So much conflicting info

[tednlou2]

I asked a question of Dr. Gallant that he answered.  I'll post it below.  I went to the website he referred me.  I read through the PDF about treatment.  It makes a person so confused.  It says untreated HIV can lead to heart and other organ problems.  Then, it says the meds may very well cause these same illnesses.  It says many other things, too, that are like a game of tennis--watching the ball go back and forth.  I had never been to this site, so I thought some may find the info beneficial.  Many of you will already know this info.

Health of HIVers with good numbers

Joel E. Gallant, M.D., M.P.H.

Posted on Jan 21, 2010
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When to start meds is a huge decision for everyone--especially those with pretty good numbers. I'm wondering how often have you seen in your practice or heard about HIVers not on meds with CD4s above 500, maybe even close to 1000, get sick with some HIV related illness? How about die from that illness? I know we all focus on CD4 200 as the danger zone. Do those I've described, including myself, have a false sense of security with high CD4? If you have seen it, is it very rare for someone with CD4 over 500 to get really sick with HIV illness?

On Jan 22, 2010 Joel E. Gallant, M.D., M.P.H. replied:

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It's not common to get sick, especially with an HIV-related illness at CD4 counts above 500. However, I have seen patients develop some of the conditions that are less dependent on CD4 count at this level, including lymphoma and Kaposi's sarcoma. However, one of the main reasons to consider starting therapy at CD4 counts above 500 is to prevent long-term complications that could occur many years down the road. Untreated HIV infection at any CD4 count is associated with a state of heightened inflammation and immune activation. This is not good for you, and may increase your long-term risk of heart disease, cognitive dysfunction, and malignancy, just to name a few. For more information on this topic, I'd highly recommend that you read the section on when to start therapy in the latest version of the DHHS Guidelines at www.aidsinfo.nih.gov/Guidelines/.

[mecch]

What is your question exactly?
Are you wondering if long-term HAART use will lead to the same problems as long term active HIV infection?
From what I understand, you are talking apples and oranges.
Also, current HAART is not toxic or poison and is not going to destroy my organs.

There are so many knowledgeable members here I think you need to narrow your post down to specific questions and then you might get a good response.

[tednlou2]

I was just posting the Q&A between Dr. Gallant and myself about benefits/risks on when to start meds.  I also thought the link he gave me may be helpful to some.  I was just saying that reading it left me just as confused.  Most experts will give you one pro to starting meds higher than CD4 500 and then give you a con.   

So, I wasn't really asking a question....just pointing out how confusing things are when it comes to meds. 

[skeebo1969]

So, I wasn't really asking a question....just pointing out how confusing things are when it comes to meds.  

  I understand where you are coming from.  When I was diagnosed my first labs were a Cd4 of 492.  At this time guidelines suggested starting meds when Cd4's went below 300.  My second labs showed a lot of improvement with a Cd4 of 674.  I was really under the impression at the time that I would not have to start meds for 2-5 years.  I was wrong.  I stressed myself out over some family/financial/health matters and it seemed to be the leading cause for my Cd4's spiraling downward.  When my labs indicated that my numbers had fallen to 113 in 9 months I was not prepared in the least for what my doctor made me do next.  Thank God for her.. Within hours I was at the pharmacy picking up my first bottle of Atripla with my sweaty hands along with a bottle of dreaded Bactrim.

  See I got myself into this false sense of security and was not the least bit prepared for what was to be the inevitable.  This is where I would like to advise you.  Very rarely is a person able to live the rest of their life with this bug without having to take meds.  I know you are aware of this just from reading your posts.  What I think you should do is really start preparing yourself for what will eventually happen.  I am not going to sit here and bullshit you and tell you hey it's no big deal, it's really easy, because deep down in side I know just like me there is only one way you will find this out and that is through your own experience.  Sorry for the long run-on sentence.  Anyhow....hang in there and keep asking questions, your doing fine kid.

[tednlou2]

Thanks Skeebo.  I'm trying to prepare myself everyday--think I'm stressing myself out too much trying to decide when to start.  I want to make sure I can be totally adherent.  I worry (from talking to others who started above 500) that I may feel good and think I don't need the meds.  I'm also in the process of getting the depression/panic attacks under control.  I actually had one eariler this evening.  I hadn't had one in a while and I'm not sure what triggered it.  I wasn't worrying about anything--at least I don't think I was.

So, I'm trying to get my mind in a place to except what is to come.  Sometimes, I think it would be better to start with higher numbers.  It just seems like it is going to be very depressing to watch those numbers drop and not have a choice.  With all the different expert opinions on this issue, I guess it really does come down to making the decision and not look back when ya do.   

[skeebo1969]

Thanks Skeebo.  I'm trying to prepare myself everyday--think I'm stressing myself out too much trying to decide when to start.  I want to make sure I can be totally adherent.  I worry (from talking to others who started above 500) that I may feel good and think I don't need the meds.  I'm also in the process of getting the depression/panic attacks under control.  I actually had one eariler this evening.  I hadn't had one in a while and I'm not sure what triggered it.  I wasn't worrying about anything--at least I don't think I was.

I remember those panic attacks for sure.   Looking back on it I wasted a lot of good days allowing myself to worry way too much, but unfortunately as you are finding out this is part of the process for many of us.  I remember I use to post in the forums how I hated not being able to roll over in bed in the morning and drift off back to sleep.  I couldn't do it because my mind would instantly be on my being infected..  Have you been able to yet?  If not it will come, or it will be replaced with that other crap like bill paying..lol

You are doing everything you can and everything you're supposed to do right now.  Outside of talking to someone about your fears, there is really nothing else you can do other than ride this thing out and see how it plays.  You've been to you doctor, gotten all the necessary bloodwork, and day-by-day gain knowledge on what it's going to take to live with this bug.   I hate to say it, but other than worrying about it there is nothing left... in time this will slowly diminish though. 

Keep talking... or posting rather, and  I hope you have a good day today.

[tednlou2]

I have come a long way over the last year.  Having said that, I still have many fears.  I know when I'm out doing stuff with friends, I can forget about being poz for a while.  If I should get some pain in my back, it reminds me of the pneumonia I had and I start to worry.  I've been having numbness in my fingers every now and then.  Now, I did have back surgery about 10 years ago and deal with back pain, so it is probably just some pinched nerve and I need to have my brother give me an adjustment.  Still, I begin worrying if this is what people talk about when they say they have neuropathy.  This virus really plays with your head.

To answer your question, I usually wake up feeling very good.  Then, I remember I have this virus.  If I focus on it, I start feeling bad.  This is why I think it is all mental.  If it were really physical, I would think I would wake up feeling bad.  It is usually only after I allow myself to focus on bad stuff that I start feeling bad. 

I mentioned I had a bad panic attack last night.  I couldn't figure out why--although a panic attack never really needs a reason.  I remembered my back was hurting while out at dinner and I did focus on what it was.  I also ran into a former co-worker.  I have worked in TV news here in Louisville at 2 different stations.  I found myself missing working there and thinking I made a mistake leaving.  I think that had an effect, too.

Anyway, thanks for caring.       

[leatherman]

Hey ted!
I'm sorry to hear that you're still worrying so much (lordy let's hope around 50 you don't get diabetes too, or you'll be a mess. ROFL ) but I'm glad you're talking and working through some of your needless anxiety. I worry about a lot of things too; but only about the things I have control over. So as far as HIV, the only thing I can worry about is if I took my meds today. Every time you worry about something HIV-related you're actually hurting your tcells some from the stress, so not stressing about HIV would go a long way to helping you stay healthy.

Most experts will give you one pro to starting meds higher than CD4 500 and then give you a con.

and unfortunately, most all vets won't tell you when you should put your dog to sleep either. The reason a doctor isn't going to tell you exactly when is because it's your body, your health, and your decision. Just like a vet is going to let you make the decision about your pet. A doctor is going to give you the pros and cons, and hopefully you care enough about your health to study up, and then you call the shots and make the decision. Unless you absolutely have to go on meds because of being gravely ill, most doctors will hem and haw, because a patient that isn't ready to start, isn't going to stay adherent. Many docs like to give you the option so you'll get accustomed to how you'll need to stay compliant - and not because a doctor told you so; but because you want to.

and as I remind many people, be thankful you have the choice of when. Often times people get the HIV diagnosis, right along with an AIDS diagnosis in a hospital and told to take meds now or die.

Still, I begin worrying if this is what people talk about when they say they have neuropathy.

you do know you have to actually be taking meds to get neuropathy, right? PN in and of itself, is not a side effect of being positive. It's only a side effect of a few meds (and mostly meds from the old days)   

hugs!

[Fondoo]

   Reading you post reminds me about the time when I was newly diagnosed. It seemed whenever I was not stoned out of my mind all I could think about was death. One thing to remember is just hang on it will get better. Your heart and mind will naturally adjust in time. Looking back I see that getting stoned all the time actually extended the pain but that is just where I was at.
   I have been into yoga and meditation for the last few years and can testify there are allot of very helpful skills that can come from it.
Quieting the mind to help with decision making,helping you to be with the fear instead of trying to push it away to name a couple.
       Best wishes
              Tracy

[tednlou2]

I've heard a lot of people recommend yoga.  Maybe I need to look into it and get off my ass and start excercisng again. 

[tednlou2]

Well, I got my first cold or whatever it is since my diagnosis.  I've got the red, sore throat with so much drainage.  My voice is almost gone.  Last time I got sick, I ended up in the hospital and found out I was poz.  I'm trying to not freak out.  HIVers get sick like everyone else.  It was suggested I get some antibiotics.  I think they are often over-prescribed and I'm interested in seeing how well my immune system fights this cold on its own.  If it gets worse, I would definitely see the doc. 

I use to never get sick--never.  This is the first time in over a year, so that's not bad.  And, I did have someone here in the house who had a cold last week.  I think I got it from him.  Duh..right?

[Hellraiser]

If the cold is viral Anti biotics won't help anyway.

[phildinftlaudy]

I was diagnosed 09/08; started Atripla 12/09 -- w/cd4 473 and vl 2900, and was diagnosed in 01/10 (this month) with neuropathy.  Dr. says it happens with HIV and prescribed Lyrica --

[leatherman]

as i said in the other thread, don't sue until you know it's not pneumonia again

I used to worry a lot and was very germ-o-phobic in the years during and after my bout of PCP and then 2 yrs later with pneumonia. I mean, who would know that the symptoms of dying (with pcp or pneumonia) start off identical to looking like just plain ol' flu?  I've learned to be very scared of colds, fevers, and the "flu" until I either feel better or start puking once an hour for 6 hours in a row (cause that means I'm about to die of something and better get to the hospital quick!). I just didn't want to tell you about that so as to no add to your own state of worrying.

and speaking of your state of worrying, in that other thread one thing that some people are leaving out, but that I alluded to, is that skipping meds or stopping meds is NO guarantee of resistance forming. Yes those are the circumstances in which it may happen but if it happened 100% of the time we'd already know. PEP would never work, and after missing a few doses we would see Atripla users (with resistance) getting horribly sick.

relating that back to this thread, I don't see these things as "conflicting info" as much as since everyone's metabolism is different, nothing is 100% anyway.  Medical science is no way an exact science! Sometimes resistance happens, sometimes it doesn't. Sometimes people should start at 500 and sometimes there is no difference in waiting until 350. All you can do is weight the percentages and go with the better numbers. Think of how many of these meds never cause a single rash in thousands of people. There's really no way to know you'll be one of the 2% until your scratching your skin raw. 

[Hellraiser]

I believe PEP works without forming resistance because it eradicates the entirety of the virus in your body before you've seroconverted and before it's built up reservoirs, no?

[leatherman]

I believe PEP works without forming resistance because it eradicates the entirety of the virus in your body before you've seroconverted and before it's built up reservoirs, no?

sure! that's what we all hope. as I said though the catch is that all of us are different. there is no 100% guarantee that any of this (pep, hiv meds, heck even aspirin - which I just happen to be deadly allergic to!) is going to work for everyone 100% of the time.

Two yrs ago my partner had only slight symptoms that came on suddenly and went into the hospital, 70+ days later he passed with AIDS and non-Hodgkins lymphoma. While in the hospital with him those 60 days, I saw 6 people wheeled out in body bags and 6 people have going home parties cancer-free. My partner went through two rounds of chemo, and the tumors continued growing! There are no guarantees, just percentages. So you go with the numbers and hope you're in the right percent.

that's why I said it's not really so much "conflicting info". It's just that no one can truly say 100% anything with medical science. Thankfully, for most issues many of us are in the 99.9% categories.