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Author Topic: Should I start...?  (Read 11920 times)

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Offline Longislander

  • Member
  • Posts: 2,486
Should I start...?
« on: September 15, 2006, 09:30:12 PM »
Hi people, I've been mulling around this place for a couple of weeks now. Posted some replies that were long and may have been hi-jacking-sorry for that. Anyway I've read the welcome and here I am starting my thread.

I'm now 42 years old, smoke, and haven't been to the gym since the fake flu in Nov'05

I tested positive 12-10-05 ( believe to be infected in Oct'05)
2/22/06 379/57,000
5/22/06 ?? /37000 (they forgot/neglected too/didn't want-to test for cd4's?)   
          no we're sorry, FU, nothing-lol
7/25/06 349/9,500 (new doc!) lol

I had hairy Leuk. (2 docs, same place, diff opinions) from Nov '05 to about 2/06. Thankfully went away on it's own.

I have a little bout of molloscum contag..being treated by derm.  which is the first thing i had just before the fake flu (just one bump, had no idea what it was, and spread it myself!)

My new doc/staff are great people, and really seem to care about me.

Doc is a big proponent of starting early, wanted me to start meds in Aug '06, but I put her off til next labs. Guess what?? She made my next labs 6 weeks instead of 3 months-lol! Appt. is 9/19/06

I don't know if I want to start meds yet. I feel fine, quite normal actually.
I believe I have always had mild depression issues, never treated. Stories in here of Sustiva scare me. Of course, Atripla is what she's mentioned.

I read in here that molloscum is an OI-very scary. Chart says that if you have an OI , you should be on meds.

Any advice for me? The people in here (mostly, yeah read those other threads-lol) are great people, and I'm glad to have found this place, even late in my game.

Paul
« Last Edit: September 15, 2006, 09:33:17 PM by Longislander »
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline J.R.E.

  • Member
  • Posts: 7,259
  • Joined Dec-2003 Living positive, since 1985.
Re: Should I start...?
« Reply #1 on: September 15, 2006, 10:35:47 PM »
Hello Paul,

Sounds like you have a pretty good doctor. Thats great....It's important to have someone knowledgable, and someone you can have trust in.

I think your doctor was wise ordering blood test in 6 weeks instead of  3 months from now. Of course, as you know it will ultimately be your decision in starting meds, and I know it's not an easy one, because it does take quite a commitment to take these meds everyday.

As far side effects, everyone is different. When I started on meds, I had very little problem. I took a few days off from work just in case, but I ended up not really having to do that. I still continue to work everyday, and haven't missed more then three days in the past three years.

My own opinion would be, that you are indeed getting ready to get started on meds. The idea is to rebuild the t-cell and get the viral load to <50. Even though right now your viral load is low. I think you are still bouncing ariound a little on your numbers, and your blood tests in 6 weeks could possibly make that determination on starting meds.

Remember, you want to avoid any OI's. You are still above the 200 count where Oi's can occur, but that still doesn't mean, that you can avoid them. I can tell you that I certainly didn't want to start on meds, But by the time I was started on meds, I couldn't get the presription filled fast enough. I made a a drastic mistake of holding off way to long, and as a result of that, became quite ill. I just don't want to see you or any one else get that sick. My main problem before starting on meds, was dealing with fatigue. It was actually chronic fatigue !! But even with all the fatigue, I really wasn't feeling bad, maybe that was because I was so damn tired all the time ( wasn't awake enough to feel crappy) :-[


So, I know its a tough choice, but it is a decision, that you will not be able to put off indefinetly. Hang in there....Lets see what those next blood test results bring.



Take care of yourself-----Ray




Take care-----Ray
« Last Edit: September 15, 2006, 10:37:53 PM by J.R.E. »
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 8/25/14,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline Longislander

  • Member
  • Posts: 2,486
Re: Should I start...?
« Reply #2 on: September 16, 2006, 01:20:28 AM »
Hi Ray, thanks for the reply, you make sense. The tiny sensible side knows I should start, but the bigger part of me is just too afraid of it all. makes it all more real and permanent. After being diagnosed in December, I caught a cold at Xmas, and another in late January. Both kept me up all nite thinking I wasn't going to wake up in the morning. Since then I haven't had anything even resembling a cold coming on. I'm guessing the drop in VL is the reason that I'm feeling fine these days.
As far as fatigue goes, I have ALWAYS beena fan of huge naps and sleeping in. I'm also afraid I'll never be ina state of awake once I start!! lol
Again, thanks for the reply, we'll see what the # show
Paul
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline J.R.E.

  • Member
  • Posts: 7,259
  • Joined Dec-2003 Living positive, since 1985.
Re: Should I start...?
« Reply #3 on: September 16, 2006, 05:45:08 AM »
The tiny sensible side knows I should start, but the bigger part of me is just too afraid of it all. makes it all more real and permanent.
Paul


Hi Paul,

Yes, I do know what you are talking about. I have mentioned this before, but I always thought that I could prepare myself for starting on meds, I was totally wrong at that., and 17 plus years into infection, I finally had to get started on meds. The point is though, I should have started sooner. Hang in there Paul, keep us updated, if you have any problems before your next blood tests, just make sure to bring these problems up with your doctor before hand. Believe me, it's much better to stay on top of things... Listen to your body....


Take Care------Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 8/25/14,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline Longislander

  • Member
  • Posts: 2,486
Re: Should I start...?
« Reply #4 on: September 19, 2006, 12:46:33 PM »
Just back fromt he doc this morning. We did another lab draw,and talked about meds. She says my # at this point don't warrant HAVING to start. Last was 349/9500. I asked about % today, and it was 25 last time. She also doesn't think I have molloscum blah blah blah. I'll have to ask the derm on Thursday when I go. She never said it was either. It all started with one bump on my lip, and the lab report came back a wart. Who knows. But we did discuss my need to stop smoking, get back to the gym, and eat a bit healthier. Also, because of my sleeping problems,( I can't fall asleep at night, but can nap all evening!! ) She won't start me with Atripla. of course, next draw is 6 weeks again!! lol So much for every 3 months, but I know she's looking after me, and that part is awesome!!! ;D
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline blondbeauty

  • Member
  • Posts: 1,784
Re: Should I start...?
« Reply #5 on: September 19, 2006, 02:37:33 PM »
You donīt need to start meds and your viral load is very low. But since I was diagnosed I always wanted to start medication. My main concern and what kept me awake many nights was thinking about how to convince my Dr. to start. My cd4 were always above 600.
I preferred to deal with side effects than finding one day that my cd4 had drooped below 350 which the lowest counts I was going to accept.
Finally I decided to start when my cd4 were 503. There is no proved advantage in starting so early, but it has given me some peace of mind. My only concern now is knowing if I am resistant to my meds, but I must also recognize Sustiva and Truvada was the combo I had in mind and what my Dr. recommended me.
I have had very little side effects the first 3 or four days. Prior to starting meds I didnīt sleep very well, now I sleep like a baby. Maybe it was not necessary, maybe my meds are not working...but psychologically, meds have changed my life and I will never regret my decision of starting so "early".
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline Longislander

  • Member
  • Posts: 2,486
Re: Should I start...?
« Reply #6 on: September 19, 2006, 05:10:52 PM »
 Thank you so much for sharing that with me. I've looked and looked at y and when. Another guy in a another place also said to me he felt so relieved right after taking the first pill. My doc also told me today that we don't want to wait til my cd4's drop to 200 or 100's. You said you had very little side effects the first few days, I'm assuming they didn't come after that?. Did you have one of those resistance tests done before starting? You're only a month into the pill now, when does he have you back for new labs?

I have always been a night person-with a day job. A very bad habit borne of always being sent to bed in the daylight when I was little. My mind thinks I'm going to 'miss' something. Now I'm awake because of all the 'what's going to happen to me crap', and thinking what I need to do before I die or get really really sick. I'm going to try my best to change my lifestyle in the next 6 weeks to my next appt. I'd rather start with the Atripla becvause the adherance of the meds will be an issue for awhile.

I wish you the best with your meds, and can't thank you enough for responding.
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline blondbeauty

  • Member
  • Posts: 1,784
Re: Should I start...?
« Reply #7 on: September 19, 2006, 07:55:29 PM »
You are welcome, Paul!
No. I didnīt have a resistance test done by my Dr. I had one done at another clinic but never went to collect them, so I donīt really know if my meds will work. He said it would not help much. I didnīt understand the reasons very well or why did the other clinic do the resistance test...whom should I trust? I preferred to trust him and believe his words "you are going to do excellent, trust me...If you are able to tolerate meds, the problem is solved" and the other clinic is a bit depressive because it was were I was told I had HIV in a not very professional way.
My Dr. is crazy, but he is the chief of residents, and teaches at the university. Everybody in the Hospitals says he never takes holidays, has no private office (only works for the national health system), and gave me his private cell number to call him if I had trouble with my meds. He is obsessed with his work and the, lack of personal life, is what makes him really weird. He must have a very special wife. He is not divorced! But I learned how to manage him and, the most important thing, agreed to put me on meds when I asked him to. So many sleepless nights thinking on how to convince him, for nothing.
Today I had my first bloodwork done since I started on meds. Until last month I had my blood drawn in a special department "immunology" with very few patients an never had to wait more than 15 minutes. Most of the time I was the only patient. But they have changed the procedure and had to go to the general blood extraction waiting room. I had to wait one hour and a half...It was horrible, but the nurse was very nice and very professional. She was not wearing gloves!
Side effects: I felt very dizzy and drowsy the first night. I could not walk on a straight line. I was bouncing against the walls on my way to my bedroom. Once in bed I lost sensibility on my face and hands. My breath was deep and slow and fell into a very deep sleep. It was like being in coma. I slept for 11 hours.
The second day side effects were less intense and disappeared completely in one week.
I feel drowsy if I take sustiva on a full stomach, but the feeling is nice. In fact, next month I will be flying (I am a flight attendant) long haul flights again. I feel capable of working at night with no problem. So you wont miss anything.
We donīt have Atripla in Europe yet. Probably next year...But I think it is far more important the number of times you have to take pills each day than the number of pills you have to take each time. For me it makes no difference taking two pills at the same time than one, provided it is only once a day. I link my meds to the brushing of my teeth. I can never go to sleep without feeling my mouth fresh. After brushing my teeth and using the wonderful "Waterpik" I take my meds. So I never forget. You could do something similar.
Take your time to make a decision. You donīt need to hurry and your numbers might improve on their own because your infection is very recent.
I wish you the best!
Hugs.
Juan
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline Longislander

  • Member
  • Posts: 2,486
Re: Should I start...?
« Reply #8 on: September 19, 2006, 09:50:44 PM »
Juan
You're awesome for giving me those details.  The thought of meds help me have sleepless nites, and I now realize I need to take it slow, work on things I have control over, and worry about #'s only when they're reported.
Interesting doc you have, glad you're able to 'manage him'. I don't know half as much about my doc, except that she's very young, and very nice. She spent over a half-hour talking to me today at my visit, which is really cool. She also introduced me to the new Physicians Asst they hired. Another very attractive woman (there'll be no threat of me developing a crush on my hunky doc!), who seemed very nice. The doc is only there 2 days a week, but apparantly the PA will be there full time, and they want us (me) to call with ANY problems we're having. They also have a Certified Social Worker, in case we need to talk. It's a small office, funded by Ryan White Org. somehow. But it is only a 20 minute ride for me, and in a beautiful town. So much different than when I thought I had to tavel 70 miles to NYC to get the best care, that was a joke and a half!
 I LOVE my waterpik!! excellent suggestion for my meds future. A nightly ritual, just me, my mirror, toothbrush and waterpik, some candles.......
Congrats on getting back to the long-haul flights (I'm guessing you prefer that?). I'm gonna take it that you mean to inform me of whatever it is goes on at nite while I'm sleeping like a baby?? lol

Please let me know what your lab test results from today are, I'm sure the meds are working and they'll be impressive!!

All the best,
Paul
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Should I start...?
« Reply #9 on: September 20, 2006, 07:08:22 AM »
Hi Paul,

I just want to chime in here with another perspective. I've been positive for nearly nine and a half years now and I'm still not on the meds. My numbers have bounced around the whole time I've been monitored. I've even had the odd result come back with CD4s in the 2 or 300s, but they have always gone back up by the next test.

If you're wary of starting meds now, don't. You might be able to go for years before you start and the meds might be even easier to deal with when you do start. As long as you make sure you are checking your numbers at least once every three months, you'll be just fine. You want to look for a clear trend that says it's time to start, not just one or even two isolated not-so-good results.

Right now, your numbers are very good and you have plenty of time to weigh up all the pros and cons. There is no need to rush into anything and don't let yourself be pushed into anything either.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Longislander

  • Member
  • Posts: 2,486
Re: Should I start...?
« Reply #10 on: September 20, 2006, 06:15:45 PM »
Hi Ann, my 1st chance to say Hi to you, I've read many many of your posts these past few weeks. Thanks for jumping in! 9 Years!!??, wow. I can only wish that would be my case. There's a lot to be said for both sides of this issue, one of which being this molloscum/wart whatever, and whether the meds would help me out with that. No guarantee , I know, but that affects my mental stability more so than the HIV! My doc will call with yesterdays results in a few days. She is aware that I don't think I'm ready to adhere properly yet. Hopefully I can remain off them for a little while longer. I'm just impressed by the people who started early, and are doing so well. Cd4's in the 6's and 7's sound much better to me than mid 3's!! I don't want to reach a point of hospitalization for anything because I wanted to wait. We shall see where I'm headed in the coming months. Doc has had me back for labs every 6 weeks instead of 3 months twice so far-will be tested again 11-7. Also getting hep vaccines and will get flu vaccine next visit. Thanks for your perspective Ann, it's something I'm giving a lot of thought to these days.

All my best,
Paul
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline Robert

  • Member
  • Posts: 2,648
Re: Should I start...?
« Reply #11 on: September 20, 2006, 11:51:43 PM »
Hi Paul.

This just out in today's Aidsmeds Newsletter.  Have you read it?

Treating Privary HIV Infection.

It should give you some perspective.

Good luck.

robert
..........

Offline Longislander

  • Member
  • Posts: 2,486
Re: Should I start...?
« Reply #12 on: September 21, 2006, 01:07:36 AM »
Thanks Robert, I hadn't seen it. I'm still confused, but it did add questions for me to think about. I believe I'm past the acute or primary phase (10 months infected). MY VL as of 2/06 (1st test, infected in Nov) was 57k, and has gone down to 9500 as of last labs in August. Will have new #'s next week. I'm sure when I was first fluish in November, my vl was probably sky high, but due to the rigamarole(sp?) i went thru at the place , and many appointments later , the labs draw finally took place late January-lol

Again thanks for the post. My new doctor is right up my butt with this , so to speak, but she also understands that I'm leary!
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline J.R.E.

  • Member
  • Posts: 7,259
  • Joined Dec-2003 Living positive, since 1985.
Re: Should I start...?
« Reply #13 on: September 21, 2006, 05:15:26 AM »
Hello Paul,


Then there was also this study, Make sure to read the last paragraph :

http://www.aidsmeds.com/news/20060918clin003.html


Once again, It sounds as though you have a great doctor, Just keep yourself monitored. This is where I made my mistake.



Take care------Ray


Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 8/25/14,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Should I start...?
« Reply #14 on: September 21, 2006, 07:31:37 AM »
Hi Paul,

Oh, and welcome to the forums! :) Nice to meet you too.

Considering you're not quite out of your first year, it is entirely possible that your numbers will continue to improve without meds. It can take some time for your body to adjust to dealing with and keeping hiv in check.

Something you should keep in mind where your molluscum is concerned - you don't have to be hiv positive to get this problem. It's spread through skin to skin contact and there is no requirement of prior hiv infection. If it were me with the molluscum, I'd try the standard treatments first and give them a chance to work before resorting to hiv meds. Try to keep your hands off the molluscum - it is known that shaving can spread it around the face of a male sufferer, for example. If you haven't already, check out the Molluscum Contagiosum Lesson.

Two more points - in the last year or so my numbers have mainly been in the 6 and 700s, with percents in the upper 20s. The other point is that yes, stress can affect your numbers. You have every chance of seeing your numbers improve now that the dust is beginning to settle, so to speak.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline blondbeauty

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  • Posts: 1,784
Re: Should I start...?
« Reply #15 on: September 21, 2006, 08:32:48 AM »
Paul, your Dr. seems to be excellent and really cares about you. Always follow her advice.
For me, the worst of HIV are the needles for the bloodwork...I canīt even look at them and think I will never be able to.
The only time I was operated the worst part, for me, was having a needle inserted in my hand for 24 hours.
I hate needles. >:(
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline Longislander

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  • Posts: 2,486
Re: Should I start...?
« Reply #16 on: September 21, 2006, 05:33:21 PM »
Thanks everyone, Ray I got the last paragraph, and that seems to be a consensus.
Ann, I went to the derm. today and asked the right questions. I don't have molluscum. What started as a little bump on my lip, a month before I felt the "flu", turned out to be a wart, which I indeed spread by shaving and playing with it. I didn't realize it was spreadable before I ended up also spreading it to my penis a few months into dealing with them.. Derm at 1st look today, thought just hair follicles, but after cryo-ing them to see if they 'light up', they sure enough "lit up". He said it's a very mild case. I had already been extremely carefull not to spread around my face, and it has been going well. My penis, I guess it's time to wach out for that too. I'm not having sex anyway (haven't since before I tested poz). I'd rather have the molloscum, this really sucks.
My doc is great, I wish I had found her as my 1st doc. But they both take this wart/molloscum thing extremely lightly.

And BB- I don't mind a little needle everynow then, and I can watch. But if you're talking about that IV drip in the hand--FORGET IT! lol
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: Should I start...?
« Reply #17 on: September 22, 2006, 06:51:40 AM »
Hi Paul,

If the docs are taking the wart thing "lightly", it's only because it is treatable. Warts are common in the population as a whole and not just those of us with hiv.

But I just have to ask; have you been kissing frogs? :D ;)

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Longislander

  • Member
  • Posts: 2,486
Re: Should I start...?
« Reply #18 on: September 22, 2006, 06:55:45 PM »
lol -treatable but not dateable.  Apparantly yes, I have met a frog in my life, But at first, I had this thought. When first bump appeared on lip and was told lab said 'wart', I remembered one wart I had on my hand when I was about 12. I used to chew on it constantly to get it to go away (which it eventually did). Where the lip bump appeared would be almost exactly where the hand wart would have hit my lips while chewing on it.  I know, stupid kid-lol I thought maybe since I now had HIV, and the immune system is weak, and may have been holding the wart in for all these years, but could no longer hold it. Then I stupidly spread it around myself, It didn't appear on penis until months after the lip.
Either way, I guess I now have genital warts, even though the HIV doc did a pap thing in my butt that was negative. A wart is a wart is a wart.
One ok thing. As I stated elsewhere, I'm finding most men attractive these days, and now my dermatologist gets to touch my penis periodically, and he's kinda handsome!. At least there's someone besides me!
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline alberche

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  • Posts: 212
  • a distancia del mundo incierto, saludo mi suerte
Re: Should I start...?
« Reply #19 on: September 25, 2006, 04:04:16 PM »
Hiya Paul!

Well, I started with meds only 3 months after being infected. I got a very strong seroconversion illness, so I suspected I was infected and made a PCR just one month after the day I though I got the virus. The results were 256.000 copies. I went immediately to the doctor. She indicated for a new PCR and also CD4, STD's, Hepatitis, Toxoplasmosis and so on tests. The blood sample was taken when it had passed exactly two months from the day I got HIV, results came 3 weeks after: viral load dropped to 65.000, CD4were at 1.100, no hepatitis, no STD's, the rest of values were normal..

I was proposed to start with meds, even though "only" 3 months had passed since I got the virus... My doctor told me that I was still in the window of opportunity to take some profit in the future from an early treatment. So I decided to start. They made at that point a genotipic resistance analysis, and results were fine, no primary resistencies at all.

I started with Sustiva+Truvada. Sustiva was even funny, very strange dreams, quite a trip indeed!!! very deep sleep all night long, some dizziness during the day... but nothing I couldn't handle. I was able to drive my car and go to work waking up at 5:30 in the morning since the day after I started with meds. I felt, of course, sleepy, but, in the end, it was a very funny sensation.

By the first week the sympthoms went away. I tooked meds just before going to bed, and two hours after dinner, "on an empty stomach" as the prospect says. Meds are easy to take, just two pils, once a day (Atripla will be just one!!!). I was feeling great. I was, as you are, scared about taking or not pills, had many doubts and fears, but once I started I gained a kind of sensation of control: I was doing something!!! And this released me, I could then concentrate in resuming my daily issues: work, study...

But I had a little problem 3 weeks after: I developed an allergic reaction to Sustiva, with severe rash and pain in the joints. My doctor told me that this was very uncommon, only 3 to 5 per cent of people has the same problem, (having a rush with Sustiva is very common indeed, but it dissapears and usually is mild) and indicated a change in my meds. So Sustiva was substitued by Atazanavir+Ritonavir, keeping Truvada. And that's what I am taking now. Also once a day, but this time, with dinner, four pills... but this is OK.

I will make new tests this week to see the results of all this. My doctor says that maybe I will be one year or so taking meds, and then will stop and check if my viral load settles in a low value and my CD4 keep relatively high. If I do so, periodical checks will be done and I will be then some time, months? years?, who knows! without taking meds... But, for now, I am preparing to see a lesser count of CD4 (1.100 in the first CD4 count were exceptionally high during early infection and probably they are lower now, that's all, I asume it) and a lower viral load, I guess!!!

My case is very uncommon, but in your case, you have a very low viral load and that means that in a way your body is handling the virus to keep it low. In the other side, your CD4 count seems to be a bit low for such a recent infection as yours is, and for such a low viral load... so maybe that's the reason why your doctor tends to propose you to start with meds as well as controlling the virus and CD4 so frecquently.

My experience is that taking meds is not so complicated itself, but all the psicologic issues related to it do are!. You need to be very focused on it, build a disciplinated routine every day, and this could be sometimes hard to achieve. But the question is, once you start, you start, and you have to keep ongoing, so you should be prepared and convinced.

Having someone besides you to talk to, helps a lot!

Hope my experience could help you make the best choice. As you can see, for each one of us this is a unique story, none is the same, and neither our doctors nor us have a lot of certitudes, the key word here is "probably". The only thing for sure is the commitment to keep going on.

Hughs from Madrid, Spain,

:-)
love is blindness...  a wonderful song!

Offline Longislander

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Re: Should I start...?
« Reply #20 on: September 25, 2006, 05:48:57 PM »
Hi Alb-thank you so much for posting that. Food for thought. I'm waiting for the doc to call with lab results anyday now. We shall see!
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline yowsaa

  • Member
  • Posts: 86
Re: Should I start...?
« Reply #21 on: September 25, 2006, 07:59:40 PM »
Hey Paul,

Reading your thread here sure takes me down memory lane ! When I was given the news, I ran out and had a new will drawn up.  Today my biggest worry is if I have saved properly to live a nice life in twenty years time LOL.
Best of luck with the meds and they are really nothing. Monitor at first for adverse effects and tolerability, than your good to go !

My advice:
Get yourself in a med routine, figure your dosing times and possibly even "practise" with say Smarties or vitamins.
I'm in the habit of using a small old prescription container holding the days pills. For me it is such a routine that I sometimes question myself if I remembered an hour after taking them. Hence my little holder. When going out of town for a few hours or a visit somewhere, usually I'll take an extra dose with me for the unplanned events eg: car breakdown.

Offline Longislander

  • Member
  • Posts: 2,486
Re: Should I start...?
« Reply #22 on: September 26, 2006, 06:32:44 PM »
Well, got results today

Cd4 507, 30%, Vl 16,000

NO MEDS YET!!! Huge relief.
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Should I start...?
« Reply #23 on: September 26, 2006, 06:52:07 PM »
Good news indeed Paul.

Those are great numbers. I bet you're glad you waited!

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Longislander

  • Member
  • Posts: 2,486
Re: Should I start...?
« Reply #24 on: September 26, 2006, 07:29:54 PM »
Yes indeed Ann, it was a mental struggle, and really still is a bit as I see people with my # have started already.

But for now, I'm not doing it yet!

Paul (who's still elated!)
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline J.R.E.

  • Member
  • Posts: 7,259
  • Joined Dec-2003 Living positive, since 1985.
Re: Should I start...?
« Reply #25 on: September 26, 2006, 09:07:15 PM »
Hello Paul,

Just want to say CONGRATS on the numbers !! I've been following your posts. Keep it going !!


All the Best------Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 8/25/14,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline blondbeauty

  • Member
  • Posts: 1,784
Re: Should I start...?
« Reply #26 on: September 27, 2006, 06:25:26 AM »
Hello Paul!
Your numbers can still improve. Now you can see what your trend is. You are recovering from seroconvertion and you might have many years of good counts without meds.
My case was the opposite. From 689 cd4 to 503 in less than one year and viral load from 15.000, to 100.000 in the same period...But my infection was older.
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline alberche

  • Member
  • Posts: 212
  • a distancia del mundo incierto, saludo mi suerte
Re: Should I start...?
« Reply #27 on: September 27, 2006, 03:01:00 PM »
Hiya Paul!

Got good numbers!!! you will do OK, you'll see!!!.

Now, the routine of analytics to follow up, and taking good care of yourself. Eat well, sleep well, do not have unprotected sex (reinfections are there!!! as well as hepatitis and other things you better keep away from your body), try to smoke less or stopping it...

Be sure that when the time to start with meds comes for you, meds will be better than those we have now (ask people that started 15 or more years ago!!!!) and that means less problems to take them, lesser side effects...

So, be calm, keep in touch and be informed all the time.

Be good!

;-)

love is blindness...  a wonderful song!

Offline Longislander

  • Member
  • Posts: 2,486
Re: Should I start...?
« Reply #28 on: September 27, 2006, 05:32:12 PM »
Thanks for the good words everyone. Ray, thanks for watching out for me! I'm hoping I can go without for a good little while.
Alb-I have no plans on having any kind of sex, for now, but will be EXTREMELY careful in the future. I've got enough on my proverbial plate!!

Thanks again
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline gusguyny

  • Member
  • Posts: 7
Re: Should I start...?
« Reply #29 on: October 16, 2006, 11:19:12 AM »
Ray (JRE)

Thank you so much for the email I see below and how courageous you've been. I was diagnosed positive last month and found out two
days ago that my cd4 is 32, and my viral load is 368,000. my doctor says he has to put me on meds ASAP....I am so scared and nervous just
finding out that a cd count below 200 is AIDS....I am 34 and in great shape and health (so I thought) and never dreamed this would happen.
Yesterday I started Zithromax, and today my scrpit will be in of Atripla, hoping this wil stop the HIV from multiplying and raise my tcell. We are still
waiting on the blood work to see if I should start taking Dapsone, to prevent pneumonia....The oddest thing is that I feel FINE. I don't ever
recall having any symptons, other than a slight fever......

Has anyone else had these same cd4 and viral load? I am deperate for some encouragement to knowe that these numbers aren't, well, I
don't know what I'm saying. I am so scared.

Thans everyone

Chris
gusguyny@gmail.com

Offline alberche

  • Member
  • Posts: 212
  • a distancia del mundo incierto, saludo mi suerte
Re: Should I start...?
« Reply #30 on: October 17, 2006, 03:09:38 PM »
Hiya Chris!

Well, it seems it has passed some time, some or many years, since you were infected, as per your CD4 count.

Good news you are still feeling well, this could mean that your body can handle not so bad with such a little CD4 count. And that's for sure an advantage. Other people has sympthoms even with more than 350 CD4.

As you have never been into meds, meds are suposed to be working well from the begining, so you will probably see your CD4 count pumping up fastly during the next months. Your VL doesn't seem to be very high related to your CD4 count (I had 260.000 2 months after being infected) and will also tend to drop down.

In a certain moment, you will reach a tender in your CD4 count, maybe this will not be very high, but anything between 200 and 400 or so. What is important is to see if with that tender you remain well and without sympthoms or opportunistics infections, so don't be obsessed with high CD4 counts, quality is more important than quantity.

If meds do well, VL normally will tend to get under 50 copies (indetectable), and, when you have reached that point, the idea is to stay so as longer as possible. If at that point you have no sympthoms or manifestation of opportunistic infections, maybe your doctor will propose to suspend profilactic meds, so you will stay only in your HIV drugs. Since you have never tried before any HIV drug, you have all the possibilities open as per regards of combinations, so that's also good news: you and your doctor have options to choose the better treatment and to replace it in the future if necessary.


It is very important you discuse all your doubts with your doctor as per regards of taking meds. It is not so difficult, but requires discipline and commitment, and the best way to do it is having your doubts answered and feeling comfortable and willing to start.

It is important to respect the dose and hour in which you should take your pills, as well as if you have to take them after, with or before meals. The first days it seems to be a bit complicated, but once you have internalized it as a routine, it will be much easier.

Meds could have some side effects: diarrhea, imsomnia, some dizziness, mild rash, sensation of fatigue... usually they go away or get not so significant after the few first weeks. There are some other side effects that could appear months or even years after starting meds, but this does not happen to everybody and it makes no sense thinking about that right now. Anyway, the most of people taking meds can do their normal life, working, studying, and so on, with no dramatic issues due to side effects. It is important, anyway, to tell your doctor about any sign you feel in your body after starting meds, in order to prevent or properly deal with side effects, if they occur.

I guess your doctor will also think of it, but, anyway, talk to him or her about having a drug resistance test done, in order to better evaluate which meds will suit better for you.

It is also important eating well, a lot of fruits and vegetables, meat, fish, seafood, cereals, drink a lot of water daily... avoid animal fats, frieds, industrial foods, additives... and ask your doctor if it is good a multivitamin  complement.

Try to sleep well and relaxed, keep in good shape, take care of yourself and simply try to continue doing the same things you were doing until know. Life keeps going on, that's all.

Be good, but not too much!!! ;-)

Regards from Madrid, Spain,

;-)

love is blindness...  a wonderful song!

Offline gusguyny

  • Member
  • Posts: 7
Re: Should I start...?
« Reply #31 on: October 17, 2006, 03:29:47 PM »
Mr Madrid, Spain  :D

Thank you, thank you, thank you so much for the feedback. It really helps.

Last night was the first night I took my pill, at bedtime, on an empty stomach. I woke up 3 or 4 times, but slept okay. Today, at work, though I am feeling tired.

And thank you, because I have been thinking about the cd4 count. I feel well and hope to avoid any OI.
That scares me.

Chris
New York City, NY

Offline gusguyny

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Re: Should I start...?
« Reply #32 on: October 17, 2006, 03:43:30 PM »
Alberche (Mr Madrid)

I can't stop re-reading your post you sent....Thank you so much. It makes me feel better that I have been able to go so long with such a normal life with this dreadfully low CD4 count. I will look at it a new way. That I am fortunate to have my health. Thank you soooo much!!!!!

Offline alberche

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Re: Should I start...?
« Reply #33 on: October 28, 2006, 03:57:28 PM »
Hiya Chris!!!

Wow, "Mr. Madrid", that makes me feel as kinda of a movie star!!! (better not to say what kind of movies...)  :P

Well, I am glad you are a bit more relaxed and calmed.  ;)

First days taking meds are always strange days, until this becomes a routine. You will feel reinforced when you have your first labs results after meds.

I have just received my second labs results. In the first ones, blood sample taken in June, I had 65.000 copies and 1160 CD4. In the PCR test I made by myself when I suspected I was infected, in May, I had a VL of 265.000 copies...

In my last labs, blood sample taken at the end of September, after 4 months of treatment, my VL has dropped to <50 copies, that means, undetectable, and my CD4 have gone up to 1280. As you can figure, I am happy.

During all these months all kind of thoughts and doubts have passed through my head... now I feel much better, I am seeing some results, and also hearing the first objective good news since I got infected.

So, as you see, it is possible to go on and step by step achieving your goals.

Do not be worried comparing your progress with those of others, because the situation of each one of us as per regards of infection and inmune response is very singular and this is not reliable nor useful to compare.

This is similar to when you attend to a gym for the first time. What is important is your own progress and that you feel better.

And this is also very good to hear that one's experiencies and points of view are useful for others!!! These are things making life to have sense! And that's why this website is more than great, is "cojonudo"!!!! Your experience is also very useful for me and for may others, in the end, we all are asking ourselves the same kind of questions.

Be good and take care! Let us know how is it going ;-)

Hughs :-)
love is blindness...  a wonderful song!

Offline allopathicholistic

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Re: Should I start...?
« Reply #34 on: October 28, 2006, 09:00:02 PM »
Well, got results today

Cd4 507, 30%, Vl 16,000

NO MEDS YET!!! Huge relief.

love to hear news like this! those numbers rock!


Offline gusguyny

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Re: Should I start...?
« Reply #35 on: October 31, 2006, 03:27:16 PM »
Yes, Mr Madrid!!!!!!!!  Too funny......not referencing any "movies" at all, though......

I'm glad to hear you have such great numbers! I'm happy that you are doing well.

I know, I am not trying to compare my prgress or my numbers to any others as I know we will all have different actions and reactions to meds and whatever our bodies and handling.

I have been very lucky, though, two weeks on meds and no side effects. I told my doctor i was worried, because I thought I should be having side effects to know they are working....LOL...he told me I was silly and should be happy i have had no side effects. I took my 2 week blood tests yesterday and will go back on the 13 of Nov for 1 month blood work.

All in all, it's been getting easier to deal with every day as long as I keep living my life responsibily and not keeping a constant reminder of what I am going through.

Thanks again!!! Ciao!

Chris

Offline chapin

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Re: Should I start...?
« Reply #36 on: November 04, 2006, 02:47:43 PM »
My advice: DO NOT START UNTIL ITS REALLY NECESARY!  I waited until my CD4 where at 200, taking care of myself, and I donīt regret it, taking into account the fact that I did take care of myself in every possible way. 

However, when I started, my life changed.  Iīm not the same person I used to be.  I donīt feel the same way I used to, even my interior feelings have changed.  Physically Iīm ok, great lab results, but Iīm another person.  Many times I feel like a stranger in this body I have to carry and sometimes I forget who I am, or how it used to feel being without all the chemicals I take.  None of the side effects are THAT terrible, Iīve managed to take care of them all, but I just feel different, in EVERY way, I donīt know how to explain it, itīs as if my body is being bombarded by bombs in capsules every 12 hours.

PLEASE take the best care of yourself as you can, in order to postpone your starting meds. 

Offline gusguyny

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Re: Should I start...?
« Reply #37 on: November 22, 2006, 06:02:23 PM »
Hey all....just want to thank everyone who has written for all of your support......just back from the doctor with my results from my first month on meds:

intial reading: Oct 14th
Tcell 32 - Viral Load 368,000

Blood work from Nov 13th:
Tcell 87 - Viral Load 1,700

I've also incorporated KPAX vitamins. These are some really amazing vitamins that discovered on a poster at my pharmacist. They are so good that they have been approved by Medicare for people with low income and on HIV meds. I've also added 300 mg a day of CoEnzyme Q10
and 500mg a day of Reduced L-Gluthathione....research these vitamins if you get a chance.I've read about these vitamins in an "immune system" book i bought.....so far, so good.....It also talks about how much our minds and mental state of being really play a huge part of the healing and recovering process.....Trust me, after finding out my Tcell was 32 (we all know what statistics say, yikes) I really had to make sure that I had "it" and "it" does not have me......

Chris


Offline alberche

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Re: Should I start...?
« Reply #38 on: November 28, 2006, 12:37:27 PM »
Hiya Chris!

Very good numbers for only one month! Next will be better, you'll see. Probably your VL will be below 50 and your CD4 will be over 130-150... wanna bet?  ;)


I'll have new labs on january, hope everything's OK.

I am also taking vitamines, Pharmaton Complex, don't know if it exists in your country with that name, but it is ok, a multivitaminic with minerals and gingseng extract. I take it during one month, then stop one month, and take it again another month.

After 6 months on treatment, no side effects at all, feeling well and stronger.

I'll pass Xmas in Canary Islands, looking for something a bit little warmer than here!!!!

Big hughs!!!

love is blindness...  a wonderful song!

Offline AustinPZ

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Re: Should I start...?
« Reply #39 on: December 01, 2006, 11:10:03 AM »
Paul,

I can understand your situation.  I was diagnosed in Dec 04.  Found a good ID doc and starting seeing him every 3 month.  My cd4 pretty much flucuated between 500 and 600 and my viral load started out low and finally leveled out around 150,000.  So doc kept suggesting and asking if I wanted to go on meds.  My issue with going on the med was, I felt fine.  Slept well.  No symptoms.  So, I stayed off meds until 3 months ago.  I started to have Herpes related infections.  I first came down with HSV1, shortly thereafter, Shingles and then finally Bell's palsy.  This was all within a 4 month time span.  After the HSV1 infection doctor put me on propholactic VALTREX.  500 mg/ twice a day.  But I still got the shingles and the bell's palsy.   So.. I decided my immune system was trying to tell me something about herpes virus infections. 

Talked with my Doc, had just had cd4 level of 690 and viral load of 192,000.  I felt I could not keep having more herpes outbreaks so I've start Atripla and continued VALTREX.  3 Months and no herpes outrbreaks.  CD4 600 and VL 150.    A good friend, who's been positive for years always gave me the advice.  "Listen to your body".  I did and don't regret the start of the Atripla.

Good luck in your decision
Gary

Offline alberche

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Re: Should I start...?
« Reply #40 on: December 03, 2006, 01:39:53 PM »
Hiya guys,

Have you heard about the SMART study conclusions related to structured treatment interruptions?

Here in Spain some doctors have said that these results, in addition to evidence that, once you start meds it is better to keep taking them as long as possible, also point to another very important issue: is it better then keep waiting until people gets to 300-200 CD4 or is it better to start treatment as soon as HIV is detected?

For me this is a very important issue, because  I started on meds only 3 months after being infected, and I was supposed to try an interruption by mid of next year, after 4 o 5 VL tests with a result lesser than 50 copies...

I haven't still had the opportunity to talk with my doctor regarding this... have you got some more information, any impressions from your doctors as well?

Thanks!
love is blindness...  a wonderful song!

Offline gusguyny

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Re: Should I start...?
« Reply #41 on: January 08, 2007, 03:11:13 PM »
Happy New Year, everyone!!!!!

I just want to acknowledge everyone for their feedback, support, and general compassion for everyone here. I think this is a great site and the postings have definitely been a great place to research & get updated.

Alberche,
I hope you had a great holiday in the Canary Islands! I see you'll have your new labs this month. I know it is only the 2nd week of January, but any news? I'm very glad to hear that after your 6th month on meds you are feeling well & strong!!!

I've had my 2nd round of bloodwork completed on Jan 3rd for a full 2 months on meds and will actually be on meds for 3 months on January 14th....I'm extremely sure and will definitely not bet you about my CD4 and VL, because I'm know you are right and my CD4 will be high and VL undetectable! I'll see my doctor on Friday, the 12th and will have the results.

Chris

Offline alberche

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Re: Should I start...?
« Reply #42 on: January 09, 2007, 05:39:24 PM »
Hiya Chris!!!

Holidays were OK, great, but too short!!!!

Well, I went to make new labs yesterday, will have results and my next appointment with my doc by february 8th...

In the meantime, I went to make a new genotypical resistance test on november. Doctor just called me last week to tell me they couldn't reproduce any virus due to mi VL was undetectable and very low. So they will make a study using my own lymphocites. So, I am happy, good news at the moment.

Side effects: I am OK, no remarcable ones. Cholesterol, lipids, urea, glucose and so on are under normal ranges. I keep going to gym and taking care of my foods.

I've been under a big tension all these months, but it seems things are getting normalised -if we could say so- and I hope these next months I can take a big breath and think in deep of all that has happened to me since I got infected in march 2006.

These ten months have passed as if they were 10 years. In many ways I am a different person. I don't know if a better one or not, simply, I feel different. I still feel sad and worried, but I also feel capable. And every day's life kept going on and I could follow the pace. So I think, in a way, I am in peace.

Dear Chris, I hope your labs will be very good (I am sure). Let us know!!!!

Big hughs!!!!


love is blindness...  a wonderful song!

Offline gusguyny

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Re: Should I start...?
« Reply #43 on: January 12, 2007, 01:10:22 PM »
Alberche, you were right!!!!!!!! Just back from the doctor this afternoon. After two full months on meds my CD4 is 133 and my VL is undetectable
from my original pre-meds of CD4 of 32 and VL of 368,000.....glad we didn't make that bet!  :D

Chris


Offline alberche

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Re: Should I start...?
« Reply #44 on: January 19, 2007, 02:30:03 PM »
I am very happy for your results dear Chris!!!

That's really good news!!!

Fortunately we didn't bet any money, right now you would own me at least a good dinner or a couple of bears!!!!!

Cheers anyway!!! I am really glad for you!!!

Big big hughs!!!

love is blindness...  a wonderful song!

Offline AustinWesley

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Re: Should I start...?
« Reply #45 on: January 29, 2007, 05:36:36 PM »
Hey Guys,

I've intently read all through this thread and other similar ones.   I'm starting to get nervous about my numbers now.   

Here they are over the past 10 months or so:

Diag.  March 06  Infected probably 2/3 months prior.

627   VL 36,500   April/06
409   VL 36,000   Jun/ 06
408   VL 22,000   Aug/06
354   VL 28,000   Jan 18th 07

I'm definitely not happy with my current doctor for a variety of reasons.  I've got major fatigue and she seems to dismiss that as all in my head.   Most recently, I had some type of breakout and she suspected Staph.   Well, she did some test for it and never bothered to call me with the results.   Turns out I didn't have staph.   Still don't know what it was, but I've never had acne or any of that before.   Most of it's gone, but I have an itchy splotch behind my knee which I think was a bug bite or spider bite and now it's bout the size of a quarter.  I've been putting neosporin on it for now and giving it a few days.

I'm definitely getting a new doctor with a better staff.  One who picks up the phone would be nice ; )     My other HIV doctor was much more thorough but lot further away.   I'm going to try one other one first, but if I have the same issues I'll just make the drive to the first one.

So, the one thing both of my HIV docs agree on is niether recommend me taking anything yet.   I'm stressed out and wondering if I am waiting too long.   I know my numbers aren't terrible, but I also am certain the HIV is causing the fatigue and miscellaneous other issues. 

I ask a LOT of questions and this current doctor acts as if it's all my anxiety.   She wanted me to come back in May?   Well, of course I'm anxious watching my T Cells slowly dwindle down.    It makes me nervous when my doctors both say I can prescribe the drugs for you, but I wouldn't recommend it????????   What the Hell?   Both seem to feel I should wait till I'm around 300 or lower.

Now, one other problem was this doctor found out from my other doctor's records that I have an anxiety disorder.   However, I've taken the same damn med for it for 14 years and I probably have taken a few extra lately ; )   Anyways, once they see that prescription they automatically assume you are some nut case.   She went so far as to say she didn't want to prescribe Atripla because it causes anxiety and depression?   I told her I didn't care and would chance it.

I guess my current plan is to go to a 3rd doctor now and have her review everything and retest in another month or two, not four with my cd4 count at 354.

OK, so I think my story is fairly common and I'm hearing mixed answers all over the place.   Would love some sound advice??

Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline alberche

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Re: Should I start...?
« Reply #46 on: January 30, 2007, 06:01:36 PM »
Hiya Austin...

True, your CD4 seem to tend to go down slowly... so you are in the point about to be proposed to start with meds... if we look to the regular praxis guidelines.

But this is always controversial for all of us: some doctors will propose you meds when you are on 400's or even higher, and other will try wait-and-see until 300 or less. This depends on your progression and your general health condition.

If you tend to go down on CD4 quickly and your viral load goes up, then they could propose to start earlier. If they think you're stabilised -this could imply some ups and downs in your numbers but with a stable trend in time- , they'll propose you to wait. Maybe this last is your situation right now or, at least, this is what your doctors are seeing now.

I was proposed to start so earlier (3 months after being infected) because my infection was very recent and I got very clear the moment of my infection, but this is a very rare case.

Anyway, this a good idea to have a second opinion from another doctors. In any case, maybe you will be proposed soon to start with meds: in the following months. Talk frankly with your doctor about things that are worrying you.

If you feel OK now, you have no urge to start meds, so you have time enough to achieve information, get your main doubts solved,  and getting prepared for when the moment of taking meds arrives.

I agree with you a good communication with your doctor is fundamental. Just think that some docs would feel as worried and stressed as you, they're burnt out by bad job conditions or similars... just try to transmit to your doctor you are a cooperative person and will help him or her to teamwork... and, if even doing this your communication does not improve, just search for another doctor. That's all.

Hughs!!!

 :)


love is blindness...  a wonderful song!

Offline AustinWesley

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Re: Should I start...?
« Reply #47 on: January 30, 2007, 07:44:26 PM »
Thank you for your insight.   I'm great at handling everyone else's issues, but when it comes to my own forget it ;)   Uh, I wasn't even very articulate before.

You know one thing which occured to me is that at the free clinic here you can't get the ADAP assistance to pay for the drugs if you have CD4 counts above 350 according to the first doctor.

I presently have health insurance, but there's a possibility I could loose it so I've had a lot of stress over that.   I am planning to do whatever it takes to retain insurance.

I've had a lot of financial stress too.   Most of the people I've met who tested positive didn't own a home or didn't have any assets or insurance to begin with so I guess it wasn't as big of a worry to many of them. 

I guess I have a lot of anxiety that if I let things go too far then I stand to risk loosing everything.   To be honest the threat of financial ruin is right up there.   

You have given me a very intelligent and calm perspective. 

Thank you!

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline alberche

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Re: Should I start...?
« Reply #48 on: January 31, 2007, 05:44:37 PM »
Hiya again Austin!

Yes I know what you mean, that's a big problem in the states. Here in Europe is easier for us, and even though there are money concerns conditioning hospitals and healthcare policies, the truth is that in the end the kind of treatment you receive depends fundamentaly on your doctor's criteria.

All meds and tests are 100% free, but in contrast, doctors have not too much time to see you, only 5 to 10 minutes, and sometimes this doesn't help a lot.

Well, in your case I think it is understandable that you are stressed. Think that you have time and a manouvering margin to do things. The most important is that you feel calmed. There will no be big difference if you start now or in some months, no big difference if you are at 350 or at 280.

What is important is that you are with no anxiety and informed and prepared to properly take your meds.

Meds will do they work and soon you will be better and over 300, 400 and maybe more.

So, try to find a better doctor, set your priorities and go step by step. It works!!!

Hugs!!!!
love is blindness...  a wonderful song!

Offline AustinWesley

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Re: Should I start...?
« Reply #49 on: February 06, 2007, 02:15:27 AM »
Thank you for the advice!   I have made arrangements to change back to my prior doctor and have an apt. on Feb 9th.

And Paul sorry I interupted your thread.   It seems our numbers are quite similar still.

God, I'm like the worst thread hijacker ever ;)   LOL, at the comment you made early on about being forced to bed early and missing out.  That is so me!   

Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

 


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