Hiv without meds

[wood]

Bbsaft,

I hope this finds you with us still. I am not as knowledgeable as a lot of the men on here. I am simply living with HIV and can only relate to you and others my story. The choice to go on meds is yours. Just as the choice to bareback or have unsafe sex was.  Please consider though that you are infecting others and contributing to the medical problems you do not want to be part of. I was diagnosed in May of 2014. ........

For those who read this that are debating treatment, don't. Get the meds!!

Great story man, and I hope you continue to improve.  This is a great example of why testing and treatment are so important.  

 

Out of curiosity, how did you cancer treatment go? 

[ZonovX]

Wood,

Thanks for your support!!  As of about a month ago, I am CANCER FREE!!  However, back in december they found an issue with my bone marrow and it not producing the cells, mainly neutrophils, that I need to fight infection on my own.  I have been having near weekly injections to boost these numbers. Neither my cancer or ID physicians know what is causing this and say it is 'probably' due to the chemo. Regardless, it doesnt seem to be getting any better, so I keep getting the shot and keep on keeping on. :-)

[bttmsubslut]

As rawTOP says, you're on the brink of finding out for yourself how HIV progresses. If my CD4 gets down to 350 I start getting candidiasis in my mouth and throat. When I got down to the low 200s, I neglected to wear gloves etc when feeding a sickly orphaned lamb and ended up with cryptosporidiosis (when the water authorities tell you to boil all drinking water it's almost always because cryptosporidium has got into the water supply), which entailed shitting myself four or five times a night for five weeks.

The longer you leave treatment the worse it gets: my partner was completely unaware of having HIV until he had a needlestick injury at work. We worked out later that he must have got it some years previously when he was the first on the scene when an injecting drug user hit an artery instead of a vein and in the course of getting a tourniquet on the guy to stop the massive blood loss he took a faceful of blood. When he tested after the needlestick injury he had only 80 CD4 cells, and as it turned out MAI, a relative of TB. It took him four miserable years to die, losing half his body weight in the process.

See your doctor. Take the pills.

I was diagnosed two months after seroconversion, and blood work was done a month later. My blood work showed a CD4 count of 312 and a viral load count of 750K. I went on meds immediately. My doctor said he would put anyone on meds with a CD4 count below 500. I asked if my blood work indicated anything unusually bad, like a rapid progression. The doctor said that everyone is different and that it doesn't indicate anything better or worse than anyone else. He said it's impossible to know what my baseline CD4 count was before I was infected. He said he would be especially concerned if my CD4 count was below 100. The hiv pharmacist said she'd seen viral loads in the millions, and reassured me that everyone is different. I have always wondered if they were just concealing bad news from me at the time. Thoughts? 

[wood]

Wood,

Thanks for your support!!  As of about a month ago, I am CANCER FREE!!  However, back in december they found an issue with my bone marrow and it not producing the cells, mainly neutrophils, that I need to fight infection on my own.  I have been having near weekly injections to boost these numbers. Neither my cancer or ID physicians know what is causing this and say it is 'probably' due to the chemo. Regardless, it doesnt seem to be getting any better, so I keep getting the shot and keep on keeping on. :-)

 

 

Good to hear! as for the treatment, keep up with it for now.  I know more than a few people who have fought cancer before and chemo wrecks your body.  I can only imagine what its like while going through immune system reconstruction at the same time.  It may take years for you to feel normal again after chemo, but stick with it.  Things will improve, and glad to hear the treatment went well!

[ZonovX]

Good to hear! as for the treatment, keep up with it for now.  I know more than a few people who have fought cancer before and chemo wrecks your body.  I can only imagine what its like while going through immune system reconstruction at the same time.  It may take years for you to feel normal again after chemo, but stick with it.  Things will improve, and glad to hear the treatment went well!

Luckily(?) I couldn't tell the difference between the cancer treatment and the HIV treatment or if I was sick at any one time which was causing it. As for now, my white's are still low, but seems to be getting better. Very slowly, but better none the less.

[wood]

Luckily(?) I couldn't tell the difference between the cancer treatment and the HIV treatment or if I was sick at any one time which was causing it. As for now, my white's are still low, but seems to be getting better. Very slowly, but better none the less.

Well the somewhat ironic thing is that Chemo is so toxic that it probably suppressed much of the stuff that goes on with immune reconstruction syndrome.

 

Glad to hear that you are taking your health seriously though.  Full recovery will be slow, but hopefully you can bounce back fully with the right care.  

[bearbandit]

I was diagnosed two months after seroconversion, and blood work was done a month later. My blood work showed a CD4 count of 312 and a viral load count of 750K. I went on meds immediately. My doctor said he would put anyone on meds with a CD4 count below 500. I asked if my blood work indicated anything unusually bad, like a rapid progression. The doctor said that everyone is different and that it doesn't indicate anything better or worse than anyone else. He said it's impossible to know what my baseline CD4 count was before I was infected. He said he would be especially concerned if my CD4 count was below 100. The hiv pharmacist said she'd seen viral loads in the millions, and reassured me that everyone is different. I have always wondered if they were just concealing bad news from me at the time. Thoughts? 

Hi mate,

Sorry not to have gotten back to you quicker - life happens and I only found your message while having a look through older post, watching how this board and guys' attitudes have changed since PrEP became available.

 

With the number you quote, were it possible, I'd have gone with you to your next appointment if you weren't put onto meds! The Uk is still sticking to <350 CD4 for meds while I think we should be adopting the American number of <500. That said, there is considerable latitude in approach: people are going on meds with much higher CD4 counts because they're in a magnetic relationship (one poz one neg), so that their viral load is reduces to undetectable and therefore (almost certainly) non-infectious. In the UK there is now interest in the science of HIV gerontology, womething we never thought we'd need. The thing that isn't being done is any real organised investigation of what makes the difference: I had an ex-boyfriend and a husband both die in 1992, who, in turn had been boyfriends. The triangle of HIV transmission between the three of us was complete, yet I survived. No-one's asking why...

 

It's shame that a CD4 count is automatically done on everyone whether they have HIV or not, but the cost would be too high and the results equivocal because of the way that CD4 counts can vary. So all doctors have to go on is the first post diagnosis count. After diagnosis what becomes more important is the viral load: in a PwHIV the viral load is actually a better indicator of progression than CD4 count. By now your VL should be down to undetectable levels, giving your CD4 count a chance to begin to rise again. Below CD4 200 there's a strong risk of pneumocystis pneumonia, strong enough that it's not unusual for people to be given a broad spectrum antibiotic (septrin/bactrim) to prevent it, and below 100, CMV, MAI, TB, most of the "aids-defining illnesses" are liable to hit at that point.

 

Medical professionals don't lie to the patient. In extreme cases they may tell a partner or family member ahead of the patient, but it's always the truth. John, diagnosed late in 2003 and died in 2007, was an incredible hypochondriac: we always had our appointments together and our doctor would examine him, send him out for a cigarette and discuss her conclusions with me, my job being to drip-feed him the information as appropriate. My feeling is that you've been given the truth: the numbers you quote are pretty much average for someone just diagnosed. Once on meds, the tendency is to include a med that acts quickly on the virus, along with a couple of drugs which are slower and steadier in their action, so the usual aim is to achieve undetectability within three months (and we're sometimes seeing it within three weeks here!) with a small rise in CD4. It takes the CD4 cells time to recover and their rise is nowhere near so dramatic as the viral load's fall.Also worth bearing in mind is that the CD4 count likes to wander throughout the day: if you can have your appointment for bloods at the same time of day, with the same sort of breakfast/lunch, basically re-create the previous day you had bloods drawn.

Don't worry about the CD4<200 marker as a definition for aids: it's not health related, even though it shows an increased vulnerabilty to pneumonia and other less stressful opportunistic infections. It was originally added into the definition in the USA in order to allow people who were ill but who hadn't shown one of the defining infections access to benefits only available to people with aids. In other words a political rather than a medical definition. It remains as part of the growth of understanding of the entire spectrum of HIV disease.

 

I'm always willing to answer questions about HIV (and if I don't know the answer pass people on to someone who will), but sometimes miss them as I did in this instance - maybe a personal message to say there's a question in forum X you'd like answering or ask in a PM?

Anyway, please let us know how things are going... and sorrry again for the delay in getting back to you...

[Guest plowmeraw]

Hot off the presses. Very strong evidence from a randomized controlled trial that treatment that shows strong benefits of beginning treatment as soon as possible. I'm on Tivicay and Truvada and am tolerating them well. 

 

http://www.nytimes.com/2015/05/28/health/hiv-treatment-should-start-with-diagnosis-us-health-officials-say.html?emc=edit_th_20150528&nl=todaysheadlines&nlid=19551990&_r=0

Edited May 28, 2015 by plowmeraw

[bearbandit]

This refers to the START (another clever acronym - who thinks them up?) trial whose aim was to find out whether it was better to start treatment immediately or when the CD4 count had reached a certain level (500 in the USA, 350 in the UK, other countries vary). The decision to halt the trial because it's unethical to continue to deny people ARVs is excellent news. Basically when you're first infected HIV goes to work very quickly attacking various parts of your body besides the CD4 cells that it uses to reproduce. Most visible possibly is their attack on the lining of the gut leading to malabsorption (wasting) syndrome if left untreated.

It's a further encouragement to know your own status, testing on a regular basis, and if you test positive then it'll be before too much damage is done to your body. If you're equivocal about starting meds, it allows you some wriggle room while you get used to the idea. If you want to start meds immediately, it's a clear signal that the meds are good for you.

 

Don't be put off by the horror stories about past drugs (and I admit to having had bad experiences with a number of drugs, but then I did start treatment in 1989 when there was only AZT). Side effects these days are minimal. And we know that if you have HIV the drugs will save your life. Of course, you might be down for a heart attack or colonic cancer or a car crash, but that's another story...

[snaketat]

great and interesting thread.  as a newly pozzed guy....and really will not know my numbers until next week, i am trying to absorb as much info as possible.   i do not want to die of aids....never part of the plan...but i do want to experience as much of what this process feels like as possible....only with good information can i make the choices i will have to in the coming weeks and years.

[1slut]

Snaketat, you are starting a new journey many of us are going through. Some challenges ahead but almost all can be resolved and not all that scary. My hiv doctor always tell me I won't die of aids, but whatever I would have died from before hiv.

My advice:

1. Get a good doctor who spends time with you and whom you like. 

2. Know your numbers with regular tests. All sound a bit new but they are part of you.

3. Do not be afraid to start the new medications we now have. Be aware of long term side-effects and not be afraid of them. We live in a dangerous world after all. There are toxins every where. I started Atripla when my CD4 dropped to 350. The first 2 weeks I had the most amazing vivid dreams - all good and some were unexpectedly sexy! Won't mind having them again...

4. Continue to be responsible. There are other infections beside hiv e.g. Hep C.

5. Good time to review your lifestyle and stay healthy.

6. Get on with your life as before hiv became a part of it.

Good luck!

[hungry_hole]

great and interesting thread.  as a newly pozzed guy....and really will not know my numbers until next week, i am trying to absorb as much info as possible.   i do not want to die of aids....never part of the plan...but i do want to experience as much of what this process feels like as possible....only with good information can i make the choices i will have to in the coming weeks and years.

This post surprises me because snaketat's profile clearly says that he was a chaser and it took him 59 days to poz. I thought chasers, with the very specific aim of pozing, would during the chasing imagine going through the process of pozing in their minds. At least that's how I would do it I were wanting to poz and I would make it all a big fetish.

[wood]

great and interesting thread.  as a newly pozzed guy....and really will not know my numbers until next week, i am trying to absorb as much info as possible.   i do not want to die of aids....never part of the plan...but i do want to experience as much of what this process feels like as possible....only with good information can i make the choices i will have to in the coming weeks and years.

I dont mean this in a derogatory way, but AIDS is much like aging, only accelerated. So at 51, I wouldn't recommend accelerating the process anymore than you need too.  The average life expectancy in the US for a man is 78.  Based on that you have a little over 25 years left, and often the last 5-10 are not the best.  Because of that I HIGHLY recommend getting on and staying on the best treatment you can get asap.  

[snaketat]

This post surprises me because snaketat's profile clearly says that he was a chaser and it took him 59 days to poz. I thought chasers, with the very specific aim of pozing, would during the chasing imagine going through the process of pozing in their minds. At least that's how I would do it I were wanting to poz and I would make it all a big fetish.

no doubt...i did as you suggested....the process leading up to my decision to actively chase was years in the making.   i was strictly no codoms for years...but was serosorting.   once i felt that i really understood all this means, i was ready to act...and i did.

 

but, no matter much you plan and think.....once you have made the choice and you convert, the decisions be come real.....you get information from others that you did not have before.   the very real underlying reasons i elected to chase and convert remain.   setting all of the next steps on this path still takes thought and effort......no surprises....but there are things that need to be considered

[wood]

 

With the number you quote, were it possible, I'd have gone with you to your next appointment if you weren't put onto meds! The Uk is still sticking to <350 CD4 for meds while I think we should be adopting the American number of <500. That said, there is considerable latitude in approach: people are going on meds with much higher CD4 counts because they're in a magnetic relationship (one poz one neg), so that their viral load is reduces to undetectable and therefore (almost certainly) non-infectious. 

 

It's shame that a CD4 count is automatically done on everyone whether they have HIV or not, but the cost would be too high and the results equivocal because of the way that CD4 counts can vary. So all doctors have to go on is the first post diagnosis count. After diagnosis what becomes more important is the viral load: in a PwHIV the viral load is actually a better indicator of progression than CD4 count. By now your VL should be down to undetectable levels, giving your CD4 count a chance to begin to rise again. Below CD4 200 there's a strong risk of pneumocystis pneumonia, strong enough that it's not unusual for people to be given a broad spectrum antibiotic (septrin/bactrim) to prevent it, and below 100, CMV, MAI, TB, most of the "aids-defining illnesses" are liable to hit at that point.

 

 

cd4 counts on all people can be all over the map, just more so for people with HIV.  I know a guy who is very healthy was on treatment and undetectable within 6 months of infection, yet his CD4 count has never risen above 300, and is normally around 250.  he didnt know his cd4 count prior to infection, so it just may be that his is naturally lower than some other people.  from what I have read doctors are focusing less on cd4 counts today.  Yes, they are important, but for example the doctor treating my friend isnt worried at all about his low count because there is no reason to think his should be much higher.