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Author Topic: Reaching out for some potential answers, and frankly . . . some encouragement  (Read 1781 times)

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Offline YeahImPoz

  • Member
  • Posts: 4
I find that there's nothing in life more fulfilling to me than helping to uplift and encourage someone, and no better feeling than simply seeing their genuine appreciation.  So I don't know why its so hard for me to seek it out, but I am feeling so disheartened tonight.  I haven't posted much but my frequent reading of the forum made it clear this is where I should reach out.  Reading the posts and threads here has become an activity I enjoy, like anticipating updates to Phil's "Dayumm syphilis".  I think I'll have withdrawal if it ever ends - LOL.  And I literally wept awhile back reading the posts by many of you about Captain Karl when he passed away.  These were sentiments expressed by people I've never met about a man I never met.  But the love and the bond and the LOSS was so real and so familar having experienced such loss.  So while I feel like I am feeling more down than I should be tonight, I know most of you will understand.

I got my latest lab results today and I continue to have no increase in CD4 at all, some decrease in fact.  As background, I only discovered I was positive earlier this year but obviously have been poz for a number of years as my initial CD count was 77.  During all the time i had HIV but didn't know it and during the 4 months since I learned, I have never had a single symptom or illness related to my HIV that I know of.  I've never had thrush or night sweats or shingles or infections, maybe a low grade fever twice in the last 5 years.  Given my very low CD4 counts and percentage, I am fully aware how fortunate I am and am truly thankful.  

But I am so frustrated and confused as to why my body is not regenerating CD4 cells.  My labs are as follows:
 April -  VL: 40,000,  CD4:  77, 9%
 Started Atripla, Bactrim, weekly Azithromycin
 May -   VL:  3,600,  CD4:  78, 9%
 July -   VL:  33     ,  CD4:  58, 9%
 Today - VL:  UD   ,  CD4:  49,  7%

To reiterate, I have not been sick, I feel great, and I am delighted that my VL is now undetectable.  But I am baffled by the total non-movement of my T-cell count.  I like seeing so many folks post their great results on these forums and rejoice with them.  But it also creates great optimism and excitment about what my own results will be and . . . 49 . . . 7%.  

It hit me so hard, the fear that maybe I will never have a functioning immune system again, and the knowledge that it is inevitable that my great good fortune regarding serious HIV associated illnesses cannot continue unless I am able to reconstitue my immune system.  

My doctor only comments that there is often a lag between viral load decrease and CD4 increase, and I know this.  He also points out that CD4 recovery is not generally as robust for a 48 year old (me) as for a 28 year old.  And I know this.  But my result is below the norm significantly and I don't understand.  Is there a real possibility that I simply won't be able to achieve a meaningful increase?

It would help me greatly to know if any others experienced months of HAART treatment early on with virtually undetectable viral load and no sickness without ANY improvement in CD4 count or percentage.  As you can see, mine has gone slightly lower even.  And it would also help me greatly if i had some understanding of the potential underlying reasons for this (from a science/medicine/health perspective).  I know its complex and no way to know for sure, but I'm at a loss.  And feeling more disheartened than at any point  

« Last Edit: September 21, 2011, 08:40:32 PM by YeahImPoz »

Offline Raf

  • Member
  • Posts: 256
  • Bald by choice
I can only talk for myself, but I started with a count of 98 CD4 count (with a nice VL of 420.000) , and only after 6 or 8 months, my CD4 went over 200, and almost at the same time I went UD. I have to remark that, I was battling at the same time with a full blown aids Dx back then, with a nice Molluscum contagious OI and trying to recover weight after months od diarrhea.

Don't be discouraged, I asked my doc about this once, and he told me that for many people is hard to increment their CD4 counts. Every people reacts to the treatment differently, just give yourself more time, at least you are UD, and it's something to celebrate man.
Dx: 05/14/2008
Latest HIV Meds combo I've been taking:

Kaletra + Combivir (since 05/16/2008 - today)

Offline phildinftlaudy

  • Member
  • Posts: 2,965
  • sweet Ann what you think babe...
Hey Yeah -
Welcome to the forums and thank you for posting.
I can definitely understand your frustration about your CD4s not going up so far.  But the key words there are "so far."  

I'm sure others will also chime in with some suggetions and support.  I'm sure you will find other members here who have had similar experiences.

When are your next labs?  I'm gonna send some increase in cd4s your way.

As far as the Dayuuummm Syphilis thread (lol) --- I hate to disappoint you, but hopefully, I will be wrapping it up pretty soon --- sorry, I'm sure you understand (LOL)

Don't fret though --- my life is usually so crazy and I make some unusual decisions - so,  I'm sure it won't take too long for me to have some other thread going about some saga in my life --- and if not me, someone else will ---- we may have HIV - but we still are living - and with that will come some funny, sad, frustrating and other threads.

Once again, welcome --- and I look forward to hearing more from you and reading some of the responses to your post.

-Phil
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline sam66

  • Member
  • Posts: 277
  • Keep The Faith ; Fight The Fight

 Yeah
        good thing about ur no's is you are UD. So the meds are working,  after only 5 months or so on meds I would not worry about other no's.

 give it time, all the best

   
december 2007 diagnosed +ve ,

Offline SoSadTooBad

  • Member
  • Posts: 248
I started with a CD4 of 78 - it took over a year to go up to 175, and then it took another two years to get to 300.  I was 37 when I was diagnosed, and like you YeahImPoz, I did not have any OIs.

Honestly, the undetectable thing is the hard part - and you have that nailed.  It will take time, and you need to be religious about taking your Bactrim and Azithromycin, along with your HIV meds. 

Hang in there - things will go in the right direction - they already have, your VL is looking GREAT.


Offline kellybryana

  • Member
  • Posts: 96
I can only talk for myself, but I started with a count of 98 CD4 count (with a nice VL of 420.000) , and only after 6 or 8 months, my CD4 went over 200, and almost at the same time I went UD. I have to remark that, I was battling at the same time with a full blown aids Dx back then, with a nice Molluscum contagious OI and trying to recover weight after months od diarrhea

I had molluscum contagiosum and my CD4 has never dropped below 400...does that mean I had an OI? I'm confused

Offline Raf

  • Member
  • Posts: 256
  • Bald by choice
I had molluscum contagiosum and my CD4 has never dropped below 400...does that mean I had an OI? I'm confused

Well, my doc said that effectively it is an OI... and the timing, at least in my case, was just when my CD4 were under 100 by the time of my Dx.

It's even listed on the OI list here on the aidsmeds lessons..but it also says that even one adut with a good inmune system might get this infection. Maybe that was your case.
Dx: 05/14/2008
Latest HIV Meds combo I've been taking:

Kaletra + Combivir (since 05/16/2008 - today)

Offline spacebarsux

  • Member
  • Posts: 1,350
  • Survival of the Fittest
Hi YeahImPoz,

I can see how your non-existent/slow rise in CD4s (so far) can be a real dampner on spirits but the good news is that your VL is undetectable and you've not been on meds very long.

Here is a link on the i-base website to a situation similar to yours:- http://i-base.info/qa/3287

It is stated that some people can take over a year on treatment before their CD4 count starts to increase. Although your CD4 count has decreased the difference is very slight and could be seen as remaining stable.

The fact that you feel healthy and that the treatment is effective is the most important part. And I am certain in due course your numbers will look up too.

Best and Hugs.



« Last Edit: September 22, 2011, 02:34:54 AM by spacebarsux »
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline sfpvguy41

  • Member
  • Posts: 115
I completely understand your fear, and agree with the other folks that getting undetectable so fast is a great first step and you should see improvement soon.  Your body took a while to get to this point and will take a while to recover, so be sure to do everything you can to be good to yourself for a good long time.  Ask your Doc for advice on diet, nutrition, excercise and supplements. 

But other than to suggest a second opinion from another Doc who has lots of experience with HIV patients can never hurt, I will simply say that you're not alone, we're cheering for you, and be sure to post your updates so we know how it's going for you.   Perhaps you can find and HIV support group in your area? A hug can go a long way...

I wish for the very best for you.  Stay positive, it sounds like you are!

Here's a virtual hug.

(----------------------------------)!!
:)
Labs: (undetectable since 2005)
12/13: 634 cdr, 37.3%, 758 cd8, total chol 183, triglycerides 131
8/13: changed to Edurant from Reyataz
12/12: 828 cd4, 34.5%, 1078 cd8, total chol 192, tri 196
12/11: 787 cd4, 37%, 979 cd8.
9/11: 758 cd4, 38%, 944 cd8, und.
8/11 dropped norvir, incr reyataz to 400 mg
6/11: 621 CD4 CD4% 41, CD8 680! Undetectable. Creatinine and eGFR are ok now.
Switched from Truvada to Epzicom in late April 2011
AGT/AST and creatinine back to normal mid-April.
Cut Norvir from regimen.
Switched back to Reyataz/Norvir late Feb 2011
2/11: CD4 664 34%, CD8 963, diagnosed with osteoporosis, high AGT/AST and creatinine.
12/10: CD4: 676 CD4%: 34 CD8: 1012
Switched from Reyataz/norvir to Isentress 10/10
8/10: CD4: 731 CD4%: 40 CD8: 866
Diagnosed Sept. 2002 started meds May 2005.

Offline GusInJune

  • Member
  • Posts: 32
You are doing everything you can and you will be okay! Take your meds and stay away from germs.  Most of all, keep your head up!
10/19/09 - Diagnosed +
6/28/11-Hospitalized 16 days Neurosyphillis, thrush CD4-70 8% VL >500k + Certfraxione, Bactrim DS
8/23/11 - Started Atripla
9/14/11 - CD4 340 18% VL 2980
9/27/11 - Eye surgery

 


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