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Buzz1
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Reged: 08/10/12
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Newly Positive & Waiting Before Going on Meds....?
#266046 - 09/03/12 02:39 AM
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I was diagnosed as HIV positive just under three weeks ago. I must have been exposed within the last three months or so since I was seroconverting in mid-July to mid-August with the usual rash, fevers, fatigue, etc. In mid July I was still testing negative (twice) so I'm a real newbie here.
My CD4 count was 648 as of two weeks ago but my viral load was high (500,000). However, this blood work was taken as I was in the process of seroconverting which I hear is normally accompanied by a higher than usual viral load count.
I am not wanting to start medication right away even though that seems to be the current protocol. I know of several people who were positive for several years before starting medication and they are all doing very well with high t-cell counts and undetectable viral loads. My doctor wants me to go on atripla asap.
Has anyone out there waited a few years before beginning medical treatment?
Are there any medically sound reasons as to why I should start meds right away if my numbers turn out to be ok over the next 6 months or so? Of course I am taking care of myself, eating well and trying to live as healthy a lifestyle as possible.
Thank you!
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your story is similar to mine. click on my name and read my previous posts to see the progress. i know the exact date of infection, sero-conversion period, and when i tested poz. i hope you are in a major center and they have put you in an observation study. you and i are rare so there are researchers that would loveto watch your system for the next 6 months.
i was like you - i waited for a period before going on meds. the common thought is less than 500 go on meds. however, now, its a public health issue to get as many of us as undetectable so it potentially lowers (not eliminates) the risk of future infection.
i never went over 500 in my cd4 count. personally, if i had your numbers, i probably would have waited to see where i woud have levelled out. i will be honest - taking meds is a little bit of a mind f**k - i mean, we have to be so thankful that we have them. many people don't have this luxury. but taking them everyday is this reminder everyday that life has changed. it was something i wasn't prepared for.
oh - and idon't know a single person who doesn't have some form of side effect on aptrila - try to ask around to see whether it would be managable for you. the sleeplessness is really tough.
don't freak out about all of this. you aren't alone - there are tonnes of people on here in the exact same boat going through the exact same things you are. you aren't alone.
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Buzz1
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Thank you-it is very interesting that we had such a similar experience. I hope you are doing well on medication now--I am waiting on my latest numbers which I will get in about a week and I'll see how they are then...
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iam1
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Congratulations on taking care of yourself. You'll find as you get into this world of HIV that the more you know the easier it can be to deal with things.
Should you start meds? Funny. That was one of the topics of tonight's support group. First let me say - everyone is different. The virus doesn't reproduce at the same rate in person A as it does in person B. "Current" recommendations of starting meds right away is actually a very new thing.
If you'll think for a minute of HIV in your body as termites in a house. When the termites have more time to eat the house it can be more difficult or impossible to fix. If you call the exterminator when termites are first spotted it only takes a little effort to be rid of them. Same with HIV and you. It's easier to keep HIV down and your body healthy if that's the way it is to start with.
But (and there's almost always a "but" with HIV), when you start meds chances are very good that you'll have to stay on meds forever. Until you die. And, the way things are looking that probably won't be until you hit 70 or later. It can be a big deal to some people to know they have to take meds every day for the rest of their lives.
If you don't feel you're ready don't start. I've never given direct advice like that, but I've seen it in people who aren't ready, do start, and end up going off meds. Not a good thing. (Talk with someone knowledgable about drug resistant HIV.) Your numbers aren't too terribly bad. Wait a couple months. Get a reading or two after the virus has quieted down and your body is working at keeping it in check. IF your viral load drops (as it does in many people after initial infection) and your CD4 stabilizes in a decent range you'll have a little time to mull your options.
Be sure to discuss with your doctor the side effects of the meds he'll be wanting to start you on. ALL HIV meds have side effects! But, if you're going to a reputable doctor for treatment you can trust his judgement on when and what to take. Don't wait too long. You don't want to try to rebuild that house after the termites have eaten down to the foundation.
I first tested positive in 1988. I was an idiot. I waited until I got sick in 1999 before starting treatment. My VL was in the millions and my CD4 was about 17. I still see the same doctor. He tells me how happy he is to see me, because I lived. I found out several years after I had been in the hospital that they hadn't expected me to survive. I do NOT recommend this course to anyone! Just had my regular chekcup last week. VL - undectable. CD4 - 784.
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I was diagnosed mid-June last year after exposure to HIV in April 2011 and seroconversion in May 2011. My CD4 count was virtually normal on my first labs and my viral load was 29,000. Within a month or so my VL was undetectable and my CD4 count is still over 1000.
My first reaction on testing positive was: OK, what action do we take right now? It was a Thursday evening, and on Friday morning I was in the office of an HIV specialist getting blood work done and discussing treatment. For me, it was important to get on medication as soon as possible. My logic told me why wait for the virus to get more active before starting medication? At the time, I didn't realize that lots of people don't want to go on meds and wait until their numbers get worse. That first day my doctor did all the necessary bloodwork, including genotype testing to see if I was resistant to any specific medication. While we waited a week or so for the results, she put me on a combo on Truvada and Kaletra, which were horrible to my system, probably just because my body was adjusting to the meds. However, once we got the results back she put me on Atripla, and, as I said, my viral load went undetectable quickly thereafter.
That's my experience: I didn't want to sit in shock and numbness at the diagnosis and not be proactive. I knew enough to know that being HIV+ today is radically different than it was 20 years ago. I've read that some people seem to have a problem with taking medication daily, but that's never been an issue with me as I've been taking meds daily for acid reflux for 20 years!
The gist of it all for me was: I'm going to have to go on meds at some point, so why wait until my numbers are worse and more damage may have been done by the virus to my body? It was important to me to take action immediately. I've since met many people who are not on meds at all, despite being diagnosed years ago, but I couldn't imagine living with the knowledge that there's a virus possibly wreaking havoc inside me without my taking any strong action against it.
Not sure if this is any help, but thought I'd add my experience. Frankly I take one pill for HIV daily (among other meds for unrelated issues), get my bloodwork done every three months and, at least for now, my HIV status is probably the last thing I'm concerned about!
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Buzz1
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Thanks for your responses so far guys, you've been very helpful.
I suppose there is no clear cut answer to this-I met someone who has been positive for 20 years and just started meds five years ago and is doing great...so are his chances of living a long life lower since he waited so long? Or was he wise to wait until the better class of drugs came out?
I am still confused by this but will just give it a few months and see.
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riverprincess
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Please let us know how your doing.
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