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HIV Life >> I Just Tested Positive

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Scotchula
Member

Reged: 07/29/05
Posts: 18
Update...and a little nervous..
      #161208 - 10/05/05 03:08 PM

Hello all...its me again..:-P Just wanted to share some news and concerns..

I just had my follow up visit to my specialist. As some of you may know I was diagnosed the end of this past July. I finaly got my first/basline VL and CD4 test back. Several of you warned me not to be too shaken by the resaults. Well my VL didnt freak me out to much, but my CD4 count still came as quite a shock to me. VL over 750,000..the highest they check for as I understand it. My CD4 Count.....3.....WOW! I must admit that DID freak me out a little. So officialy I was in the latter stages of the AIDS status. Stll trying to swallow that one.

Anyhow since my first visit I have gained nearly 30lbs back. My dry cough is long gone and I've been free of watery stools and the halasious gas that seemed to accompany it for over three weeks now. So it seems this combo of Sustiva and Epzicom is doing the job. The follow up tests should confirm that I suppose.

However I have some recent concernes and I'd like to pick the collective brains of all you peeps on this board.

Before my official diagnosis Dr's kept asking me if I ever had night sweats. I could honestly never give them a definitive answer. Yes there were times I would get hot and a little sweaty at night and would kick off the covers. But I'm not sure I could call it a 'nightsweat'. Well during these past few months of theropy/recovery, I feel confident that I can finaly say I had/have nightsweats. I mentiond this to the dr. he asked me a few questions about it and stated it could possably be a sign of my immune system kicking back in. I suppose this makes sense as otherwise I have been feeling better then I have in over a year. Not to mention the other obvious physical signs of my improveing health. Anyone care to share their oppinion? Anyone else with the same experience?

My other question/concern is this. Some of my symptoms during the latter stages of my illness were of course consistently watery stools, quite painful gas in my lower bowels and even gas on my stomach. With my apparent recovery the dr seemed satisfied with the conclusion that these were caused not by some parasite or infection, but rather the overall level of virus in my system. I'm inclined to agree. My concern is, the day before yesterday I had a slightly loose bm, not watery, but very soft. Haveing been free from the slightest signs of diarrhea for nearly a month now it kinda gave me a nervous feeling. I convinced myself not to over react and therefor didnt mention it to the dr during my visit yesterday. Well yesterday evening while I was at work I had some mild gas on my stomach. Needless to say that got my heart beating a little faster and NOT in a good way. It brought to mind the fact I read (on this site I believe) that one of the down sides of Sustiva is that the virius can sometimes develop a resistence to it rather quickly. (And this in turn basicly voids a whole class/family of HIV drugs)

My question is, Is this something I should be worried about? or am I over reacting? Even as I type this I am feeling that mild gas on my stomach I had last night. Funny as it may sound, with every burp I feel as if I am hearing another nail in my coffin. I suppose its possible that the gas on my stomach (before and now) had/has nothing to do with the HIV. But with the overall 'luck' i've been haveing lately I'm having a hard time convincing myself that all these combined facts are a coincidence. Anyone out there with some positive news? IF it IS something I need to worry about what should I do? With my obvious improved health my latest VL/CD4 tests will likely look good. But my next appointment with the specialist isnt till the end of January. I'm affraid that if the virus is just starting its resistence-rebound I will be pretty bad off by then.

Any suggestions on what I should do?

thanks for any input..
Scott

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robertjr
Newbie

Reged: 06/01/05
Posts: 2
Loc: oregon
Re: Update...and a little nervous.. new
      #161213 - 10/05/05 05:12 PM

Hello my freind , I just read your post and it was like reading my own story all over again . I was diagnosed in 2000 with very similar numbers as you ( my cd4 count was "2"VL over 100,000)i went through the same concerns and worries as you are going through right now . Every little spot i saw on my body was "AIDS related , i though .I have been on sustiva since the begining with really no bad side effects ( i have had some incredible dreams ) But keep in mind every one reacts to the meds in a different way . I am now healthier then i have ever been , with an undetectibe VL for almost 4 years now and a CD4 count as high as 900. Adderence is the key. Keep track of your side effects and do not hesitate to mention them to your DOC , Thats what hes there for .I do alot of councling for newly invected people and you are not alone in this . Keep a positive attidude and you will be fine . We are so lucky now to have the incredible meds to help us all keep this nasty virous under control. Here is my email address if you care to chat some more. rfsinorg@comcast.net. Take care and take a deep breath !!! Always ,
Bob
P.S. I am also on Epzicom

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ScotCharles
Legend

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Re: Update...and a little nervous.. new
      #161277 - 10/06/05 09:29 PM

Believe me if you had had a true night sweat you would remeber it. If you wake up in the morning and you can wring copious water from your pajamas that is a night sweat. Otherwise, it's just a little fever breaking.

Sorry to hear about your DC4, but your meds seem a little "tame" to me for someone in your advanced stages. Maybe you should question your doctor about this, you don't have much margin for error left.

--------------------
Life is a river.
Carpe diem.

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cndmldy
Unregistered

Re: Update...and a little nervous.. new
      #161605 - 10/11/05 12:11 PM

Scotula, Approx 30% of HIV+ folks, when receiving their baselines for CD4 & VL and reviewing their health hx (history) meet the criteria for AIDS. Your med. regimine sounds good. I f you have concerns about resistance, speak to your dr. and ask if he is considering testing for resistance. Genotyping/phenotyping are available. Are you in recovery? Do you have an emotional support system.? I have been working with HIV+/PWAs since 1989. After 1996 when PCR (polymerase chain reaction tests) became readily available as did the protease inhibiters, I have seen patients with no reading on repeated CD4 tests and with VL > 750,000 become, healthy, happy,productive and able to rejoin the workforce or even start one's own business. Education so as to be able to play an active role in one's treatment and 94% or greater adherence to your medicines and doctor's visits will strength your immune system and decrease your VL. Keep in touch. cndmldy Stay safe from re-infection--there's always a chance to p/u a resistant strain.

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ang89
Regular

Reged: 12/24/04
Posts: 31
Re: Update...and a little nervous.. new
      #161714 - 10/12/05 05:27 PM

Hi how are you? I had the bad diarrea before I was diagnosed. Pretty much just what you explained. I was diagnosed real late just like you. I started meds as soon as I was diagnosed. That was dec2004. So it has not even been a year, but I am doing good on the meds. My vl is undetectable now for about 5 months and my cd4's finally hit 100.
Believe it or not I still get the watery diarea and stomach gas. The dr has been very thorough with testing so thats all it is. I have even gained back my weight. JUst hang in there and don't stress.
I am finding out now what foods I have to avoid, Its been trial and error. It eases up alot but for some weird reason some foods are big no no's. So don't stress to much it could be foods, or meds or whatever. I used to eat everything with no worries. But since I have had aids I still have to watch. That was a big problem even before diagnoses just then I didn't now the cause. I don't know why that is, but I hope this helps you.
Angela

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Scotchula
Member

Reged: 07/29/05
Posts: 18
Re: Update...and a little nervous.. new
      #163531 - 11/07/05 04:05 PM

Thanks everyone for the replies/advice/encouragement. Just wanted to state that as of my last test. I have an Undetectable VL and a slight improvement in my CD4 count. I say 'slight' omprovement in CD4, because I didnt get a spacific # from the nurse I talk to via phone. I was so elated/shocked about the VL that I didnt press for a spacific #. She said 'a little better'.. The Dr DID tell me it will take longer for the CD4 to rise. As far as the stomach gas goes...well thats just it, it comes and goes..I'm begining to think that perhaps it has nothing to do with my condition at all. I don't notice any particuler foods helping, or hindering it. In fact I can be burping even when I have had nothing to eat. My BMs have all been 'normal' Id say 95% of the time. So now I am just concentrating on keeping a positive attitude. THAT HAS been tough.. Have had a few emotional CRASHES already...one major one due to the thought of losing my med assistence, Its had enough fighting this 'beast' I've got inside me without haveing to go in front of the 'judge' to see if I still qualify to boot...I admit the thought has come accross my mind more then onece to just stop my meds and let nature take its course. Sometimes I feel that if allmy life is going to consist of now is a lonly struggle just to survive, I'd almost it rather be done with sooner then later. However my rational brain always tells me that would be a selfish thing to do to my parents and THATS the only thing I think had kept me from doing something rash. I hope that rational keeps pulling me thru, or that I can find something/someone else to hold on to. I havent really shaed that last pert with anyone, even my parents, who have been my only 'in person' emotional support thus far. I dont want to burden and scare them with the thoughts going thru my head. But as with all days, there are good ones and bad...today is a medium one due to a budding relationship occuring in my life...you can read about that in another post. But again, thanks everyone, evey time I come here I say to myself I should come more often. But life happens...



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