POZ Community Forums
Main Forums => Living With HIV => Topic started by: mark75203 on June 10, 2008, 01:14:31 am
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Me and my lover of 3 yrs just were diagnosed with HIV 10/2008, at times we get get really scared because we hear alot of stories when both partners are Positive and 1 dies rather quickly. We are both in college and trying to stay fit and healthy and live a normal life at the same time. My doctor has just ask me to participate in a study with a new drug that has not yet been approved by the FDA yet, the office visits along with the meds are free as long show up and they will pay me, they are going to run a series of test and labs, this will be my 1st time starting meds and i am really nervous because i know that once i start i cannot stop. Someone please give me some advice, should i do this study, does it sound like it is safe? And i wanted to purchase juven for me and my lover but it is not a per scription drug and my insurance won't pay for it, does anyone know of a similar drug that is per scription?
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Mark, welcome to the forums. I can't give you any concrete advice on the drug trial. I would do a little research on my own about the medication in question before I did a trial, however. I also can't answer your question about what supplementation your insurance company would pay for, but I'm wondering why you feel you need to have this for you/your lover? Are you two having problems with poor health?
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No one should diagnose or even offer you advice based on the sketchy information you've provided.
The story you're hearing that one partner will die quickly is nonsense. Have you discussed your concerns with your doctor? You're all over the place jumping around from rumors, to drug trials to Juven. What are your numbers and why does your doctor want you to start meds now?
You tested positive 10/2008?
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....this will be my 1st time starting meds and i am really nervous because i know that once i start i cannot stop. Someone please give me some advice, should i do this study, does it sound like it is safe? And i wanted to purchase juven for me and my lover but it is not a per scription drug and my insurance won't pay for it, does anyone know of a similar drug that is per scription?
Mark,
Chill out. For all you know, one of you will be killed by a drunk driver next week. No apologies for being so dramatic, as I think you'll get my point.
People who die soon after an HIV diagnosis generally have another complicating condition or two or three, kill themselves through unhealthful behaviors, or had been infected for many, many years of blissful ignorance. In most of those situations you see a common lack of self-care. That doesn't sound like where the two of you are, though.
As for this idea of once you start taking meds, you're stuck with them: guess again. Every day one takes meds, one is engaging in a conscious choice to continue taking them. One never loses the freedom to choose to stop taking meds. Admittedly, being off meds will likely leave the bugs uncontrolled, but it may be a choice one needs to take for some reason. As long as one stops meds completely and abruptly, returning to the same meds should not be a problem. Still, you don't want to make a habit of taking meds sporadically or taking such decisions without consultation with a doctor and other informed people.
Lastly, as for Juven, see my rant in the Juven thread. You'd be buying naturally occuring compounds that are excessively marked up. If you really want the active ingredients, buy them in bulk and roll your own!
Cheers,
David
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Well the both of us are in good health and we want to stay that way even though we know the risk of this infection. As for my doctor starting me on meds, he feels that it is time for me to start. My T-cell count was 280 the last check up which is very low in his words. I'm only 23 yrs old and my lover is 22 and as you can see we have to deal with alot and i don't mean to jump all over the place but i have never openly discussed this situation with anyone besides my lover and it feels good to know that there are people out there who won't judge you and will just listen, thank you all
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As for my doctor starting me on meds, he feels that it is time for me to start. My T-cell count was 280 the last check up which is very low in his words.
Yeah, 280 is on the low side where most people would say you should start meds. Do you know what your CD4 percentage is? CD8 count and percentage? Viral load? And what these numbers were the last time you checked? These are also important numbers, and you need to keep a record of them independent of your chart in the doc's office--an Excell spreadsheet is a good tool.
Is your doctor affiliated with a large teaching hospital/med school, e.g. Baylor ot UT? Having a doc who practices in such a setting will often give you access to cutting-edge therapies, though the staff may also be taxed more than a small private practice?
Best,
David
P.S. If either of you smokes or drinks more than a couple ounces of alcohol a week, you need to fix those behaviors to help out your system going into taking meds!
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How long has it been since you tested positive? How long have you been tracking your numbers? Six months, six years?
I still think it's important we have a bit more information before we start doling out advice.
What kind of drug trial is your doctor suggesting and why? Sorry to be so nosey but it's hard to give accurate advice without a bit more background. It's important we not diagnose over the internet.
Anyhow before I forget, welcome and cheers.
Hal
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Yes , welcome, welcome.
I recognize there is soooo much to process at this time in your lives. There is so much information and "dis-information" out there that it is mind boggling and probably very scary. I would also suggest you guys find support group in your area or at least try it out for a bit. Just try not to isolate yourselves.
keep us updated and good luck.
Sharkie ;D
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We have one of the best doctors in the metroplex, he was named top doctor of the year. He graduated from Baylor