Author Topic: Overseas Diagnosis (Read 27487 times)

dpb · « **on:** January 31, 2011, 07:59:17 pm »

Hello everyone,

My name is Daniel, and I was diagnosed with HIV on January 15, 2011 (on my mother's birthday, no less). I turned 23 years old last week. I'm in the military and currently stationed overseas, and I now find myself headed back home. I met a woman in April of 2010 and began a faithful, monogamous relationship. I experienced seroconversion in May of 2010 and was hospitalized, but the doctors didn't identify it. I had asked her to get tested twice. She told me her results were negative. She never disclosed her condition to me. I trusted her. Now she's out of the country, and won't answer my phone calls.

The worst part about all of this is being so far from my family - and still not being able to see a doctor. I'm waiting to be evaluated upon my return to the states (which will hopefully be within the next few weeks).

I guess if their is a bright spot in all of this, it's that I've been reassigned to a duty station in my native state, very close to my family, and that I'll be medically covered for life. I've spent less than 30 days home in the last two years. I didn't want to come back like this, but I've come to realize that their are no guarantees in life. I'm just trying to get through this.

Ann · « **Reply #1 on:** January 31, 2011, 08:34:25 pm »

Hi Daniel, welcome to the forums.

Too bad you had to end up here, but why didn't you use a condom? Your sexual health is YOUR responsibility and your responsibility alone. You cannot go by what someone thinks - or tells you- is their current hiv status, as you learned to your detriment.

You learned the hard way that you should have wrapped it up. Nevertheless, you'll be ok.

Ann

dpb · « **Reply #2 on:** January 31, 2011, 08:45:24 pm »

This was a long-term relationship. I knew she was taking birth control, and over time, I developed a strong sense of trust with her, as I think most people do. She failed to disclose her status, she lied about her status, and yes, I should have used protection, but I'm not going to blame myself entirely for this. I would've become complacent eventually because of that trust. So I don't think protection would've made much difference in this case. I trusted someone that I shouldn't have.

Ann · « **Reply #3 on:** January 31, 2011, 09:03:51 pm »

And? I also acquired my infection in a long term relationship. And I've only got myself to blame because I never insisted on testing together. Please take responsibility for your infection. It's the best thing to do. I say this with compassion, believe me.

Matty the Damned · « **Reply #4 on:** January 31, 2011, 09:09:24 pm »

Quote from: dpb on January 31, 2011, 08:45:24 pm

This was a long-term relationship. I knew she was taking birth control, and over time, I developed a strong sense of trust with her, as I think most people do. She failed to disclose her status, she lied about her status, and yes, I should have used protection, but I'm not going to blame myself entirely for this. I would've become complacent eventually because of that trust. So I don't think protection would've made much difference in this case. I trusted someone that I shouldn't have.

Hi Daniel,

Sorry to hear about the diagnosis.

Y'know, it's simpler in the long run not to apportion blame when it comes to HIV infection. It's a lose-lose situation. The thing is done now, and all you can do is get on with your life.

I know that's easy for me to say and the way you feel right now is quite understandable. But at some point you'll need to come to terms with your HIV positive status.

If it helps, you should know that HIV is not today the grim fate it was 15 or 20 years back. Treatment options are vastly improved -- and they continue to improve. It's entirely possible for you to have a lengthy, healthy and fulfilling life, particularly as you have good health care coverage.

Regards,

MtD

dpb · « **Reply #5 on:** January 31, 2011, 09:20:27 pm »

I appreciate the feedback.

No doubt, I know I am at fault. But it's also the responsibility of those infected to disclose their status to their sexual partners - it's criminal to do otherwise. Either way, as Matty said, what's done is done. I have come to grips with it. I'm ready to move on and learn how to live with this as best I can. That's why I posted here. I have a lot of questions and concerns, as I think most people do, and I'd much rather discuss those with the members here, rather than a reminder of who is at fault. Ultimately, you're right - we're responsible for our lives. I made a choice, I made a mistake, and I'm paying for it. Got it. Moving forward, because if I don't, I'm not going to make it living with that constant reminder in my head everyday.

Ann · « **Reply #6 on:** January 31, 2011, 09:25:10 pm »

Quote from: dpb on January 31, 2011, 09:20:27 pm

But it's also the responsibility of those infected to disclose their status to their sexual partners - it's criminal to do otherwise.

Just as it's criminal to not protect yourself. Criminalising hiv is a nasty business, as you may find out now that you're poz yourself.

You're going to be ok. Hiv isn't the death sentence it once was. Have you had any numbers back yet? Seriously, you ARE going to be ok.

dpb · « **Reply #7 on:** January 31, 2011, 09:30:34 pm »

I haven't had any numbers back yet. I haven't been medically evaluated yet. They've explained to me that it's a process and the first step is to get me stateside to a base with the proper treatment facilities before that can happen.

Matty the Damned · « **Reply #8 on:** January 31, 2011, 09:54:21 pm »

Quote from: dpb on January 31, 2011, 09:30:34 pm

I haven't had any numbers back yet. I haven't been medically evaluated yet. They've explained to me that it's a process and the first step is to get me stateside to a base with the proper treatment facilities before that can happen.

Yup.

There's a battery of tests they need to perform. CD4 counts which tell us how your immune system is doing. Viral Load which demonstrate levels of viral activity. These are the big ones. Then there are other biochemistry tests such as liver and kidney function and so on.

Remember that a single set of test results really don't reveal much. This stuff is all about trends over time. It can take some months to build up a clear picture of what is happening to you HIV wise.

The good news is that there is no need to hurry. You can (usually and within reason) take your time before you have to make any decisions about starting treatment and the like.

If you've not already done so, I'd suggest you check out our Lessons which give an excellent overview of HIV testing, monitoring and treatment.

Regards,

MtD

dpb · « **Reply #9 on:** January 31, 2011, 10:13:55 pm »

Thanks for the info Matty. I've actually done a considerable amount of reading on this disease since I was first diagnosed. I would like to start treatment as soon as possible. Adherence will not be an issue for me. Of course, I'm worried about the complications of HIV, as well as any possible side effects from the medication and its toxicity. I'm going to strictly follow my doctor's guidelines. I plan on taking a daily multivitamin and eating better. I get forced exercise through the military already and I'm in otherwise good physical condition. I don't drink or smoke (although I used to drink). I'm taking anti-depressants and speaking to both a psychologist and psychiatrist, as well as my immediate family members.

The hard thing for me is dealing with this thought of being ambitionless. Do I still plan on retirement? Do I still maintain my long-term goals? I know this gets easier with time as do all things, but this is a valid concern of mine.

Matty the Damned · « **Reply #10 on:** January 31, 2011, 10:26:01 pm »

Quote from: dpb on January 31, 2011, 10:13:55 pm

Thanks for the info Matty. I've actually done a considerable amount of reading on this disease since I was first diagnosed. I would like to start treatment as soon as possible. Adherence will not be an issue for me. Of course, I'm worried about the complications of HIV, as well as any possible side effects from the medication and its toxicity. I'm going to strictly follow my doctor's guidelines. I plan on taking a daily multivitamin and eating better. I get forced exercise through the military already and I'm in otherwise good physical condition. I don't drink or smoke (although I used to drink). I'm taking anti-depressants and speaking to both a psychologist and psychiatrist, as well as my immediate family members.

Sounds like an awesome plan.

Quote

The hard thing for me is dealing with this thought of being ambitionless. Do I still plan on retirement? Do I still maintain my long-term goals? I know this gets easier with time as do all things, but this is a valid concern of mine.

Well considering we have members here who can trace their infections back to the very beginnings of the Pandemic, I reckon you should maintain your long term goals. The likelihood is that you're going to be around for a while and in a fairly good state of health. Why not pursue your dreams?

First openly HIV positive Chairman of the Joint Chiefs perhaps?

MtD

vt5john · « **Reply #11 on:** February 02, 2011, 08:37:39 pm »

Quote from: dpb on January 31, 2011, 10:13:55 pm

The hard thing for me is dealing with this thought of being ambitionless. Do I still plan on retirement? Do I still maintain my long-term goals? I know this gets easier with time as do all things, but this is a valid concern of mine.

Hi There the answer to your questions are: YES and YES!!!!!!!!!!! Sorry to hear of your status - but it happened and like Matty and Ann said - it's no longer a death sentence. You CAN and WILL live a long, happy, fruitful and productive life with a few lifestyle modification of course. Please know that you're not alone - next month would have been 1 year since I was first diagnosed. I had a rough start, but I'm all okay now - healthy as a horse and happy as a clown :-). Good luck and keep us posted of your progress.

dpb · « **Reply #12 on:** February 04, 2011, 08:27:33 pm »

Thank you for the words of encouragement, vt5john. I should be back in the States before the 15th of this month. I'll keep you updated.

notoutinilm · « **Reply #13 on:** February 07, 2011, 08:31:54 am »

Quote from: Ann on January 31, 2011, 08:34:25 pm

Hi Daniel, welcome to the forums.

Too bad you had to end up here, but why didn't you use a condom? Your sexual health is YOUR responsibility and your responsibility alone. You cannot go by what someone thinks - or tells you- is their current hiv status, as you learned to your detriment.

You learned the hard way that you should have wrapped it up. Nevertheless, you'll be ok.

Ann

This is the first post I have seen on this site by an Admin person that makes me not want to support or return to the site! Scolding someone about their behavior after the fact is not the way to go! Yeah, he should have worn a condom.... maybe he should go to church and repent and all will be fine!

Hellraiser · « **Reply #14 on:** February 07, 2011, 06:49:31 pm »

Quote from: notoutinilm on February 07, 2011, 08:31:54 am

This is the first post I have seen on this site by an Admin person that makes me not want to support or return to the site! Scolding someone about their behavior after the fact is not the way to go! Yeah, he should have worn a condom.... maybe he should go to church and repent and all will be fine!

It has nothing at all to do with being a morally reprehensible person, and everything to do with being a sexually responsible person. HIV is a disease, it is transmitted primarily through unprotected sex and sharing needles. If you participated in these activities you have put yourself at risk of contracting this virus and it is no one else's fault but your own. It's a hard pill to swallow but it's the truth. You had the tools to protect your own health and failed to use them, you cannot pin all the blame on someone else.

buginme2 · « **Reply #15 on:** February 07, 2011, 08:47:05 pm »

Ditto to notoutinlim

Nothing like posting that you just found out you have hiv and having an administrator of the site post "why didnt you use a condom?". On his first post no less. Why didnt any of us? Now thats what I call support. Way to state the obvious.

Hey man sorry your positive. It sucks. But you can handle it. It does get a little easier.

Ann · « **Reply #16 on:** February 08, 2011, 02:26:51 am »

Quote from: notoutinilm on February 07, 2011, 08:31:54 am

This is the first post I have seen on this site by an Admin person that makes me not want to support or return to the site! Scolding someone about their behavior after the fact is not the way to go! Yeah, he should have worn a condom.... maybe he should go to church and repent and all will be fine!

Quote from: buginme2 on February 07, 2011, 08:47:05 pm

Ditto to notoutinlim

Nothing like posting that you just found out you have hiv and having an administrator of the site post "why didnt you use a condom?". On his first post no less. Why didnt any of us? Now thats what I call support. Way to state the obvious.

Hey man sorry your positive. It sucks. But you can handle it. It does get a little easier.

I responded the way I did because in his first post, he seemed to be assigning all the blame on the woman he was in a relationship with. The blame game is never a healthy way to go and I wanted to get that straight with him from the outset. Sorry if I offended your tender sensibilities.

I am responsible for my own infection because I didn't insist on condoms. My fault, nobody else's. Same goes for pretty much everyone here. Own your hiv, don't let it own you.

dpb · « **Reply #17 on:** February 08, 2011, 02:58:32 am »

At no point did I "assign all the blame" on my partner or deny responsibility. That was an assumption you made. I stated facts (i.e. she didn't inform me of her status, and lied about her test results) which were apparently taken as an implication of placing fault.

Ann · « **Reply #18 on:** February 08, 2011, 03:09:30 am »

Quote from: dpb on February 08, 2011, 02:58:32 am

At no point did I "assign all the blame" on my partner or deny responsibility. That was an assumption you made. I stated facts (i.e. she didn't inform me of her status, and lied about her test results) which were apparently taken as an implication of placing fault.

Fair comment and I apologise. I've been around these forums for nearly ten years now and I've lost count of all the people who DID assign all the blame for their infection on the other person and your first post did read to me like you were yet another. You've clarified yourself since and I'm glad you did. As I said above, playing the blame game is NOT healthy.

BTW, I was also told by my partner that he was negative. He didn't lie, he just didn't accurately know his status. Can you be sure the same wasn't true in your case? I take full responsibility for my infection.

Anyway, how are you doing? Home yet?

dpb · « **Reply #19 on:** February 08, 2011, 03:24:12 am »

No offense taken. I can say with the utmost conviction that she was fully aware of her condition.

I'm doing alright though, thanks Ann. I'm flying home on the 14th after two long years away. I'm just ready to start treatment and move on with life.

Matt39 · « **Reply #20 on:** February 20, 2011, 05:08:04 am »

Quote from: Ann on January 31, 2011, 08:34:25 pm

Hi Daniel, welcome to the forums.

Too bad you had to end up here, but why didn't you use a condom? Your sexual health is YOUR responsibility and your responsibility alone. You cannot go by what someone thinks - or tells you- is their current hiv status, as you learned to your detriment.

You learned the hard way that you should have wrapped it up. Nevertheless, you'll be ok.

Ann

Frankly, those comments and that attitude are about as much use as a bent hammer.
Real life is not as some people would like, and it is irrelevant to this guy's situation.

Matty the Damned · « **Reply #21 on:** February 20, 2011, 05:10:28 am »

Quote from: Matt39 on February 20, 2011, 05:08:04 am

Frankly, those comments and that attitude are about as much use as a bent hammer.
Real life is not as some people would like, and it is irrelevant to this guy's situation.

Hi Matt,

Welcome to the Forums. Would you like to start your own thread and tell us a bit about yourself?

MtD

Matt39 · « **Reply #22 on:** February 20, 2011, 05:10:58 am »

Quote from: dpb on February 08, 2011, 03:24:12 am

No offense taken. I can say with the utmost conviction that she was fully aware of her condition.

I'm doing alright though, thanks Ann. I'm flying home on the 14th after two long years away. I'm just ready to start treatment and move on with life.

Good luck with that Daniel.

You need plenty of time to fully take in your diagnosis and, unless your numbers are seriously bad, you will need time to fully get your head around treatment in order to maintain adherence. Starting too quick is more likely to fail. So give yourself plenty of time.

dpb · « **Reply #23 on:** February 20, 2011, 05:54:44 pm »

Quote from: Matt39 on February 20, 2011, 05:10:58 am

You need plenty of time to fully take in your diagnosis and, unless your numbers are seriously bad, you will need time to fully get your head around treatment in order to maintain adherence. Starting too quick is more likely to fail. So give yourself plenty of time.

I'm back in the states, but unfortunately, I'm still waiting to be evaluated. I have to finish "inprocessing" here at my new duty station first. As soon as I'm finished with the medical evaluation, I'd like to take 30 days of leave for that very reason. That, and to get my affairs in order (transportation, communication, etc.) I don't think adherence to treatment will be an issue for me. I'm ready to start. I want to minimize the damage as much as possible and keep viral replication in check as soon as possible.

Matt39 · « **Reply #24 on:** February 20, 2011, 06:18:25 pm »

Considering your age, a decision about when to go on medication should involve quite a range of factors - your CD4 numbers and percentage, then current and recent health generally, all the blood tests around how your organs are functioning and cholesterol and blood sugar etc.

It really isn't a simple question about viral replication since, if all the other markers were very healthy, viral load alone is pretty irrelevant.
It stopped being seen as an important predictor of future health a very long time ago.

Even 30% of the members of the US NIH Panel didn't vote in favour of starting HAART before CD dropped below 500, and in Europe guidelines remain firm that the right level - for someone at your age, without serious risks of cardiovascular disease and without coinfection with Hep B or C - is to consider starting when CD4 drops to 350 or a percentage below 14%.

The reason for that is simple - the risks of black box drug chemotherapy at too early a stage can vastly outweigh the viral suppression benefits.

That is why a 30 country double-blind placebo controlled set of coordinated clinical trials (called 'START') began in 2010, to establish real clinical scientific proof of the benefits/danger ratio to starting HAART earlier, rather than relying on anecdotal clinic observations, or statistically unsatisfactory cohort data with too many confounding factors.

Best wishes

dpb · « **Reply #25 on:** February 20, 2011, 06:55:36 pm »

I appreciate the feedback. I knew that their were many factors to consider when starting treatment. I'll leave that up to my doctor, obviously. I just hate the thought of not having control and allowing this disease to progress unchecked.

Hellraiser · « **Reply #26 on:** February 21, 2011, 02:29:43 am »

Quote from: dpb on February 20, 2011, 06:55:36 pm

I appreciate the feedback. I knew that their were many factors to consider when starting treatment. I'll leave that up to my doctor, obviously. I just hate the thought of not having control and allowing this disease to progress unchecked.

That's quite a reasonable statement. Typically people side with a "Wait and See" or a "Hit it hard and early" philosophy. I would discuss the pros and cons of both positions with your physician, feel out his opinion and then do some research on your own before deciding exactly what you want to do. This is your decision, and he is just your very knowledgeable guide.

edfu · « **Reply #27 on:** February 21, 2011, 08:41:46 am »

Quote from: Matt39 on February 20, 2011, 06:18:25 pm

It really isn't a simple question about viral replication since, if all the other markers were very healthy, viral load alone is pretty irrelevant.
It stopped being seen as an important predictor of future health a very long time ago.

Says who???

What about all the evidence that suppression of viral load is more important than CD4 counts? And how do you reconcile your stating that "viral load alone is pretty irrelevant" when practically every other day a new study comes out detailing the extensive damage from chronic immune activation and accelerated immunosenescence? See my favorite link of the day, for example:

http://www.aidsmap.com/page/1624151/

mikeyb39 · « **Reply #28 on:** February 21, 2011, 09:12:09 am »

hi all,
This is 'my opinion' only, but I will give it anyways. My first numbers were kinda low so when to start was sort of a no brainer for me. I totally trust my physician like a family member, he has been dealing with the epidemic since day one.

His belief is to keep you're Viral load at a minimum or undetectable as early as possible. active viral load in you're system can cause damage to you immune system in the long term, per his belief. If you have great numbers then of course it is your decision to when to start, but dont let you immune system get down to low levels before you start medication.

mike

Matt39 · « **Reply #29 on:** February 21, 2011, 01:02:10 pm »

Quote from: edfu on February 21, 2011, 08:41:46 am

Says who???

What about all the evidence that suppression of viral load is more important than CD4 counts? And how do you reconcile your stating that "viral load alone is pretty irrelevant" when practically every other day a new study comes out detailing the extensive damage from chronic immune activation and accelerated immunosenescence? See my favorite link of the day, for example:

http://www.aidsmap.com/page/1624151/

I have known Keith Alcorn (the author of that article) personally for over 20 years. I can assure you he does not believe VL is either a sole or primary good predictor of future health, or sole or primary marker for starting HAART, and would calmly discuss with you why not.
I am also good friends with two senior Consultants in HIV medicine in two of the largest HIV clinics in London (one of which is the largest in Europe), and I can also assure you that they neither believe VL is what you think it is either.

I would re-iterate what Hellraiser posted - excellent advice to the OP to discuss calmly and fully the possible strategies, research widely themselves, then come to their considered personal decision.

edfu · « **Reply #30 on:** February 22, 2011, 12:58:14 am »

Quote from: Matt39 on February 21, 2011, 01:02:10 pm

I have known Keith Alcorn (the author of that article) personally for over 20 years. I can assure you he does not believe VL is either a sole or primary good predictor of future health, or sole or primary marker for starting HAART, and would calmly discuss with you why not.

You do not seem to understand the difference between a reporter who is reporting study results and a researcher who is conducting the study. Keith Alcorn is the aidsmap blogger who is reporting the results of a study conducted by Tammy Rickabaugh, of UCLA. Alcorn's beliefs are irrelevant, if he is objectively reporting Rickabaugh's results, as is the number of years you have personally known him. The only pertinent comments relating to VL in the context of this study's results would have to come from Dr. Rickabaugh.

Matt39 · « **Reply #31 on:** February 22, 2011, 06:50:55 am »

Quote from: edfu on February 22, 2011, 12:58:14 am

You do not seem to understand the difference between a reporter who is reporting study results and a researcher who is conducting the study. Keith Alcorn is the aidsmap blogger who is reporting the results of a study conducted by Tammy Rickabaugh, of UCLA. Alcorn's beliefs are irrelevant, if he is objectively reporting Rickabaugh's results, as is the number of years you have personally known him. The only pertinent comments relating to VL in the context of this study's results would have to come from Dr. Rickabaugh.

The difficulty with your argument, as posited in your post above beginning 'Says who??'
is that it talked about the overriding importance of of the Viral Load in deciding on treatment start, and that is nothing to do with the paper you linked to, and is most definitely not the standard view in treatment guidelines either here in Europe or in the USA.
Secondly, the paper you link to has 'may' as a prefix to every single one of the suggestions, ie it requires much more specific controlled research. So actually, it is observational and means nothing.
Let me give you a simple but crucial example - bone mineral density loss. It is already known and been published in research that Protease Inhibitors and Tenofovir are both seriously implicated in the demineralisation of bones, but that all ARVs without exception are implicated.
See the blog and comments here:
http://blogs.poz.com/sean/archives/2010/07/did_gilead_break_my.html
and here:
http://blogs.poz.com/sean/archives/2010/07/boning_up_on_bone_de.html
And at the 2010 World Aids Conference in Vienna:
Patrick W.G. Mallon, MB, PhD, from Master Misericordiae University Hospital, in Dublin, cited evidence showing that osteopenia, osteoporosis, and fracture risk are significantly higher in people with HIV compared with the general population. In one study of 671 people with HIV in Spain, 98% of whom were on anti-retroviral treatment, 47.5% had osteopenia and 23% had frank osteoporosis.

Now as Professor Mullen pointed out, without carrying out a DXA scan at the *start* of HAART, let alone before, for example at first diagnosis, it is literally *impossible* to know whether BMD loss occurs as a result of HIV at all. That would require a DXA scan to be done immediately at diagnosis to:
a) Discover whether someone's BMD was normal or not
b) Measure whether or not there was in fact any BMD loss between diagnosis and treatment start
c) Use as a base point for monitoring post HAART start

You see, the same applies for any 'possible' associated issue. The research and monitoring needs to take place, and in many areas it is simply not being done.

Thursday last week, I had an hour long discussion with my own HIV Consultant - a specialist in ARV toxicities - and he freely agreed that standard protocols both in the USA and here in Europe are failing 'HIV' patients because of examples such as BMD loss, because the monitoring *during HAART* is simply not happening, let alone at the outset when it is most valuable.
He told me that many of his colleagues are pushing at the door on this, and that they are helped by patients who also keep up the pressure but that sadly most patients are simply in the dark, and that drug manufacturers are painfully, and wrongly, very slow to respond to the evidence.
Of course that's why Sean Strub is blogging about it loudly on poz.com.

dpb · « **Reply #32 on:** March 01, 2011, 11:02:01 pm »

Today, after 6 weeks of waiting, I was finally able to see a doctor/HIV specialist. They did a lot of bloodwork, of which I'll know the results in about two weeks. Not much more I can do at this point but wait and hope for the best.

MiniPozToyota · « **Reply #33 on:** April 08, 2011, 11:55:03 pm »

Hey man, I was recently told I am HIV positive as well, and just like you I'm in the military as well, if you would like to pm me anytime feel free to, Maybe we can relate to each other a little more on here since we are both in a military working place. You can go your whole career and retire, just wont be able to deploy anymore, but still can get rank and army schools. Where did they have you stationed at and are they sending you to Walter Reed?

dpb · « **Reply #34 on:** April 09, 2011, 05:25:43 pm »

Thanks Toyota. I think we can definitely relate to each other better than most others, as our profession is quite different. My current enlistment ends in November 2012. I've only been contemplating re-enlisting since after my diagnosis. I feel like I may have to.

Just to provide an update for anyone who cares:

I've had two appointments with my Infectious Disease doctor. I tested negative for Tuberculosis, Toxoplasmosis, Syphillis, Hepatitis C, and a few other diseases. I was already vaccinated against Hepatitis A and B. My first blood results were a 525 CD4 count and 170,000 viral load. However, my genotype results were unavailable, and my doctor told me to re-schedule an appointment for June. He told me that I would start medication at that time. He told me that my life expectancy is normal and compared it to diabetes in that if you leave it untreated, it will eventually kill you. But with treatment, it becomes a very manageable disease. He said I'm otherwise healthy. I was hoping to start right away, but I realize I just have to let time run its course.

Mentally, I'm doing OK. It's been an adjustment. Not only to this disease, but also to living back in the United States. I wasn't prepared for the move and it's taken me some time to get my personal affairs in order. I don't consciously think about it too often though. Just trying to live a normal life now.

Matt39 · « **Reply #35 on:** April 17, 2011, 08:46:29 pm »

Quote from: dpb on April 09, 2011, 05:25:43 pm

Just to provide an update for anyone who cares:

My first blood results were a 525 CD4 count and 170,000 viral load. He [your HIV Doc] told me that I would start medication at that time.

With those CD4 results (assuming the 'percentage' is also over 15%) you are not actually even that close to ARV treatment under either US or European guidelines. There is no proven clinical benefit as against the danger of toxicities, going on ARVs above 350 (European guidelines) or above 500 (US guidelines) so I really don't know why your Doc is saying 'you would start medication'.
In any case, it is *your* decision and not your Doc's - his is only a recommendation, and so long as your CD4 stays above 500/15% it is not even recommended in the USA.

mecch · « **Reply #36 on:** April 17, 2011, 09:34:25 pm »

Quote from: Matt39 on February 20, 2011, 06:18:25 pm

- the risks of black box drug chemotherapy at too early a stage can vastly outweigh the viral suppression benefits.

WTF is "black box drug chemotherapy"? "BLACK BOX"?

I dunno seems to me you have some agenda in these posts.

Seeing as this forum is read by all sorts of people around the world. I'll just report the situation in this European country. Lots of ID docs in Switzerland are treating soon after diagnosis, if the patient is interested, no matter the numbers.

Its hardly a radical medical view these days.

To the OP: just find a doctor you trust, and make up your mind with the input of your ID.

buginme2 · « **Reply #37 on:** April 17, 2011, 10:23:26 pm »

I agree. Find a doctor you trust. Matt39 seems to have some anti treatment agenda. Don't buy it.

mecch · « **Reply #38 on:** April 17, 2011, 10:52:14 pm »

Ok i took my lazy ass to google and found out what you meant by "black box" - so that's the long list of possible dangers on a drug package.

HAART is serious business - no denying that. Its just that there are plenty of docs that weigh the costs, dangers, and benefits and it seems in the last few years there's certainly a community of doctors who value the benefits enough to recommend treatment when national protocals do not.

HIV is also a very individual battle, not just research statistics which are always only more information to be applied to an individual case.

dpb · « **Reply #39 on:** April 19, 2011, 08:51:49 pm »

I've been ready to start treatment since I was diagnosed. I'm heeding my doctor's guide which was to wait until June. However, I don't know if I can wait any longer. I am experiencing extreme fatigue which has become progressively worse over the past several weeks. It just feels like a slow death.

mecch · « **Reply #40 on:** April 20, 2011, 04:24:49 am »

So why wait til june, can see your doctor again now???

dpb · « **Reply #41 on:** April 20, 2011, 11:38:19 pm »

I can certainly call and find out.

Matt39 · « **Reply #42 on:** April 22, 2011, 07:16:45 am »

Quote from: mecch on April 17, 2011, 09:34:25 pm

WTF is "black box drug chemotherapy"? "BLACK BOX"?

I dunno seems to me you have some agenda in these posts.

Seeing as this forum is read by all sorts of people around the world. I'll just report the situation in this European country. Lots of ID docs in Switzerland are treating soon after diagnosis, if the patient is interested, no matter the numbers.

Its hardly a radical medical view these days.

To the OP: just find a doctor you trust, and make up your mind with the input of your ID.

Black Box warnings are those placed on medicines by the USA's FDA and the European Medicines Agency that are known to be highly toxic. Every single ARV for HIV is a Black Box Drug.

It is actually highly 'radical', as in HAART(ARV) is *not* supported by either the USA or any European specialist HIV Medical guidelines for a 'HIV+' person with a CD4 count/percentage above 500/15% who does *not* have coinfection with Hep B or C. And that is precisely because:
1. No clinical trials have shown *any* benefit to such early treatment
and
2. The danger of toxocities going on ARVs too early is proven.

Matt39 · « **Reply #43 on:** April 22, 2011, 07:22:46 am »

Quote from: buginme2 on April 17, 2011, 10:23:26 pm

I agree. Find a doctor you trust. Matt39 seems to have some anti treatment agenda. Don't buy it.

I have an ethical treatment agenda.
That which is supported by the Specialist Advisory Panel of the National Institutes of Health in the USA and every single European HIV treatment guideline panel.

Yes, dpb should find a specialist and experienced HIV doc that he trusts, and one that follows his own profession's HIV guidelines, and then dpb should make his *Own* decision based on full awareness of all facts.
And not some trite inaccurate comments here from some people who patently display a degree of ignorance around treatment guidelines, and lack of awareness about the veryt drugs themselves, that is frankly shocking.

Matt39 · « **Reply #44 on:** April 22, 2011, 07:27:59 am »

Quote from: dpb on April 19, 2011, 08:51:49 pm

I've been ready to start treatment since I was diagnosed. I'm heeding my doctor's guide which was to wait until June. However, I don't know if I can wait any longer. I am experiencing extreme fatigue which has become progressively worse over the past several weeks. It just feels like a slow death.

You would be better with a proper full physical examination and diagnosis.
With your CD4 levels, unless you have other blood markers that are coming up as well out of range, it is much more likely that your fatigue has nothing whatsoever to do with your physical HIV status but rather a very common response to nthe diagnosis itself.
However, psychologically it may well be that you will not feel at ease until you start medication and, so long as you balance the benefits of any placebo effect against the dangers of early start, it is your choice to start early if your insurance and Doc will agree to it.
But don't assume that your current state of mind or tiredness is automatically a result of any viral load - it is extremely unlikely that is the case.

mecch · « **Reply #45 on:** April 22, 2011, 07:51:40 am »

Assurbanipal · « **Reply #46 on:** April 22, 2011, 12:27:06 pm »

Quote from: Matt39 on April 22, 2011, 07:16:45 am

...
It is actually highly 'radical', as in HAART(ARV) is *not* supported by either the USA or any European specialist HIV Medical guidelines for a 'HIV+' person with a CD4 count/percentage above 500/15% who does *not* have coinfection with Hep B or C. ...

Quote from: Matt39 on April 22, 2011, 07:22:46 am

...And not some trite inaccurate comments here from some people who patently display a degree of ignorance around treatment guidelines, ....

These statements do not fairly represent the current US clinical treatment guidelines. As of January 2011 those guidelines state:

" For patients with CD4 counts >500 cells/mm3, Panel members are evenly divided: 50% favor starting ART at this stage of HIV disease (B); 50% view initiating therapy at this stage as optional (C) (B/C-III)."

http://www.aidsinfo.nih.gov/guidelines/GuidelineHTML.aspx?GuidelineID=7&docID=1&NodeID=10

"Everyone is entitled to his own opinion, but not his own facts"

Matt39 · « **Reply #47 on:** April 24, 2011, 12:24:51 pm »

Quote from: Assurbanipal on April 22, 2011, 12:27:06 pm

These statements do not fairly represent the current US clinical treatment guidelines. As of January 2011 those guidelines state:

" For patients with CD4 counts >500 cells/mm3, Panel members are evenly divided: 50% favor starting ART at this stage of HIV disease (B); 50% view initiating therapy at this stage as optional (C) (B/C-III)."

http://www.aidsinfo.nih.gov/guidelines/GuidelineHTML.aspx?GuidelineID=7&docID=1&NodeID=10

"Everyone is entitled to his own opinion, but not his own facts"

Sorry but you are not quoting 'Treatment Guidelines'.
Treatment Guidelines for >500 CD4 do *not* recommend starting ARV treatment.
Any person can *choose* to start treatment earlier but that is *not* a treatment guideline.
Why? Because scientific clinical evidence does *NOT* indicate a benefit balance over and above a *danger* balance.
How difficult is that to understand?
And precisely *why* are the double-blind, randomised, placebo-controlled 'START' trials curren tly taking place? To determine *scientifically* if there is a benefit, that outweighs *risk* in starting HAART earlier than 350 CD4.
It is always best to get the medical facts straight first.
Please *RE-READ* what you linked to and you will find what you suggest about HAART at over 500cd4 is *not* a recommendation to treat.

newt · « **Reply #48 on:** April 24, 2011, 03:50:10 pm »

I agree with Assurbanipal on the guidelines, the quote is from the guidelines, US docs were indeed split 50/50 on starting at CD4 counts over 500, and it seems to me that starting at higher CD4 counts is not at all radical for many US docs. This is what they do often. This says more for me about US docs than the research.

I also agree with Matt39 about no conclusive evidence for treatment at CD4 counts of 500+, and hence the importance of START. This is a really key piece of research. At present we can conclude that there is a benefit to starting at CD4 350+ compared to 200 or lower. But not at 500+.

I also agree with my own view which is I would start treatment immediately after diagnosis provided I wasn't in the throes of a primary HIV infection and had got my head round becoming HIV-positive. This is based on all the stuff I have read about what uncontrolled HIV does to your body, your gut, your genes, inflammation markers etc, not rigorous studies on the benefit of early vs deferred treatment. I stress, this is my view, right now, today, and it wasn't my view when I started meds (at then guidelines compliant CD4 count of around 200), it wasn't my view 3 months ago. I have changed my mind on this point. I can see where the treat early docs on the US guidelines panel were coming from. And also the other side of the coin. But I am flipping my £1 coin for treat early right now.

The trouble is, my view on treatment has taken years to evolve and is not hugely emotionally driven anymore. Plus I am taking a position on the generality (ie other people), not treatment for me. Emotionally I experience HIV meds as comparatively benign compared to uncontrolled HIV infection and its consequences. But not everyone will.

Bottom line: consider treatment when your CD4 count is around 350-500, this is what research tells us is optimum at present. If you want to start earlier or later, do so if you want to and can, it's your treatment, your HIV, your life.

- matt

dpb · « **Reply #49 on:** May 17, 2011, 01:25:29 am »

Thankfully, the decision has already been made. I just took my first dose of Atripla. I was diagnosed mid-January, but the absolute soonest I could've started treatment was mid-March. I waited two months. That's two months longer than I really wanted, but I followed my doctor's recommendations. When I last saw him this week and he revealed that my genotype indicated no drug resistances, I decided it was time.

I couldn't be happier to finally begin this next step. I'm taking control of the virus and my health. Hopefully, I won't experience any serious side effects and my body responds well to the medication. I'm optimistic though. Thank you all for the support, and I'll keep you posted through this journey.

spacebarsux · « **Reply #50 on:** May 17, 2011, 04:26:11 am »

Good Luck DPB:)

dpb · « **Reply #51 on:** May 17, 2011, 08:15:32 am »

I didn't notice anything unusual last night, but as I awoke this morning I felt almost intoxicated. Sort of dizzy and lightheaded. Balance feels a little uneasy. I probably shouldn't drive to work this morning.

rocky48 · « **Reply #52 on:** May 17, 2011, 09:12:10 am »

dpb

Sorry, to hear you have joined our ranks for hiv but things happen and we move on.

My ID doc started my med after my CD4 dropped 3 time below 500. So, I started Atripla on April 23 and the only thing I have is some lightheadness in the morning. Which is starting to go away. I take my Atripla at 11 pm 3 hours after eating my last meal.

I guess I am lucky no real side effectives as some members here have had.

Good lucky with the Atripla

dpb · « **Reply #53 on:** May 17, 2011, 02:46:58 pm »

So far so good. I still feel a little lightheaded, but perhaps it'll take a few days for that to go away.

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