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HIV Life >> Living With HIV

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eleniel
Guru

Reged: 05/27/06
Posts: 239
Loc: Utah, USA
nervous!
      #194251 - 06/02/06 11:26 PM

I was first diagnosed a little more than a year ago, and have been going to a doctor for a little while now. I'm nervous though because she's been talking about possibly starting me on meds sometime in the relatively near future. (i'm not sick enough yet I guess) My VL was pretty stable for a while, but it suddenly jumped a lot, and my CD4 count dropped quite a bit too. We've checked the levels agan and they aren't climbing (or dropping) as fast, but they are still getting worse.
I don't really want to start meds though. I know they have benefits but I've heard horror stories about people taking medications and how sick they make you.
I really hope I dont need them for awhile, but if I do I dont have much of a choice.
I'm just looking for others experiences with this sort of situation and possibly any reassurance anyone might have.

--------------------
6/29/2010: vl 68,000 cd4: 205

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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: nervous! new
      #194253 - 06/02/06 11:36 PM

Im four months into meds and doing eveything I use to do. This is an eventuality that you need to prepare for Eleniel. Your mental attitude that these drugs will allow you to live a productive life is my way of thinking about taking meds. Meds will allow me to live.

What are your numbers including your % and if you have two sets, please post those. We can better help you here...

The meds in 2006 have less toxicity levels if any and first line regimens will last you a good long time. And in the very near future, a new line and class of drugs will shortly be released. You need to address these fears and continue to ask people about going on meds. Every one is different on how their body agrees to certain aspects, your doc will work this out with you to find the best combination therapy for you. Try and stay focused on the good and not the bad. Keep talking...

Love

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eleniel
Guru

Reged: 05/27/06
Posts: 239
Loc: Utah, USA
Re: nervous! new
      #194255 - 06/02/06 11:48 PM

The first time I went in my CD4 count was 1040, VL was about 270 and I think the % was 1.3?
I dont know the current % (its on a paper somewhere around here) but the CD4 was around 600 and the VL is around 3,000.
Like I said, the tests have been ran again a few times, so its probably not just a brief thing.
I know the meds are a good thing, and I keep tryng to convince myself of that. I'm probably mostly afraid of the fact that taking meds means things are changing..maybe not much in my day to day life, but on a different level.

--------------------
6/29/2010: vl 68,000 cd4: 205

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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: nervous! new
      #194256 - 06/02/06 11:59 PM

With those numbers (untrended) you could be looking within the next 1-2 years. But you really have to have 9 months worth of labs to really get a good picture at how your body is fighting the virus unaided. Your Doc should not start you until you reach a 350-400 cd4 count trended. This is the current mode of thinking. You will never be sick. They will start meds before you are at risk of any OI's and those begin being possible at the 200 cd4 mark and below. You have time to continue to talk to people who are on meds and get reasurance. Continue to ask questions. Ask us what its like. Right now, for me, its a peice of cake.. I am adherant, have a outstanding doc who cares about me as a person and friend. Thats what you want to develop with your ID Doc. I presume your doctor is a HIV specialist and not a GP etc... You still as far as I am concerned quite a ways away from meds. But use this time to learn about this aspect of your eventual life. It aint but a thing!!

Love,

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eleniel
Guru

Reged: 05/27/06
Posts: 239
Loc: Utah, USA
Re: nervous! new
      #194257 - 06/03/06 12:06 AM

yeah the numbers at the moment aren't really scary. its just how quickly it changed from its relatively steady status for a year..so she's been talking about it..not to the point of serious 'we're starting next week' but its at the point where she says I should start considering it as a future possibility.
Yeah she specializes in HIV (not a GP)
So really I'm just trying to get reassurance and possibly some accounts of other peoples experiences so I have some sort of idea of what could potentially happen.

--------------------
6/29/2010: vl 68,000 cd4: 205

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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: nervous! new
      #194258 - 06/03/06 12:25 AM

Lastly, and I leave this alone. My partner's numbers are 700+ and around 1700 vl load. Our HIV Doc is saying 1 to 10 years from now is his window. I know its a big window, but everybody reacts a bit differntly to the virus... She is just preparing you. As well, CD4 fluctuate like the winds! Thats why you really need to have these cd4 counts, viral loads and %'s written down for us to have a really honest discussion. But your doc will take great care of you and will never allow you to fall into danger..

Love

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Blixer
Legend

Reged: 01/10/06
Posts: 599
Loc: Missouri
Re: nervous! new
      #194296 - 06/03/06 11:02 AM

eleniel, I'll jump in here. I'm not sure what is going on with whoever is afraid to reveal who they are and discounting everything that is said here. I was one of the unlucky ones that had to start meds within 3 months of being diagnosed. My CD4 absolute counts were good but my percentage was low. I took the advice of my doctor and I started meds. Eric has been lucky in that his side effects have been totally minimal. On the other hand, my last two months have not been as easy. I didn't experience any of the "normal" side effects but I had some rare ones. It has not been fun, but the doctors kept telling me to try to give it enough time. I had to change one of the meds after only 17 days because of side effect (pain). Today I'm like just over 50 days into this with the meds and for the first time I can say that I'm seeing my side effects start to resolve. The drugs affect everyone differently. My good friend in South Dakota felt awful for the first week. Stomach and instestinal issues were his problem. But after a week he said things were tolerable and after six months he said he had no problems at all. Listening to those that actually have expeirence dealing with the drugs I find that yes, there are side effects. Some of them can be unplesant. Some of them can make you have to change drugs. But everyone tells me there is a combo that works for you and has minimal side effects. Maybe you will hit that first time like some do. Maybe it will take a few weeks. It's okay to be nervous about the meds. But in the end, they will knock this virus down. In only 17 days, my VL went from 66,000 to 600 and my CD4 % went from 12% to 22%. That's reality.

--------------------
David
Sustiva, Epivir, Videx EC


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posintherockies
Regular

Reged: 04/06/06
Posts: 36
Loc: Northern Colorado
Re: nervous! new
      #194321 - 06/03/06 12:57 PM

I went on meds right away but I was in the hospital with cd4 of 15 and VL of 139000 and after four months I'm at cd4 115 and VL of 102. The side effects I experienced were extreme fatigue in the first two weeks and I've had GI problems ever since the day I started. Fortunately I haven't had any other major side effects. Some tingling in my hands and feet and some skin problems. But by sticking close to my doctor and being an active participant in my new job of PWA they have been manageable. The results have been worth it to me. I have been very, very, very fortunate. A lot of people have it rougher. But by asking what others have experienced your getting a lot of information, taking charge, and I know that is what helped me get over a lot of my underlying fear. Notice I didn't say "all"!

I also found a support group at an ASO about an hour away and that helped me not feel so alone. I love the people on here but I needed to see other people like me and not feel so crazy!

--------------------
It feels so good when you let go of all the drama in your life!!!!!!

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alivehoping
Legend

Reged: 04/05/06
Posts: 655
Re: nervous! new
      #194337 - 06/03/06 01:36 PM

when you start them things will change you will be constantly taking them and if you get some discomfort you will have to bear with them,i have been having a terrible time with my stomac but my doc gave me a scrip for another pill for that but doesnt seem quite enough,just stay faithfull to your meds,and stay connected to your doc,if problems araise

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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: nervous! new
      #194339 - 06/03/06 01:54 PM

Well, AH, if I had money I would not be holding down two jobs and working 80 hours a week for the past 4 years.. But, when I get my first pay check from the drug companies, I will share it with all of you... Dont hold your breath..

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victor noir
Unregistered

Re: nervous! new
      #194430 - 06/04/06 06:53 AM

I follow this site alot but respond infrequently. I understand the attempts to keep a positive outlook but Eric to say that the poster will "never get sick" as a result of this SOB virus and thanks to the medication, is perhaps going too far. People are living longer thanks to the meds but many are still getting sick even dying after treatment fails. Remain optimistic yes but lets not give the illusion that life will be a bowl of cherries living with HIV.

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Blixer
Legend

Reged: 01/10/06
Posts: 599
Loc: Missouri
Re: nervous! new
      #194460 - 06/04/06 01:19 PM

The facts are that starting treatment today (as even opposed to a very few years ago) you have a high liklihood of keeping the effects of the virus at bay for a long time. We are always treading new ground with this thing. It has been full of unfortunate surprises. But the future outlook is bright. There are no guarantees in anything in life. But most doctors that deal with HIV on a day to day basis will tell you that if you stay on your treatment that the odds are very much in your favor of having a long and healthy life, or at least that whatever happens won't be from some opportunistic infection allowed by the weakened immune system. Everyone of us still has all of those other health risk factors sitting inside of us... heart issues, cancer, diabetes, etc. As we age, those regular diseases are still out there after us.

--------------------
David
Sustiva, Epivir, Videx EC


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eleniel
Guru

Reged: 05/27/06
Posts: 239
Loc: Utah, USA
Re: nervous! new
      #194461 - 06/04/06 01:23 PM

I found the paper. It looks like the cd4/ cd8% is 0.6
My dr talked to me about this stuff but I'm not entirely clear on what that means.
Totals (so no hunting is required) cd4 600, vl 3000, cd4/cd8 0.6
i've been going to my doctor for a few months (four or five), and while its not 9, my levels were remaining relatively stable (they were messed up a little in february because I got really sick). Also I dont get along very well with her but I don't have many options where I live (and from what I've been able to find out, she's one of the best in my area).

--------------------
6/29/2010: vl 68,000 cd4: 205

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franfrog
Legend

Reged: 01/05/06
Posts: 1342
Loc: NJ
Re: nervous! new
      #194557 - 06/05/06 07:39 AM

He eleniel. I was diagnosed almost a year ago(Jly 20th) and at that point I was in the stages of AIDS. I did not have much of a choice of starting meds BUT I do have to say, I have not had any of these horror stories. I had some holucinations the first night on my sustiva but other then that I am fine. My counts have jumped so much in that time that I shocked even my doctors.
You will have some side effects with some of the meds but do not think they are all bad. Usually the side effects will wear off in about two weeks. To think they are doing you a lot of good compared to the bad to me is defenitly worth it. Without them I would not be here today.

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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: nervous! new
      #194991 - 06/07/06 08:18 PM

To Anon - I have NO illusions - My life will be "a bowl of Cherries" I do prefer "Peaches" however.. I guess you need to decide what a Cherry is! Given the fact I have one of the best Doctors in country telling me otherwise who keeps up on every single aspect of this condition and teaches around the world the latest developments in HIV/AIDS technologies, therapies and future advancements, who is on the cutting edge of this, I choose to stay where I am and proclaim HIV/AIDS in this day and age to those newly infected and optomistic approach.. now breath...

Love

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