HIV won't kill you, the meds will (or not!?)

[zeb]

Hi all,

After a talk with the nurse practitioner i had some really mixed feelings. She said: well nowadays you won't die of hiv, we see more people dying of renal disease or heart disease they get from the meds. Well if the hiv wont catch me the meds will i thought.

Is there anyone who has some more knowledge or experience about the meds stuff. It worries me. I would be pleased with by a serious reaction and not stuff like: 'oh here we go again about lifespan', 'live your live day by day' or some other so called funny stuff. That i heard too much. This is really a serious request.

Thank you
Zeb

[risred1]

I am always concerned that when statement are made to us as the state of treatment and what is happening to us as a group gets jumbled up with an individuals course of action.

What this means is, what is happening to others does not mean this will happen to you.

There are toxicity concerns with these meds, but remember that becoming a long term survivor means that your may gain life extension with meds, which means other things may occur that is inevitable for us all, regardless of our medical condition.

Current state of the art treatment has not been around forever, may people with AIDS and HIV infection did not have the advantages of these newer, and hopefully, better drugs. May people started treatment later in the disease cycle, which made the benefits provided by the drugs less robust than if we start treatment at the new guidelines of CD4 350 and VL at 100,000. (there are guidelines available that spell out all the scenarios.) So today, it is likely you will do better than those who had less options in the past.

Additionally, knowledge about the side effects continue to grow, and i believe, doctors are getting better at monitoring for these issues. There is also growing knowledge on the nutrition side and supplement side that may help mitigate some of the toxicity issue with the drugs. And lastly, there are many choices so if one combo is a problem, other comob's are available, with many many many new treatments in the pipeline.

So essentially, i gave the standard speech i hear from my doctors, and what I'm perceiving from others on the internet. You have to be careful not to get sucked into alarmist rhetoric about treatment. One of the problems we with HIV is that we a feeling that we are alone in our struggle with HIV. This has alot to do with the stigma associated with the condition. Remember that lots of people have diseases and take medications to manage them and they have to deal with side effects too. We are not special that way.

What is important most of all is how we educate ourselves about the medical options that are out there and how we can take advantage of them. Combining what our doctors help us with medically with our own initiative to live a healthy disciplined lifestyle, eating the right food, taking the right nutrients and getting exercise and managing our care.

There are many people who have problems with treatment, there are many who are doing great, which we tend to hear less about. If your Doctor is recommending medication, then make sure that your taking charge of your treatment by doing the research you need to do. Not an easy task, but there are many sources of quality information out there that can help you.

Additionally, if your are borderline on treatment now, there are things you may be able to do via health choices and supplements that can bring you back from the border to stay med free, maybe.

I'm at that border myself. And I've been able to hang in there for 2 years using supplements and exercise and taking care of my gut health. I'm about to add some serious ECGC supplementation to my supp combo which may help me stay above the line. But I am ready to go on a regimen when I hit that mark, around cd4 count at 350. At this level CD4 tends to bounce more significantly up, and meds are better tolerated. Additionally, this allows for breaks down the line so that one may essentially detoxify for a while, before going back on once cd4 drops back in the range where we want treatment to start.

If you fit in this class, generally you can do pretty well, you may be in other situations and you will have to manage differently, but if you can do a total package of  meds + lifestyle, one could reasonably expect good results.

Health isn't just going to be determined by your pills, its going to be a combo of what you do, how you reach out for other things that can help you get through some of the negative aspects of treatment.

Lastly - HIV will eventually destroy your immune system, and with it comes the opportunistic infections. Don't forget that HIV and AIDS has their own side effects as well, such as wasting and dementia. So its a balancing act, prevent the OI's and HIV problems for some other issues that can provide longer life with than without, and work to understand your options, and take good care of yourself to optimize the treatment you choose.

I hope this helps a bit with the perspective. There are lots of opinions on this subject from - MEDS will KILL you, to MEDS SAVED and Continue to SAVE my LIFE. So I hope you don't develop selective hearing. A Positive attitude is very important and most long term survivors will tell you. You have to believe!

cheers!

[budndallastx]

Risred1 makes many good points.  In the past, doctors treating HIV focused on the virus since their patient's life expectancy was limited.  Today, people are living longer and they're having to treat the whole body and not just the virus.  There are breakthroughs each and every year so overtime the meds are less toxic and more potent. 

One thing I have noticed is people tend to dwell on the bad and many posts you'll read will have that slant but overall I would venture to say more of us are not having issues with the drug regimens we're taking.  The key is to be active in your treatment.  Ask questions and express your concerns when you talk to the doctor.  This forum is also a great site to ask questions and get a variety of viewpoints.  I have learned a tremendous amount from others on here. 

Finally, we're all unique individuals and will react differently to the medicines.  One person's experience will not match another's.  One friend on here takes AZT with no issues while another has been taking the same medicine combo and is having issues with Lipo.  Your experience with the meds will be totally unique to you but the support is available if you ask for it.

Wishing you the best ...

[allopathicholistic]

The key is to be active in your treatment.  Ask questions and express your concerns when you talk to the doctor.  This forum is also a great site to ask questions and get a variety of viewpoints. 

Hi Zeb. Just to expand on the above quote here's a thread from last summer about "taking charge of your own health"

http://forums.poz.com/index.php?topic=1874.0

It's interesting