist wasnt real sure what to diagnose it as so he called it psoriasis. anyways long story short, they went away almost immediately after I started meds and have never returned. Although I still have very slight scars (dark spots where the worst of them were).

So for me, my skin probs went away after starting meds.

-Will

[Nestor]

Hi again,

Several people are talking about your doctor's "few months" statement; the more I think about it, the stranger it seems to me.  The only case in which it would make sense would be one in which there had been steady, inexorable decline of CD4s.  In that case, being at 390 now, you could expect to be below 350 in a few months, and then to talk about starting meds really would be reasonable.  However, the three lab results you have told us about do not suggest decline, but rather stability.  Unless your doctor has a crystal ball, Buffalo Boy is correct: your numbers could just as easily go up in the next few months rather than down. 

The percentage really would be a helpful thing to know about. 

Now, it sounds as if you've done some great stuff with your life in the past few months.  I personally have no problem with meat and dairy, but quitting smoking and soda and junk food is certainly a great start.  Remember that "Rome wasn't built in a day."  Your body may even be going through "withdrawal" or shock!  Be patient, take long views, keep reading and investigating, and there should be a solution somewhere.  One good way to start--keep a food journal in which you write down exactly what you eat every day, including drinks, portion sizes (rough estimate) and so forth.  Maybe something will become obvious just from looking at the journal. 

One more thing--about the "shitloads of green tea" that you mention.  I have mixed feelings here.  On one hand, I love green tea; trying and enjoying new varieties of green or oolong tea has been one of my pleasures for years.  And there's no denying that green tea has loads of health benefits.  But it also has caffeine, and I cannot deny that in periods when I don't have any caffeine at all I sleep better at night and have more energy during the day.  I'm in one of my no-caffeine periods right now and I feel the difference.  However, I love the stuff and don't think I'll ever quit forever.  But who knows?  Another question--is there any sugar in all that tea?  If so, then that would definitely be something to cut out! 

Sometimes even good things we do have negative short-term effects.  For example: to use Chinese terminology, meat is a very "yang" food and sugar is very "yin".  Someone who eats a lot of meats and a lot of sweets is at least balancing it out, though obviously not in an ideal way.  Suppose such a person, deciding to live a healthier lifestyle, suddenly cuts out all the sugar, but goes on eating lots of meat.  (I've done that very thing.)  Cutting out sugar is obviously good in itself, but now there's a real imbalance that will wreck havoc in the short term.  If a meat-eater suddenly goes vegetarian but continues to eat lots of sugar, that will be even worse. 

Good luck!

[tednlou2]

You've probably talked about this before and I never saw it-- How long have you been poz?  I'm just wondering if you were recently infected in the last year and could possible see a rise in CD4.  I would say follow your heart on what's best.   

About dairy, I hear so many (especially some celebrities) say dairy is just bad for ya.  Many docs say we need it for the Vit D and other nutrients.  Why is it so bad?   

[veritas]

Lifer,

Your numbers are within the guideline recommendations to start medications. To delay any further is really of no value other than to delay the inevitable. If you could delay for a few more years I might consider it, however your numbers say differently. Don't do any more harm to your immune system. Atripla is  easy to take (once a day) and will do wonders for your immune system. By delaying, you could see further decline in immune function causing other potential problems to arise. Your immune function will not get better until you start medication. Think about it.

v

[kev72]

Hey gang,

As far as the skin problems go, I have been going through the same problems as the poster. None of the doctors I went to gave me any real diagnosis on what it was and just told me to use a cortisone cream. I tried cortisone, Bactroban, Benedryl and nothing helped. The other day I found a tube of Dermator Prednicarbate Cream made by Aventis. I used it, and finally after going through hell with this stuff all over my face, under my eyes and on my farhead and behind my ears, within 2 days, the cream has worked. First the redness disappeared, then the pimple like things started to vanish. Thank God. If anyone is having these issues of folliculitis, you may want to google Dermator and tell you're doc to give you an RX.

As far as the medications go, I am on Bactrim, Zithromax, Flucozonal, and started Atripla a few weeks ago. I had this problem before starting the meds, and even with the start of Atripla, I did not get any better or worse, but I have only been on it for a few weeks.

[zielwolf]

Thank you for your input Nestor and everyone else. As for my CD4 percentage, I don't know, I'd have to ask.

The thing that frustrates me the most is that I treat my body well nowadays, I cut down on smoking entirely, have limited alcohol intake to only once a week. Start my day with fruits and nuts.Drink shitloads of green tea. Cut down on sodas. Cut down on most dairy. Eat as healthy as ever that including hardly any meat except for grilled/roasted chicken. Work out 4 to 5 times a week.

Hey there, I was until recently in a very similar situation as you. My CD4 counts weren't that bad, not quite as good as yours but they were steady, in fact slowly increasing rather than decreasing over the last year.
But my viral load was significant and my CD4 percentage was falling. And I was feeling trapped by this virus, unable to do anything about it.
Like you though, the last thing I did want to do about it was go on a program where I had to take pills every day for the rest of my life, if only because it would make everything real. To me swallowing those pills would confirm physically, not just on a lab report, but bodily and for the rest of my life that I have this thing and can never go back to how it was before (as if I could have anyway).

Before starting, I did all kinds of stuff to help my body fight the virus, all kinds of supplements, eating healthy, exercise, etc. but like the doctor predicted those had few, if any effects on my lab results.

Just last week, I finally, literally swallowed that "bitter pill", or two of them actually and then went to bed freaking out about the side effects that might follow. Well, they turned out not to be bitter at all. They turned out to be rather tasteless actually

I've been on HAART for all of one week now. All my worry was wasted energy. The only side-effects I've had are some mild bloating and more sleepiness than usual for all of 3 days. It's now day 7 and all the side-effects are gone. 7 days and I'm already totally used to swallowing them with my multi-vitamin pill which is the same shape and size (but different colour) and which I have been taking for years.

I wasted so much time and energy fretting and worrying about going on HAART and now that I've done it it's like "What was I thinking?". For the first time since I got diagnosed I finally feel like I am doing something to fight for my life, I can't feel them (hence the "tasteless" description) but I know these pills are right now as I sit here writing this, working to decimate and wipe out HIV in my body while I feel a whole lot better about my situation.

I know how you feel though, because just a week ago I was in exactly the same place as you are. One thing that changed how I thought about it was a comment by a doctor that read like this: "With any other infection, as soon as it's diagnosed we prescribe medicine to fight it; it's only with HIV that we wait and wait. If you have an infection and there is medicine available, why on earth wouldn't you take it as soon as you can?" (There's the side-effects issue of course, but if you're 22 & otherwise healthy it's probably not going to be one.)

Good luck with it.

[buffaloboy]

With your CD4 count currently around 390, starting treatment doesn't need to be rushed into just yet. If I were you I'd get a couple more counts done over the next 6 months and see what the general trend is then:

''Most guidelines now recommend treating anyone whose CD4 count is below 350 and cetainly before it falls below 200''

http://i-base.info/guides/starting/cd4-count-and-guidelines

[Moffie65]

Some of the posters in this thread are not qualified to give you advise, simply because they are denialists.  Lifer, this is the problem with getting advise on the internet anymore.  Some of us have the experience, and then some don't.  I cannot say anymore, but please beware of those that encourage you to ignore the fact that HIV is now in your body for life, and the damage it is doing without therapy is astonishing.  Please consider starting therapy NOW.

In Love.

[buffaloboy]

Some of the posters in this thread are not qualified to give you advise, simply because they are denialists

And who exactly are 'denialists' in this thread? No one here is saying don't get blood counts or to forget about taking medication forever, just that there is no immediate rush, and even his doctor thinks he can hold of for a few months and doesn't need to start 'NOW'. Are you more qualified than his physician then?

As you will have seen in the link I posted, the official UK guidelines suggest starting treatment when the CD4 count falls to 350, and certainly before dropping to 200. Given that the OP is not yet in this position, your advice actually goes against professional thinking.

[megasept]

Some of the posters in this thread are not qualified to give you advise, simply because they are denialists

And who exactly are 'denialists' in this thread? No one here is saying don't get blood counts or to forget about taking medication forever, just that there is no immediate rush, and even his doctor thinks he can hold of for a few months and doesn't need to start 'NOW'. Are you more qualified than his physician then?

As you will have seen in the link I posted, the official UK guidelines suggest starting treatment when the CD4 count falls to 350, and certainly before dropping to 200. Given that the OP is not yet in this position, your advice actually goes against professional thinking.

right on! not so much for the medical advice (i'd probably vote for his starting meds now), but for calling out moffie for the whole listen-to-those-of-us-with-experience bait game! everybody has experiences. many newbies have knowledge to share with LT POZ. respect is a 2-way street.

-steven (aka     megasept)

[Matty the Damned]

right on! not so much for the medical advice (i'd probably vote for his starting meds now), but for calling out moffie for the whole listen-to-those-of-us-with-experience bait game! everybody has experiences. many newbies have knowledge to share with LT POZ. respect is a 2-way street.

-steven (aka     megasept)

Feh to those who want to turn every debtate into n00bs vs LTS. There are a goodly proportion of us who belong to neither faction.

That said there is shrill, ignorant quality to the some of n00b voices around here. They need to understand there is a difference between being attacked and being disagreed with.

MtD

[veritas]

lifer,

US guidelines for starting HIV therapy 2010:

http://www.thebody.com/content/art12720.html

Here's another discussion:

http://www.thebodypro.com/content/art54342.html

Here's the full UK recs:

http://www.aidsmap.com/cms1060354.aspx

Clearly there are benefits to starting early, however, it is your decision.

v

[Ann]

Feh to those who want to turn every debtate into n00bs vs LTS. There are a goodly proportion of us who belong to neither faction.

That said there is shrill, ignorant quality to the some of n00b voices around here. They need to understand there is a difference between being attacked and being disagreed with.

MtD

Well said, Matty. Thank you.

[buffaloboy]

''They need to understand there is a difference between being attacked and being disagreed with.''

I'm sorry, but calling people 'denialists' is being attacked. Why the need for name calling at all? It should be enough for someone to simply present their opposing argument without branding others with controversial names, especially when no one was pushing a 'denialist' agenda on this thread as far as I can see.

[Luke]

Feh to those who want to turn every debtate into n00bs vs LTS. There are a goodly proportion of us who belong to neither faction.

That said there is shrill, ignorant quality to the some of n00b voices around here. They need to understand there is a difference between being attacked and being disagreed with.

MtD

And there we have the usual crass and quite hypocritical ignorance of the clique.

[BrotherDavid]

Dermator Prednicarbate Cream made by Aventis.

Hello,

I am new to you're community and hope I am not imposing but I wanted to agree with the above poster on the Prednicarbate cream as a remedy for folliculitis associated with HIV. I am not a doctor, but from my experience, this was the only cure for this skin issue I was having. It worked very quickly after I had spent a month dealing with unsightly itchy red acne like swelling on my face and neck.

For what it's worth, this skin issue started after I already had an undetectable virile load.

David

[loop78]

For what it's worth. My experience is that my skin condition improved dramatically when I started meds.

I had been fighting a troublesome acne in my back, but also in my face, and had had a couple of sebaceous cysts since I became positive. All of that cleared itself a month or two after starting meds. However, that doesn't mean the same will  necessarily happen to you if you start meds.

Regarding your numbers, you seem to be somewhat stable a little below the new threshold for meds in the us, still above it if you use the European guidelines or the old US ones. Moderate viral load.

So probably meds are not far away in the future for you, but you can wait and see how numbers evolve if you want to.

The above could be slightly different if you knew your cd4%, ie: the lower it is, the more probable it is your skin condition is somehow related to immune activation and the more you would benefit in general of meds.

I'm sorry I cannot be of more help, in the end starting or waiting to see how things go it's still your call. Good luck, whatever you decide to do

[Forevergreen]

start your meds now.

the longer you wait, the more damage there will be to your immune system. you dont want your immune system to get too low b/c it'll be harder for it to recover. what difference will few months make in relation to having to take meds for the rest of your life?

[dixieman]

This is just my opinion... 40,000 viral load and a cd4 count beloww 500... I'd start my meds asap... but, thats just me and if your having skin problems... even with my cd4 count of 1658... I have problems with my skin... its like a constant battle... clears up and breaks back out... Good luck! in whatever you decide...

[adhoc]

Current Guidelines say 350 and I believe they are looking at increasing the current guidelines up to 500. If I'm wrong let me know I don't want t misinform. Regardless I would start more sooner than waiting and putting it off. The healthier you are the better the immune response is. If you are concerned about side effects they're not as bad as the first generation meds (the horror stories) and are tolerable. Most people like Atripla for the dreams they induce, they can be quite vivid. The biggest thing to watch for is depression on the atripla and the rash it may cause(I didn't get one from it) but I hear it goes away fairly soon. Also it is a combo pill so it costs less on co-pays and less hassle. As for the acne I have acne issues and the first thing I can say if it is problematic you need to see a dermatologist first and foremost. Then you can start looking for the cause. Many people get acne at all periods in life and it may or may not be "directly" related to HIV. It can be definitely aggravated by HIV. I have also heard some people have more internal issues (gut) and like me I have the skin issues. Don't mess with over the counter things as they can sometimes do more damage than good and  see your dermatologist first before using them. My dermatologist has me on Minocycline (partially my request) and clindamycin lotion. So far I can say Ive seen an improvement but not completely removed as of yet. But acne can be caused by so many things beyond hormones, bacteria, over oily skin, dry skin the list is endless. Just let your dermatologist know what you have and where you are number wise and they should be able to put something together for you.
Good luck


After posting I read MTDs post with the link to the body, good site but I stand corrected I guess the new guidelines have been raised.

[Miss Philicia]

Current Guidelines say 350 and I believe they are looking at increasing the current guidelines up to 500. If I'm wrong let me know I don't want t misinform.

As of last December the US guidelines were updated:

http://www.aidsmap.com/en/news/90025212-9B46-4408-A81B-AC8719FB6CDF.asp

So instead of recommending 350 as the cut off, they now say between 350 and 500.  Basically this means not to keep waiting until you're at 350.

[Hellraiser]

I actually had some pretty rough skin issues right before starting meds and then after starting meds they got dramatically worse.  However, now 5 months down the roads my skin is looking much much better.  I did recently go through a 2 week treatment of Tetracycline in an attempt to maybe root out any bacterially caused follicutlitis as my doctor was relatively stumped as to what was causing my issues.  Like Willy I also had some really painful sores that would get infected and eventually heal but have left a mark here and there.  On the whole though the skin issues have improved dramatically and in my case I chalk it up to the improved immune system.  With your numbers I'd say you're on the lower end of the suggested time to start meds so if you're prepared take the plunge.  What's stopping you really?

[elf]

I agree that 350 is late/low.
I was diagnosed at 353 and started taking meds the next day.
I really did not want to postpone it although doctors said it would be better
to wait for 30 days to see the viral dynamics.

[buffaloboy]

''Current Guidelines say 350 and I believe they are looking at increasing the current guidelines up to 500. If I'm wrong let me know I don't want t misinform.''


''Doctors are learning more about the best way to treat HIV, but it is still not known for certain when is the best time to start taking HIV treatment.''
 
''If your CD4 cell count is 350 or below you are recommended to discuss HIV treatment with your doctor, and start treatment as soon as you are ready''

http://www.aidsmap.com/cms1230814.aspx

[adhoc]

Thanks Miss P.
I looked at a couple of the links. I went to the source and looked it up at the CDC as well.
Here is the link Ill add to the mix.
http://aidsinfo.nih.gov/contentfiles/AdultandAdolescentGL.pdf This page is dated 12-1-09

It seems there is some difference between info out there. I saw Buffaloboys post and his link is updated as 2-4-10.  Personally from what I talked about with my Doc, they run by the what the CDC states. Unfortunately for me I diagnosed and started meds late and know first hand the problems of not starting while the immune system is intact. Regardless of the links the info is basically stating that anyone around 350 needs to start meds.

In regards to Aidsmap (which I do check as well) isn't it a UK/European based site? Not saying that they are wrong but they may not have the same bearing in the US.

[buffaloboy]

There isn't a single answer on when to start treatment, only guidelines, which can vary depending on the country issuing them.

[Grasshopper]

April 5, 2010

San Francisco Endorses Starting HIV Treatment Immediately After Diagnosis

http://www.aidsmeds.com/articles/treatment_HIV_diagnosis_1667_18253.shtml

[Moffie65]

There isn't a single answer on when to start treatment, only guidelines, which can vary depending on the country issuing them.

........................................................or words of sage advise from those of us who didn't have a choice.

Personally, if I was newly infected, and knew what I know from experience, and the drugs are available and efficacious; I would have started HAART regardless of what my CD4s were, or what anyone else said.  Including the CDC  which was so corrupted during the Bush years, they have no clue what is real or unreal with HIV.  Sorry, just the facts man.

[buffaloboy]

''Others experts argue that while newer HIV medications are less toxic than earlier regimens, the long-term effects of these new drugs remain unknown.

Jay Levy, MD, a San Francisco virologist with the University of California, was one of the first to discover HIV. He’s skeptical of the city’s new policy.

As he told the Times: “It’s just too risky.” ''

http://www.aidsmeds.com/articles/treatment_HIV_diagnosis_1667_18253.shtml

[Miss Philicia]

Thanks Miss P.
I looked at a couple of the links. I went to the source and looked it up at the CDC as well.
Here is the link Ill add to the mix.
http://aidsinfo.nih.gov/contentfiles/AdultandAdolescentGL.pdf This page is dated 12-1-09

It seems there is some difference between info out there. I saw Buffaloboys post and his link is updated as 2-4-10.  Personally from what I talked about with my Doc, they run by the what the CDC states. Unfortunately for me I diagnosed and started meds late and know first hand the problems of not starting while the immune system is intact. Regardless of the links the info is basically stating that anyone around 350 needs to start meds.

In regards to Aidsmap (which I do check as well) isn't it a UK/European based site? Not saying that they are wrong but they may not have the same bearing in the US.

That is correct.  And they often, at a later date, change their recommendations to be in line with CDC recommendations.  Not always I guess, so we'll see.  But regardless, clearly there's a general move in the direction of what the CDC is saying because the latest generation of HIV medications has lower toxicity and greatly less side effects.

[Miss Philicia]

btw, someone in this thread seems to have an agenda, and it's not an official at the CDC

[buffaloboy]

''Personally, if I was newly infected, and knew what I know from experience, and the drugs are available and efficacious; I would have started HAART regardless of what my CD4s were, or what anyone else said.  Including the CDC  which was so corrupted during the Bush years, they have no clue what is real or unreal with HIV.  Sorry, just the facts man.''

This is great. For you. But everyone is different and not everyone wants to start treatment immediately after they have been diagnosed. In the UK, at least, doctors do not urge commencing anti-HIV therapy when the CD4 counts are around the 400 mark, unless HIV related symptoms are also diagnosed.

Until there is unequivocal evidence that commencing early treatment confers real and tangible benefits, I'd be surprised if the UK guidelines are updated any time soon, if only due to the additional financial burden it would place on the NHS.

[Moffie65]

Jay Levy, MD, a San Francisco virologist with the University of California, was one of the first to discover HIV. He’s skeptical of the city’s new policy.

http://www.aidsmeds.com/articles/treatment_HIV_diagnosis_1667_18253.shtml

Please read and quote the bulk of the article.  Shit, if I only listened to Dr. Levy, I would have been dead 10 years ago, which would have made you enormiously happy I suppose.

Damn, what is it with taking one sentence or quote from a doubter and basing all HIV suppositions on those?  For the rest of you who actually hold some respect for the quality of research coming out of the San Francisco department of health; please read the rest of the article, and start your meds already.  Damn this is becoming totally insane here on this forum.   

[Moffie65]

Buffalo Boy.

Do your damn homework.  Once the immune system is damaged from depletion of CD4s, it never, I said never, will work the way the original Immune system worked in a body.  Naive immune cells which are grown after starting HAART, don't ever have the same immune capability that the ones you grew while in childhood.  Why the hell would you ever encourage anyone to delay the start of meds, while their immune system continues to die.

Damn, you are really not working with a full deck of facts my dear friend.

[buffaloboy]

@Moffie: I've made it clear that the information I'm posting is based on clinical guidelines in the UK and this is a position endorsed by most HIV doctors here. I'm not just pulling numbers out of the air and if you have an issue then you need to take it up with the relevant authorities here, rather than petulantly behaving as if anyone who has the audacity to state their country's official information is waging a personal attack on you.

[Ann]

The European and UK guidelines aren't really all that different to the US ones. They both recommend starting at 350 (it used to be when you got to around 200) but the European and UK guidelines say that it isn't necessary to start above 350 unless there are other problems present. Over here, they're waiting on the results of the SMART study before they make any further changes.

http://www.bhiva.org/documents/Guidelines/Treatment%20Guidelines/Current/090708TreatAdd.pdf

http://www.europeanaidsclinicalsociety.org/Guidelines2009/G1_p14.htm

http://i-base.info/guides/starting/cd4-count-and-risk-of-illness

The European guidelines also include advice for the doctor re assessment of the readiness of the patient to start meds, which is very important when you consider adherence issues.

http://www.europeanaidsclinicalsociety.org/Guidelines2009/G1_p10.htm

I honestly don't see any problem with the OP waiting for another set of results. If he feels ready and willing to start meds, fine. However, if he wants to wait, that's fine too. I've been poz for thirteen years now and I'm still not on meds. I've had a few low CD4 results in that time, but they've always gone back up. My last result was 576, 26% and my lowest ever was 281, 23%. My health is good. My lab history is in my profile.

At the end of the day, this is a decision the OP is going to have to make in conjunction with his doctor. It isn't the decision of people posting on a website.

Ann

[Moffie65]

Buffalo

Personally, I don't care what they say in the UK, or the CDC for that matter, I almost always speak from a position of knowledge of living with, and studying this bug for the last 27 years.  Go ahead and quote all the sources you want; I will pay attention to what you say when you start giving me quotes from first hand experience of someone who is not only a researcher, but a person living with the virus.  Now you have something really constructive to do, because so far, I cannot find someone in HIV research who is both knowlegeable from a science point of view, and also living with the bug.  Oh, sorry, there are several people on this site who qualify for that description, but most have tired of posting because of reasoning like yours.

[Moffie65]

I am really sorry Ann, but on this one, we will agree to disagree.  I personally don't know why you are waiting to take meds, but then I respect your decision, and will not try to pursuade you otherwise.  You certainly know all the facts, and I do hope you reconsider soon. 

Love ya.

[Miss Philicia]

but the European and UK guidelines say that it isn't necessary to start above 350 unless there are other problems present.

Which was the purpose of replying to the opening post in the first place -- he wanted to know if skin issues would diminish by starting meds.  It's also unclear whether or not he's US or UK, but seeing as how the majority on this forum by a large margin are US, it's safe to make the assumption until the OP claims otherwise (unless I'm missing where he said he was in the UK).

[Ann]

Moffie, reasoning like mine? You mean the reasoning of the hiv experts in Europe and the UK. We have smart people on this side of the pond too you know.

I may not have been living with hiv for 27 years, but 13 years isn't exactly a short time either. I'm living proof that meds aren't always necessary. When my counts say I need to start, I will, but until then I'm going to enjoy being med free - and healthy.

Miss P, the skin issues the OP is talking about aren't the sort of problem that would necessitate his starting meds from the European or UK point of view. Did you look at the links I supplied? And by the way, I can confirm the OP is posting from somewhere in Europe.

[Miss Philicia]

Miss P, the skin issues the OP is talking about aren't the sort of problem that would necessitate his starting meds from the European or UK point of view. Did you look at the links I supplied? And by the way, I can confirm the OP is posting from somewhere in Europe.

That's cool -- but my point was that the OP asked.  It's not like people here are making up things just to argue.

Nice to know his location, though of course he didn't disclose it so in the same manner as pertains to this thread any discussion of CDC differences was still relevant until we all knew where she/he lived.

At any rate, I'd still say CDC guideline discussion is relevant as past history shows that generally the Euros follow -- we can bet money on this if you so desire, my dearest one.

[buffaloboy]

'''Personally, I don't care what they say in the UK, or the CDC for that matter...''

This is now going into the realms of the absurd. You've called people who disagree with your views 'denialists' and yet you then say that you don't care what BHIVA or CDC (who've you've labelled as 'corrupt') have to say on the matter, who issue guideline to doctors.

So how ironic that, in effect, you are saying that patients should ignore their doctors because the advice they are giving them is not in their best interests. That sounds very close to a 'dissident'/'denialist' argument to me, and goes some way in explaining why there's still so much confusion around HIV treatments especially amongst people who are newly diagnosed.

[Ann]

At any rate, I'd still say CDC guideline discussion is relevant as past history shows that generally the Euros follow -- we can bet money on this if you so desire, my dearest one.

Well, as I said earlier, the European/UK guidelines aren't really all that different to the US ones. We need to remember that the US guidelines don't say to start AT 500, they say to start BETWEEN 350 and 500. That means one could wait until they were around 350 - consistently - before starting and still be within the guidelines.

When the results of the START study are published, maybe our guidelines will be changed to BETWEEN 350 and 500 instead of AT 350. Who knows. What I DO know is that I will wait until my counts are consistently around 350, or I start having problems, regardless of the guidelines. What others do is their business.

[Miss Philicia]

Well, as I said earlier, the European/UK guidelines aren't really all that different to the US ones. We need to remember that the US guidelines don't say to start AT 500, they say to start BETWEEN 350 and 500. That means one could wait until they were around 350 - consistently - before starting and still be within the guidelines.

When the results of the START study are published, maybe our guidelines will be changed to BETWEEN 350 and 500 instead of AT 350. Who knows. What I DO know is that I will wait until my counts are consistently around 350, or I start having problems, regardless of the guidelines. What others do is their business.

Guess you missed my earlier post

So instead of recommending 350 as the cut off, they now say between 350 and 500.  Basically this means not to keep waiting until you're at 350.

[buffaloboy]

What I DO know is that I will wait until my counts are consistently around 350, or I start having problems, regardless of the guidelines. What others do is their business

I think this is the point. Presenting treatment in terms of rigid 'rules', as some people on here are inclined to do, doesn't help anyone. It's ultimately an individual choice and no amount of hectoring by people who claim to have good intentions, or decades of 'first hand experience', should, or will, change that.

[Nestor]

I am really sorry Ann, but on this one, we will agree to disagree.  I personally don't know why you are waiting to take meds, but then I respect your decision, and will not try to pursuade you otherwise.  You certainly know all the facts, and I do hope you reconsider soon.  

Love ya.

Ann can speak for herself, as can the OP.  I can tell you one reason why I am waiting; a full discussion can wait until I have time to start my own thread on the subject, so as not to hijack this one.  The reason is articles like this one--and as everyone knows who has been reading this website for any amount of time, it is but the latest example of several I could have chosen:  

http://www.aidsmeds.com/articles/renal_kidney_tenofovir_1667_18041.shtml

The point appears to be that with every year on meds, one's risk for kidney failure increases.  That would appear to me to be a powerful argument for giving oneself a few more years before starting--not, of course, to the point of waiting for dire numbers.  

Moffie, you have made a good case here:

Once the immune system is damaged from depletion of CD4s, it never, I said never, will work the way the original Immune system worked in a body.  Naive immune cells which are grown after starting HAART, don't ever have the same immune capability that the ones you grew while in childhood.  Why the hell would you ever encourage anyone to delay the start of meds, while their immune system continues to die.

These are important things to keep in mind, although my own doctor seems to feel that the dangerous depletion of memory-cells begins to occur below 350, not above.  What is your definition of an immune system "damaged by depletion"?  The numbers Lifer quotes do not suggest "depletion" to me; neither do Ann's.

The adverse effects of long-term HAART and those of the unchecked virus both need to be kept in mind, and some balance struck between them.  I agree that waiting until 100 t-cells is dangerous.  But to start ARVs needlessly, with decent numbers and at a time when one might very well have a chance for years of med-free life, strikes me as being every bit as foolhardy.  When we have people walking around who have been on atripla or isentress for 30 years we'll have some actual information to go on; until then we're all stuck with intuition and half-truths.  

Lifer's numbers are borderline and, most importantly to me, seem stable, not declining.  In the absence of percentage, that looks to me like a wait-and-see situation.  The skin problem is not in itself a reason to start HAART unless Lifer has a strong intuition that his body is telling him that the time has come and that the skin problem is the handwriting on the wall.  In that case, I would certainly not advise him not to start.  

[Miss Philicia]

What I DO know is that I will wait until my counts are consistently around 350, or I start having problems, regardless of the guidelines. What others do is their business

I think this is the point. Presenting treatment in terms of rigid 'rules', as some people on here are inclined to do, doesn't help anyone. It's ultimately an individual choice and no amount of hectoring by people who claim to have good intentions, or decades of 'first hand experience', should, or will, change that.

Well hello there Captain Obvious -- of course it's a personal choice.  Nobody is going to stand over someone with 50 t-cells and ram pills down their throat.

[Nestor]

Furthermore, may I urge, beseech, and beg Lifer and everyone who is interested in this question to read the following article?  

http://www.poz.com/articles/180_944.shtml

The new guidelines and the articles surrounded them and the massive cohort study upon which they were based I have read with acute interest.  They present many more questions than answers, to me at least.  The above article, which shows where we were "the day before yesterday", suggests, to me, a dose of caution before zealously embracing the latest trends.  

A few lines that stand out to me:

"If nothing else, these treatment newbies could have waited a few years for kinder, gentler options."

That's it--who knows what 2012 or 2013 will bring?  If holding out until 2013 means starting with a far better treatment option than any that is available now, then won't it have been worth it?  

"I kick myself now because I fell for the party line and put patients on treatment when they didn't need it," Keith Henry says. "What we were doing was just not good medicine."

Of particular interest  to those who seem to think that Americans have greater wisdom that Europeans:

Across the Atlantic, the European medical community was taking a sharply different approach. Treatment typically wasn't initiated until patients' CD4s fell below 350 -- whereas the U.S. guideline, set in 1997, put the threshold at 500. When European HIVers did finally begin treatment, they were often given a non-nuke regimen. "We were pretty keen on the NNRTIs over here from the get-go," says Brian Gazzard, MD, a leading professor of HIV medicine at Chelsea Westminster Hospital in London. Some 80 percent of his patients have stayed on non-nuke regimens for at least two or three years.

According to Gazzard, it wasn't that Europeans knew better -- they just knew what they didn't know. The assumption in the U.S. was that HIV was like any other infectious disease: You threw as much medicine at it as you could, and eventually it would be subdued -- or eradicated. "We realized that there was no evidence that this was true for HIV," says Gazzard. So the Brits doled out drugs more sparingly. Treatment strategies were designed from the first with an eye on the long term.

Little of this Old World wisdom managed to cross the pond. Here, not only magazines (such as POZ) but bus shelters and subway cars were papered with protease ads. Physicians too were heavily marketed. Antiretrovirals became a $1 billion-a-year business. AIDS doc Keith Henry recalls being told repeatedly at pharma-sponsored seminars that the goal of treatment was undetectable viral load. "They were pressuring us to give out these drugs," he says. "They made it seem like it was almost malpractice not to put people on PIs if they had a detectable viral load."

I do not see how anyone can read this and say that the Europeans are following us!

And most importantly of all:

Last year, the U.S. government lowered the "start HAART" time from 500 to 350 CD4s -- finally bringing us in line with the cautious Brits. "Who was right in retrospect? The British," says Miles. "Were we too proud to recognize this in 1997? Probably. Should patients take what we say with a grain of salt now? Yes."

That's just what I'm doing with the new guidelines and all the emotional imperatives (Start ASAP!!!!) that some people like to fling about: I'm taking them with a grain of salt.

[Miss Philicia]

Nothing like a link that is almost a decade old.

[Nestor]

Nothing like a link that is almost a decade old.

I would question the sanity of someone who did not want to know where we were, as I put it when I introduced that link, "the day before yesterday."  If we do not remember history we are doomed to repeat it. 

That perhaps explains why we are, in fact, repeating history right now--going back into "hit hard hit early" as if we hadn't already been there, done that, and learned the lessons: because there is a culture of never remembering anything that's more than six months old. 

In fact I am deeply troubled by the apparent amnesia of some people who believe our doctors and researchers can do no wrong.  There they were, a mere eight years ago, saying that the last time they'd put out all this "start now start now start now" pressure they'd been grievously mistaken.  They themselves are saying "in future, take what we say with a grain of salt." 

[Matty the Damned]

Last time I checked western orthodox medicine shifted on a fulcrum called "informed consent" - you know that crazy idea that your doctor can only advise you on a particular course of treatment.

The ultimate fucking choice rests with the patient.

Makes things pretty fucking simple. For those who are worried that their doctors might be total fucking idiots, you're free to delay treatment until you're ready.

MtD

[buffaloboy]

Well hello there Captain Obvious -- of course it's a personal choice.  Nobody is going to stand over someone with 50 t-cells and ram pills down their throat.

I didn't say that anyone was suggesting that. But some people here would do well to be less dogmatic in their approach if they are genuinely interested in helping.

[Miss Philicia]

I would question the sanity of someone who did not want to know where we were, as I put it when I introduced that link, "the day before yesterday."  If we do not remember history we are doomed to repeat it. 

Yeah, it's not like I was on meds in 2002 or anything.

[jkinatl2]

I submit that some folks are more dogmatic because of the depth and breadth of their personal experience. People who saw hundreds of people die before HAART are forever marked by that experience. Just like people who managed to miss that dreadful time, yet saw people's lives (or their own) devastated by the first generation(s) of HAART are forever affected by THAT experience.

When to take meds is a seriously personal decision. And until someone is ready to seriously commit not only to the regimen (adherence, means to afford it, et al) but also to the degree of critical thinking which is absolutely essential to investigating the regimen, then they stand a chance of setting themselves up for failure.

I certainly wish that critical thinking had not been abandoned by public school systems in the late seventies, here and abroad. Socratic methodology seems virtually absent in today's world, and that seems to be very evident by the often hysterical interpretation of drug precautions seen in these forums - and on the other end of the spectrum, the absolute neglect to investigate these powerful drug therapies until  unwanted effects begin to emerge.

It's simply too important a decision to make without the necessary information. And part of that necessary information is determining the validity and relevance of the sources, and the advent of critical thinking.

Any other method would be, in my opinion, a flippant response to an important situation. While soliciting information and opinion from those who are treatment-experienced is great part of the process, it is only that - a part of the process. The virus reacts differently in everyone, subject to a myriad of variables from lifestyle, robustness of the existing immune system (and the strength/strain of the attacking virus) and environmental/economic variances.

I guess the trick on forums like this is interpretation. There are people so afraid of medical intervention and who cling to each and every case study of drug impact that they not only refuse to consider the meds, but advocate that refusal for others.

On the other end of the spectrum, there are people who do not question medical authority for a moment, but dogmatically advocate treatment regardless of the consequences.

And yes, a third extreme seems to be emerging; those who have experienced both ends of that spectrum, and are equally dogmatic about medical intervention, while at the same time questioning medical advice at every turn.

I consider myself a skeptic. I use a doctor because I trust that s/he is trained and informed to a degree that I am not. Not only about HIV and the meds used to treat it, but also about the human metabolic system, the advances in epidemiology, and the emerging sciences based not only on accessible human trials but in vitro studies as well as simian experimentation. Now, I have not always had that faith well placed. I have a few horror stories, as anyone who has a serious and chronic disease for over a decade can attest.

But those horror stories, while educational (to me at least) and entertaining at parties, are not the norm. They are the exception - but they have mandated that I stay on my toes as regards this disease and the meds used to treat it. They have also forced me to make very real assessments  of my own lifestyle, my own mental and physical health, and the obstacles and issues I bring to the medical table. I could only suggest that others try and do the same. Some of those issues are not evident to my doctor when we first begin our relationship. And some are very, very important.

Everybody wants to be the perfect patient, and make the best choices. But no one is, and no one always does. Being honest with that fact is the first step towards entering in a real, and realistic relationship with the medical community.

Thing is, the virus has a bad habit of not waiting around for us to make those important self-discoveries, for us to vacillate indefinitely, or for the perfect solution to present itself.

Empirical and anecdotal experiences are valuable tools. The third thing, the umame of health care, is self-awareness. Many people die - or do irreparable damage - waiting for that third part to manifest.



*edited for grammar and typos

[Matty the Damned]

JK, I love you so much. 

MtD

[Moffie65]

Thank you JK.  Your words are apropos

[buffaloboy]

http://www.poz.com/articles/180_944.shtml

Nestor: thanks for the link. If nothing else, it shows the extent to which medicine is as much an art as it is a science. The article was apposite in terms of providing context for this discussion and I'm sure many will readers will find it informative and interesting.

[Matty the Damned]

http://www.poz.com/articles/180_944.shtml

Nestor: thanks for the link. It was apposite in terms of providing context for this discussion and I'm sure many will readers will find it informative and interesting.

POZ magazine? Pffft!

MtD

[Miss Philicia]

omg, it's like the newest generation of HIV meds doesn't even exist to some people here

Bring it on with those 8 year old articles!

[buffaloboy]

POZ magazine? Pffft!

MtD

Huff and puff as much as you like if you think it will make a difference to anybody (which it won't).

[Matty the Damned]

Huff and puff as much as you like if you think it will make a difference to anybody (which it won't).

Oh settle the fuck down. I'm just having a little troll. Next time I'll put in a smileh, so you can tell.

Seriously read what JK posted above. He has teh wisdom. You should learn from him.

MtD

[buffaloboy]

Oh settle the fuck down. I'm just having a little troll. Next time I'll put in a smileh, so you can tell.

MtD

I love the way that those who advocate starting treatment NOW, are the ones whose feathers  are well and truly ruffled. It's very telling.

[Nestor]

Yeah, it's not like I was on meds in 2002 or anything.

Ummm...do you think I posted that article solely for your benefit? I know you already know all about HIV in 2002--you were there.  I posted it for people like myself, who are relatively new to this and are trying to learn as much about it as we can.  Every shred of information is useful.  

omg, it's like the newest generation of HIV meds doesn't even exist to some people here

I really hope you weren't directing that to me.  I know so much about atripla and isentress I could give a lecture on them.  I made it my business to gather that information because I want to be educated on possible treatment options before the knowledge becomes necessary.  If my t-cells crash tomorrow I may not be in the physical or mental state to gather it then.  

I know you were not directing it to BuffaloBoy, who has had personal experience with the newest generation of HIV meds. 

To the degree that the article discusses the specific problems of protease inhibitors and the early history of non-nukes, yes, it is of purely historical interest: but even that is not to be sniffed at.  Obviously I posted the article because of its larger point: guidelines and the people making them are very fallible.  To say that all the lessons and cautions of that article should be thrown out the window with this latest set of guidelines, we would need to argue that somehow everything in the larger scene has changed since then.  That case has not been made convincingly, to say the least.  

Bring it on with those 8 year old articles!

Well, sorry, I don't happen to have any other 8 year old articles which are a propos to this discussion...but here is something almost as good: a five-year-old interview with our very own Dr. J. Sonnabend, whose blog has recently enriched Poz.com.  The whole interview should be studied with care by every person who is living with HIV, but the relevant part to this thread is the following.  The context is the extreme success of Dr. Sonnabend's patients:

BH: This is surprising since the conventional wisdom says that if you've been treating gay men for a long period of time, they've gone through a lot of different regimens and they end up resistant to everything. So what was different about the way you were treating them?

JS: It may have to do with what I have not done. First, I have not started people on treatment too early. When the original version of the treatment guidelines came out I thought they were very, very wrong headed. I wrote a response — I suggested that the way we resolve clinical uncertainly is by doing proper trials, not by issuing guidelines. HIV medicine had already moved somewhat away from the traditional way of trying to find answers by doing many well-designed trials and was moving toward relying on the consensus of a panel of experts.

I thought they seemed to be gazing into a crystal ball as to the long-term effects of therapy. If these drugs were known to be completely non-toxic, it wouldn't be a problem. But the potential toxicities could not have been known then, and of course since then problems have come up; lipodystrophy, diabetes, etc.

So the drugs are quite potent. And the one thing an experienced doctor would think about, I believe, in deciding whether or not to intervene in a patient is the rate of progress of the disease in that particular patient. One of the striking things about HIV is the huge variation in the rates of disease progression. But what those guidelines did was to ask one to make a decision based on a snapshot. Well, we know about blips in viral load; fluctuations in CD4 counts; we know about all sorts of things that say a snapshot does not provide enough information.

The fact is there are no emergencies in HIV medicine — with the exception of people with very low T-cells, of course. But if you're dealing with anybody above 200, there's no emergency; it's not life and death, and you can wait a little while to get a fuller picture. So I think what may have been important in my practice was that I didn't follow the guidelines as they were written when they first came out. As it turns out, more recent revisions of the guidelines seem to be a little bit more in accord with what I actually did.

BH: What would you do?

JS: I would suggest starting treatment at a time when there was a consistent increase in viral load over maybe six or nine months; a decline in CD4 cells; or development of symptoms, whether it be thrush or some other. So it was individualized, and I think it is very important to individualize treatment to the rate of progress. In effect that translates into not staring early. I would start patients where there were stable signs of progression. There were other cases where people were worried and wanted to start treatment and of course I didn't withhold it.

The full interview--all of which is a must-read--can be found here: http://www.aegis.com/pubs/gmhc/2005/GM190903.html

JKinatl, what a fantastic statement!  Really a lot to think about there.  

Lifer--I really hope you do not feel that we have hijacked your thread and run away with it.  The fact is that the "when to start" question is of overwhelming, life or death importance to all of us.  And since the introduction of the new guidelines, a major discussion has been taking place between those who trust those guidelines and those who question them; that discussion is nowhere near finished and it tends to burst forth anew in every thread by someone questioning whether his or her time to start has come.  For those of us who have not yet started, our entire future in the only life we have on this earth hangs in the balance; for those who are already on treatment there is obviously a selfless aspect to the vehemence of their advice.  I don't agree with everything Moffie and the other members of the "START ASAP" team are saying, I certainly don't appreciate some of the saltier remarks they've flung at those of us who disagree with them (denialists?  seriously?) and I sometimes get irked by what seems like an "invasion of the body-snatchers" scenario in which everyone who has started meds himself suddenly starts urging everyone else to start immediately too.  But I really, really, really appreciate the time, the energy, and the passion which they put into helping us make the decision that for them is over and done with.  I think we are all intensely aware of what the virus could be doing in our bodies.  When we have people walking around who have been on atripla for thirty years, then we'll know the other side of the coin.  Until then we're really all groping in the dark and I hope we all have the humility to admit that.  

[buffaloboy]

 ''I don't agree with everything Moffie and the other members of the "START ASAP" team are saying, I certainly don't appreciate some of the saltier remarks they've flung at those of us who disagree with them (denialists?  seriously?) and I sometimes get irked by what seems like an "invasion of the body-snatchers" scenario in which everyone who has started meds himself suddenly starts urging everyone else to start immediately too''

This is extremely well put, especially the part of text that I've highlighted in bold. There's curious 'I'm on meds, so you must be too' mentality on these forums, and as this thread shows, some even urge eschewing official guidelines to start medication. I'm slightly less charitable than Nestor in my assessment of this and am not entirely convinced that it comes from a place of 'love'. Rather, it seems to be fuelled more by a sense of being unable to tolerate any differences within the subculture of people living with HIV - which is a feature of many minority groups.

All this matters because I'd always worked on the assumption that this website was  a place for all people with HIV to come and share their experiences, but I'm beginning to wonder how many people give up here because they get fed up with the one note advice to start meds immediately ('If you're not on meds, you're not welcome in the club'), no matter how inappropriate that may well be to someone's individual circumstances.

[Matty the Damned]

''I don't agree with everything Moffie and the other members of the "START ASAP" team are saying, I certainly don't appreciate some of the saltier remarks they've flung at those of us who disagree with them (denialists?  seriously?) and I sometimes get irked by what seems like an "invasion of the body-snatchers" scenario in which everyone who has started meds himself suddenly starts urging everyone else to start immediately too''

This is extremely well put, especially the part of text that I've highlighted in bold. There's curious 'I'm on meds, so you must be too' mentality on these forums, and as this thread shows, some even urge eschewing official guidelines to start medication. I'm slightly less charitable than Nestor in my assessment of this and am not entirely convinced that it comes from a place of 'love'. Rather, it seems to be fuelled more by a sense of being unable to tolerate any differences within the subculture of people living with HIV - which is a feature of many minority groups.

All this matters because I'd always worked on the assumption that this website was  a place for all people with HIV to come and share their experiences, but I'm beginning to wonder how many people give up here because they get fed up with the one note advice to start meds immediately ('If you're not on meds, you're not welcome in the club'), no matter how inappropriate that may well be to someone's individual circumstances.

No one here can make you do anything. Either take the pills or don't take them. It's a matter for you and your 85 CD4 cells.

Personally I hope you do take the pills. My life would be so much less fulfilling if you weren't around to harrangue me.

MtD

[Miss Philicia]

''I don't agree with everything Moffie and the other members of the "START ASAP" team are saying, I certainly don't appreciate some of the saltier remarks they've flung at those of us who disagree with them (denialists?  seriously?) and I sometimes get irked by what seems like an "invasion of the body-snatchers" scenario in which everyone who has started meds himself suddenly starts urging everyone else to start immediately too''

This is extremely well put, especially the part of text that I've highlighted in bold. There's curious 'I'm on meds, so you must be too' mentality on these forums, and as this thread shows, some even urge eschewing official guidelines to start medication. I'm slightly less charitable than Nestor in my assessment of this and am not entirely convinced that it comes from a place of 'love'. Rather, it seems to be fuelled more by a sense of being unable to tolerate any differences within the subculture of people living with HIV - which is a feature of many minority groups.

All this matters because I'd always worked on the assumption that this website was  a place for all people with HIV to come and share their experiences, but I'm beginning to wonder how many people give up here because they get fed up with the one note advice to start meds immediately ('If you're not on meds, you're not welcome in the club'), no matter how inappropriate that may well be to someone's individual circumstances.

Oh please, Mary -- people here urge you to be on meds because you had 85 t-cells five f*cking months ago -- dare I ask if you've had those numbers checked out again since then?  Let's just cut the crap.

No wonder you've had four doctors in the past year write you off as a troublesome patient. 

[Moffie65]

Personally, I don't give a damn if anyone starts medications, ever!   However, when you come to an HIV forum, and ask questions; I answer with my pesrsonal views, and seldom ever look up references for my opinions.  They were formed from years of watching my personal circle of friends DIE EXCRUCIATING DEALTHS FROM THIS DISEASE, and intense study of the science of HIV.  If you don't want to take meds, great, many people have made that decision, and are now dead.  Why do you think I spend my time here in the first place??  It would take an imbicile to think I do it to spread some sort of a "pro drug" campaign.  I just cannot see waiting to let your immune system be destroyed as I had to do.  You people that are critical of my opinions are wasting your time, they were arrived at over years of this disease, and they are MY opinions only.  Please, if you don't like or want to take  meds, please feel free to do so.

[buffaloboy]

Oh please, Mary -- people here urge you to be on meds because you had 85 t-cells five f*cking months ago -- dare I ask if you've had those numbers checked out again since then?  Let's just cut the crap.

No wonder you've had four doctors in the past year write you off as a troublesome patient. 

See. There you go. You're too irrational to stick to the general discussion and you resort, instead, to personal attacks.

That type of puerile behaviour means that you've now lost the argument and your credibilty is in tatters.

[Moffie65]

See. There you go. You're too irrational to stick to the general discussion and you resort, instead, to personal attacks.
That type of puerile behaviour means that you've now lost the argument and your credibilty is in tatters.

Hey Buff.
There is NO arguement here, just the facts of a DEADLY disease.  You are the one that wants to argue about everything about HIV.  Stop already!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[Miss Philicia]

See. There you go. You're too irrational to stick to the general discussion and you resort, instead, to personal attacks.

That type of puerile behaviour means that you've now lost the argument and your credibilty is in tatters.

Providing context in a thread is not a personal attack, no matter how much you want to deflect. 

[Hellraiser]

So let's get back to the topic at hand.  Whoever the OP is is probably as confused as ever.  HIV definitely causes skin issues.  In my experience they were linked to my failing immune system.  Once the immune system was fixed they've gone away that's been the experience of multiple people here.  HAART does bring some other issues, but you're at the level now where the benefits outweigh waiting any longer to begin.

[buffaloboy]

Personally, I don't give a damn if anyone starts medications, ever!   However, when you come to an HIV forum, and ask questions; I answer with my pesrsonal views, and seldom ever look up references for my opinions.  They were formed from years of watching my personal circle of friends DIE EXCRUCIATING DEALTHS FROM THIS DISEASE, and intense study of the science of HIV.  If you don't want to take meds, great, many people have made that decision, and are now dead.  Why do you think I spend my time here in the first place??  It would take an imbicile to think I do it to spread some sort of a "pro drug" campaign.  I just cannot see waiting to let your immune system be destroyed as I had to do.  You people that are critical of my opinions are wasting your time, they were arrived at over years of this disease, and they are MY opinions only.  Please, if you don't like or want to take  meds, please feel free to do so.

Moffie:

Are there any posts where you don't reiterate your lengthy first hand experience of 27 years knowledge of HIV? Yes, it's important and not to be dismissed but do you need to make the point over and over?

Perhaps you're not aware of how patronising it can sound at times.....

[Hellraiser]

Moffie:

Are there any posts where you don't reiterate your lengthy first hand experience of 27 years knowledge of HIV? Yes, it's important and not to be dismissed but do you need to make the point over and over?

Perhaps you're not aware of how patronising it can sound at times.....

Please stop trying to cause arguments dude.

[buffaloboy]

Providing context in a thread is not a personal attack, no matter how much you want to deflect.  

Don't fool yourself.  One thing you are definitely NOT doing is 'providing context'.

[veritas]

buffaloboy,

One of the most difficult side effects to being HIV positive is inflamation. I'm sure you have read how HIV+ patients age more quickly than those who are HIV-. The more virus in your body, the more your immune system is turned on causing inflamation on a constant basis. Inflamation and aging has been discussed in a few threads. Inflamation can lead to a variety of unwanted conditions, including skin problems. Read this link which gives a pretty good overview of inflamation and the bad things it can do:

http://www.womentowomen.com/inflammation/whatischronicinflammation.aspx

Then read this link:

 http://www.ias2009.org/PAGMaterial/MOPL104_El-Sadr_1.ppt

The above shows the paradigm shift for HIV and inflamation. The longer one allows inflamation to run wild in their bodies, the more harm being done overall.


Of course starting meds is a personal decision, however, that decision should take into account all variables.
Letting hiv run wild in your body is not a good thing and inflamation is only one issue.

Starting meds seems prudent to me.

v

[buffaloboy]

Veritas:

Yes, I am aware of the inflammation issue, but, to date, the guidelines have not been altered to urge people starting at any CD4 level. There may well come a time when that does happen, but that day has not arrived yet.

[Moffie65]

Moffie:

Are there any posts where you don't reiterate your lengthy first hand experience of 27 years knowledge of HIV?
Perhaps you're not aware of how patronising it can sound at times.....

#1, Yes
#2, Don't give a shit.

[veritas]

buffaloboy,

That's certainly your decision. I hope, for your sake, that you don't wait too long before something irreversible happens. But whatever you decide ----  Good Luck!

v

[buffaloboy]

#1, Yes

Really? They seem rather thin on the ground. Perhaps you could do this a little more frequently.

#2, Don't give a shit.

Maybe it's time that you did.

[buffaloboy]

buffaloboy,

That's certainly your decision. I hope, for your sake, that you don't wait too long before something irreversible happens. But whatever you decide ----  Good Luck!

v

No one on this thread knows anything about my current state of my health; Miss Philcia threw that in here because he/she is incapablle of having a discussion without personalising it and resorting to cheap shots. It would be better if people here ignored him/her, until she's able to contribute something more more meaningful than her vacuous trolling.

[Rev. Moon]

#1, Yes

Really? They seem rather thin on the ground. Perhaps you could do this a little more frequently.

#2, Don't give a shit.

Maybe it's time that you did.

My gawd, you just don't give up, do ya?  Have you noticed how you are alone in this battle against the other members? At least Nestor presented an intelligent approach to his statement. You, on the other hand, sound rather ignorant, juvenile, and unnecessarily aggressive.
 
Stop it and be blessed already.  Your hijack of this thread has become tiresome and offensive.   

My apologies to the OP for the childish behaviour of this well-established member.

[veritas]

No one on this thread knows anything about my current state of my health; Miss Philcia threw that in here because he/she is incapablle of having a discussion without personalising it and resorting to cheap shots. It would be better if people here ignored him/her, until she's able to contribute something more more meaningful than her vacuous trolling.

Buffaloboy,
Did you not post the following back in January:

"I've been hospitalised by pneumonia once for a week in 2008, and had subsequent bouts of it ever since, my last CD4 count was 84, I suffer with depression, and have been signed off from lookiing for work (I was not working at the time) until April by my doctor as he considered me to ill to work."

Either you forgot what you posted or you weren't telling the truth.

I won't respond to you anymore.

v

[buffaloboy]

My gawd, you just don't give up, do ya?  Have you noticed how you are alone in this battle against the other members? At least Nestor presented an intelligent approach to his statement. You, on the other hand, sound rather ignorant, juvenile, and unnecessarily aggressive.
 
Stop it and be blessed already.  Your hijack of this thread has become tiresome and offensive.   

My apologies to the OP for the childish behaviour of this well-established member.

And yet you won't stand up against the personal attacks, accusations of 'denialism' and general aggression of the 'start treatment NOW' camp?

What's good for the goose aint so good for the gander, eh? Some people are more equal than others? Or, in short, downright hypocrisy.

 

[buffaloboy]

Buffaloboy,
Did you not post the following back in January:

"I've been hospitalised by pneumonia once for a week in 2008, and had subsequent bouts of it ever since, my last CD4 count was 84, I suffer with depression, and have been signed off from lookiing for work (I was not working at the time) until April by my doctor as he considered me to ill to work."

Either you forgot what you posted or you weren't telling the truth.

I won't respond to you anymore.

v

I said my 'current' state of health.

[Ann]

As this thread has degenerated into nothing more than an argument - complete with several members pushing the envelope regarding thinly-veiled personal attacks - I'm just going to lock the darn thing. I don't feel like babysitting tonight and I absolutely do not have the energy to dig through and warn each and every member involved.  I just had an emergency tooth extraction today, the dentist was very rough and I feel like shit. Sorry.