POZ Community Forums
Main Forums => Living With HIV => Topic started by: LikeaRock on March 12, 2010, 02:18:27 pm
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Hey guys, as always thank you for your responses. I wanted to track some peoples CD4 stats on here who have been able to "break the barrier" of the common prognosis that "once you fall below <100 CD4 or were <100 CD4 at the time of diagnosis, that statistically, you will hover around 200-450 CD4 the rest of your life.
How many of you out there that have had an aids diagnosis at one point in time, are >500 CD4? I'm 6 months into my meds, diagnosed in Oct with PCP and CD4 of 44. Hoping to "break the barriers".
Please share your results, and how long it took you to get there. If your numbers are listed in your sig, thats fine too!
Thanks so much guys! I just want to know there is hope- I know everyone is different, but I SOOOOO want to get above 500- even if the difference between 400-500 is minimal in nature.
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btw, my personal counts now as of Feb 1st are CD4 185 VL undetectable. Med- Atripla. Sure I'm over 200 now, but no labs scheduled until April.
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My CD4 count was <100 1993 - first half of 1996 (when I started a protease inhibitor).
Lowest count was 18 (2%), June 1996.
Most recent counts have been
644 (29%) Dec 2009
512 (28%) Jan 2010
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Lisa, have I shown you my box of shattered dreams? It's upstairs in my disappointment closet.
--Marge Simpson
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Hi,
I have no idea, what my CD 4 count was, when I was diagnosed positive in 1985. What I do know, in 1999, My CD4 count was in the mid 900 range.
Between 1999 and 2003 My tcells dropped to 16, and I was officially diagnosed with aids. I was never on any treatment prior to October of 2003.
These are my numbers since that time ( 2003)
Starting from 10/2003 to 12/02/09, :
10/15/03 --CD4 ---16 (started meds)
12/3/03----CD4----48
1/7/04-----CD4-----76
2/18/04---CD4-----87
3/31/04---CD4-----125
5/17/04---CD4-----139
6/28/04---CD4-----150
8/30/04---CD4----199
11/08/04-CD4----253
2/7/05----CD4----239
5/16/05---CD4---213
8/16/05---CD4---333
11/15/05--CD4--328
2/14/06---CD4---279
5/16/06---CD4--350
7/12/06---CD4--322
10/11/06--CD4---286
1/11/07---CD4---332
4/19/07---CD4---380
8/15/07---CD4---366
11/05/07---CD4---295
1/14/08---CD4---303
4/21/08--CD4---379
7/22/08--CD4---327
10/13/08--CD4--323
1/15/09--CD4---331
4/14/09--CD4---295
7/14/09---CD4---352
10/19/09--CD4----355
12/02/09--cd4----392
I've had blood test taken on February 22nd,09, those results will be discussed on March 29. Still not sure what those results are yet. They haven'y called me, so I figure no news is good news. We'll See !
Ray
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I tested positive in 1985. My CD4 count ranged between 850 - 600 through 1999. I developed PCP, AIDS Wasting, Thrush in 2007 with a CD4 of 54. Started Lexiva, Epzicom and Norvir December 2007.
Now undetectable VL with CD4 of 350ish.
Cheers,
Boomer
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JRE:
This is TRULY an interesting case you have. I mean- you went 14 years with those high of CD4's, (which would have left me to believe your a short term progressor) then, in those last 3 years, you lost 80% of your CD4? Holy shit, that was like the virus replicating 5x as fast to catch up to all the years your own immune system apparantly suppresed the replication and left you with such high numbers.
Thank you for your sharing and good luck on your March results!
Boomer: I'm curious... if your CD4 was tracked through '99- and you knew your counts, why have waited until you dipped so low and developed the OI's in 07 to start HAART?
Based on all your guys counts, I think the historical studies may be accurate and that I too, will probaly hover around your guys highest counts at this point. Based on my numbers at the time of diagnosis in Oct 09- I probably have been poz for maybe 7 years- although I never knew what my CD4 numbers were when I was neg. My best to all of you. I hope 20 years from now I'm as strong as you all have been. HIV isn't what really scares me- its the lipo, wasting, ect that can be associated with it- and I have a hard time believing my doc when he says "Oh your not gonna ever waste, or get Lipo- thats from the HIV meds of the 80 and early 90's, or people that smoke meth). ???
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Ray, also- what OI's have you had if any at all?
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though you're really not supposed to be posting in the LTS forum ;),
I've known I was poz since 92. In all those years, I've only had a cd4 count over 300 two times (305, 311); but I also haven't been back into the hospital for over 11 years either. Sure it'd be great to have a higher amount of tcells; but having tcells that do the job is much more important. Quality not quantity is what you want to hope for.
plus there's all those other pesky issues like what was your baseline cd4 count before you were infected so you even know what is your average; that tcells amounts vary throughout the day (i believe 10am is the lowest and 10pm the highest or something really close to that); or that there's really no miracle treatment, med or supplement that will increase the cd4s; or that you can still get sick with some things (like hiv-related cancers) at an above 350 count.
Personally, if I were you, I wouldn't bother worrying too much about "breaking a nonexistent barrier". There's no barrier, just the fact that an immune system that severely damaged usually doesn't recover well. Break a leg and it might not set right. Have your car get wrecked and it might not ever drive quite the same again. Nothing's ever as good, once it's broken. ;) I have hit lows of 5, 12, 69, 45 (the 5 was in the hospital with PCP), so I don't expect my tcells to ever recover to any great amount. But I eat right, exercise, quit smoking, and am very thankful my 242 current tcells are doing the job so well.
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though you're really not supposed to be posting in the LTS forum ;),
The moderators are most likely going to move this thread to another forum. As Mike stated, your really not supposed to post in this forum, and i just realised you were diagnosed in 09.
But to answer your question, I had Esophageal Candidiasis around July of 03, also went through wasting, throughout 2003 and lost 30 plus pounds in 10 months, also developed bacterial pneumonia.Also had shingles.
Ray
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LaR,
I've moved your thread into the Living forum as you should not be posting in the LTS forum.
There are Welcome threads at the top of some main sub-forum pages. You should read them before posting. Thank you for your cooperation.
Ann
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JRE:
Boomer: I'm curious... if your CD4 was tracked through '99- and you knew your counts, why have waited until you dipped so low and developed the OI's in 07 to start HAART?
Rock,
For a variety of reasons I stopped medical care and lab work in 2000. I fell into a major case of denial until I developed OI's and was hospitalized for eight days in late 2007.
I agree with leatherman, It's not about quantity but quality. Achieving and maintaining an undetectable viral load is job #1 in my opinion. The rest is a matter of each individual, attitude / emotional health, diet, exercise, medications, sleep, stress, support etc.
Good luck to you and all here,
Boomer
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I tested positive in 1985. My CD4 count ranged between 850 - 600 through 1999. I developed PCP, AIDS Wasting, Thrush in 2007 with a CD4 of 54. Started Lexiva, Epzicom and Norvir December 2007.
Now undetectable VL with CD4 of 350ish.
Cheers,
Boomer
It's stories like this (and Rodney's, amongst others) that make me nervous about my long-term slow-progressor status. My clinic asked me if I'd like to attend every four months instead of every three and I declined. Although it would be nice to have to get up at the crack of dawn to get to the airport on time less often, I wouldn't want to wait that long to make sure my numbers are still good. From what I've seen, it seems that when LTSP's numbers crash, they do so quickly and in spectacular fashion.
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It's stories like this (and Rodney's, amongst others) that make me nervous about my long-term slow-progressor status. My clinic asked me if I'd like to attend every four months instead of every three and I declined. Although it would be nice to have to get up at the crack of dawn to get to the airport on time less often, I wouldn't want to wait that long to make sure my numbers are still good. From what I've seen, it seems that when LTSP's numbers crash, they do so quickly and in spectacular fashion.
Ann,
You have a priceless advantage over and above many of us (almost) LTNPs past and present. It appears many, although I speak only for myself, fell into a false sense of security as years went by. One must keep in mind that an often common fact is that these diagnosis took place in the mid to late eighties when HIV was a sure death sentence. So in the early 90's when my doctor uttered the words "there is a chance you are a LTNP" I heard YOU ARE A LTNP!
So your priceless advantage is the knowledge and experience of time AND the good sense to keep on top of your labs.
What is the longest LTNP recorded on "the books"?
Wishing you all the best,
Boomer
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I'm not a LTS as I was infected in 2005 however, my numbers have bounced around quite a bit. When I was diagnosed my Cd4's were 426 Vl 50,000. I played the waiting game on the meds and really got myself hung up on some personal issues I was having at the time. Suddenly in Sept 2006, after not being to the doctor in well over 6 months, I started having extreme fatigue and weight loss. I was shocked to find that my numbers had plummented to 103. Looking back I shouldn't have been surprised I was under an extreme amount of stress.
I was immediately put on Atripla and after a month my Cd4's was 334. They got as high as 500+, then I did something terribly ill informed. I switched meds, under the advice of my doctor due to issues with the Atripla. Not taking things seriously put me in the hospital in July of 2008 with my numbers again below 200.
Went back on Atripla and my numbers have now routinely ranged in the 1000-1300 range. I've since switched meds again and have not had any labs done yet other than a liver function test.
I don't know how my numbers get so high. While I don't put anything necessarily bad into my body, I really don't eat when I am suppose to and I don't sleep like I should.... it must be all the coffee and cigarettes. ;)
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I don't know how my numbers get so high. While I don't put anything necessarily bad into my body, I really don't eat when I am suppose to and I don't sleep like I should.... it must be all the coffee and cigarettes. ;)
Skeebo,
I miss coffee AND cigarettes.
Boomer
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I'm not considered a LTS here. I was likely infected '88 - '90 during a period in which I was using IV drugs. I've been married (and faithful) since 98 and drug free since 90.
I was diagnosed in 2004, VL >500,000, CD4 <50. My OI was Burkitts Lymphoma.
I was put on meds immediately. CD4 has increased every time with one exception where I dipped by 15%, a statistical anomaly most likely.
3 months ago I was at 680 CD4 with VL <75 in 6 years I've missed exactly 2 doses of meds. 1 of those was caught the following morning, I took my atripla then and went off to work. Had a rough morning as my concentration was very poor.
Still waiting for last weeks results.
Exercise and diet change have had some positive effect on my numbers and a profound effect on my strength and energy level.
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I was diagnosed with AIDS and had several opportunistic infections. Here are my numbers (yearly averages):
Year CD4 Viral load
1993 570 over 500,000
1994 255 over 500,000
1995 308 over 500,000
1996 175 68,720
1997 224 4,109
1998 117 8,524
1999 90 11,476
2000 130 21,106
2001 116 12,253
2002 87 69,699
2003 369 <400
2004 512 <400
2005 688 <400
2006 577 <400
2007 742 <50
2008 820 <50
2009 683 <50
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I just miss LTS status by 3 years. I was diagnosed in '99. My tcells were 52 last labs. I'm not on meds, so I don't expect my CD4's to be any higher than they were in Feb. ::)
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I just miss LTS status by 3 years. I was diagnosed in '99. My tcells were 52 last labs. I'm not on meds, so I don't expect my CD4's to be any higher than they were in Feb. ::)
Just curious, if you get PCP will you go on meds?
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Thanks so much guys! I just want to know there is hope- I know everyone is different,
Yes! I am very different, and my numbers won't change your life to someone who gives a shit, so I aint sharing.
Why do you guys all bite and spend far too much time giving people like this, who are monitoring a thread in absentia? Waste of fucking time.
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Moffie, I don't understand your objection to someone asking us to post our CD4 count over time.
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Moffie, I don't understand your objection to someone asking us to post our CD4 count over time.
Because Ford, my numbers aren't indicitive of anyone elses, since HIV is pretty much a personal thing to every "body", and the way a person lives, their level of depression, thier adherance, their amount of sleep, their work stress, their daily stress, how resistant their virus is, how the meds work in their body; all effect the numbers, so how mine do is no indication of how yours or anyone elses will do. Simple science my friend.
This thread was authored to get some semblance of peace for someone who is newly infected and is looking for the LTS's numbers to give some hope. He said it in the first post. My numbers couldn't give anyone hope, because of the reasons above.
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Ann,
You have a priceless advantage over and above many of us (almost) LTNPs past and present. It appears many, although I speak only for myself, fell into a false sense of security as years went by. One must keep in mind that an often common fact is that these diagnosis took place in the mid to late eighties when HIV was a sure death sentence. So in the early 90's when my doctor uttered the words "there is a chance you are a LTNP" I heard YOU ARE A LTNP!
So your priceless advantage is the knowledge and experience of time AND the good sense to keep on top of your labs.
What is the longest LTNP recorded on "the books"?
Wishing you all the best,
Boomer
My doctor, until last November, always called me a long-term SLOW-progressor, not a LTNP. He decided last November that he now considers me a NON-progressor, but I am wary of agreeing with him and I refuse to become complacent. I've just known too many who had great numbers for years, but when they went south, they did so in a matter of months.
I'm not sure if anyone knows who might be on record as the longest surviving LTNP. They might know over at the Zephyr Foundation (http://www.zephyrfoundation.org/).
Why do you guys all bite and spend far too much time giving people like this, who are monitoring a thread in absentia? Waste of fucking time.
This thread was authored to get some semblance of peace for someone who is newly infected and is looking for the LTS's numbers to give some hope. He said it in the first post. My numbers couldn't give anyone hope, because of the reasons above.
I have to disagree that it is a waste of time to post number histories. For one thing, I would probably be more inclined to ignore my hiv, given my LTSP status, if I didn't know about the numbers of some other LTSP who had their numbers suddenly crash and crash quickly.
Number histories which show bad numbers pre-meds and steadily improving good numbers after initiation of ART serve to prove the effectiveness of ART and provide encouragement to others. What's the harm in that?
Ann
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Because Ann, my numbers aren't indicitive of anyone elses, since HIV is pretty much a personal thing to every "body", and the way a person lives, their level of depression, thier adherance, their amount of sleep, their work stress, their daily stress, how resistant their virus is, how the meds work in their body; all effect the numbers, so how mine do is no indication of how yours or anyone elses will do. Simple science my friend.
When I was diagnosed Ann, I wouldn't have had any way to know what my numbers were, or for about 9 years thereafter. So, as a "LONG TERM SURVIVOR" that predates the question, plus my progression to AIDS, and my recovery from a CD4 of 20 in 1993, wouldn't help anyone, as my immune response was destroyed long before therapy........................Why would I submit to the inquisition?
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Although I don't really count in this thread (I'm not a LTS and never will be), my numbers are posted for the world to see. When I was newly diagnosed, it helped me to see how others have traveled on their journey with HIV / AIDS. To see the changes when they went on and off meds, or changed regimens, was useful. I knew I wouldn't have the exact same numbers, trends, progression, etc, but often, seeing the variations in different people's numbers helped show me the range of experiences.
I post my numbers for any benefit that somebody may get from them. It also helps to remind me what my lab results were at any given time.
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Hi LikeaRock
I'm a "short term" survivor myself, but have similar or worse starting numbers as yours. I'm about 3 years ahead of you though. But I made it up above 500 and am closing in on a normal percent too. The full history is posted below (same rationale as David-NC).
Be well
A
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Why would I submit to the inquisition?
Simple. Don't respond to the thread.
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Simple. Don't respond to the thread.
Cool, and considering how the last thread I authored went, I think I'll just re-lock my keyboard when I read this site. Who the fuck listens to us Dinosaurs any more anyway? Surely all of our experience with HIV/AIDS and our intensive study of the science as it evolved doesn't mean jack shit anymore, considering we are now locked firmly in the age of CMHIV. AIDS is certainly history.
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Tim, let me explain in a little more depth what I meant.
Because Ford, my numbers aren't indicitive of anyone elses, since HIV is pretty much a personal thing to every "body", and the way a person lives, their level of depression, thier adherance, their amount of sleep, their work stress, their daily stress, how resistant their virus is, how the meds work in their body; all effect the numbers, so how mine do is no indication of how yours or anyone elses will do. Simple science my friend.
This thread was authored to get some semblance of peace for someone who is newly infected and is looking for the LTS's numbers to give some hope. He said it in the first post. My numbers couldn't give anyone hope, because of the reasons above.
Tim, I think we're in total agreement that when it comes to hiv, everybody's experiences will be a bit different. I think that's true of just about any illness there out there. However, there are common denominators. While your specific numbers aren't going to be indicative of anyone else's, the fact that your numbers improved when on meds IS indicative of what's going to happen with others. We are in agreement that the meds work, aren't we?
The OP is simply looking for a bit of reassurance that with time and today's improved meds, he's going to be ok. For goodness sake Tim, you're a good example of that and it doesn't really matter what your numbers were in the early days. You know your numbers from at least the past ten years and that counts for something. The fact you're still here counts for something.
When I was diagnosed Ann, I wouldn't have had any way to know what my numbers were, or for about 9 years thereafter. So, as a "LONG TERM SURVIVOR" that predates the question, plus my progression to AIDS, and my recovery from a CD4 of 20 in 1993, wouldn't help anyone, as my immune response was destroyed long before therapy........................Why would I submit to the inquisition?
While the OP might be somewhat recently diagnosed, with the numbers he had at diagnosis (CD4 44 VL over 700K) he certainly isn't newly infected. He also had a damaged immune system before therapy. This is precisely why he is asking for the experiences of people who have been living with hiv inside their body for a long time.
Yes! I am very different, and my numbers won't change your life to someone who gives a shit, so I aint sharing.
Why do you guys all bite and spend far too much time giving people like this, who are monitoring a thread in absentia? Waste of fucking time.
I really don't understand the hostility in the above response. It's obvious by some of the replies here that many people do take encouragement and reassurance from reading about the experiences of others and seeing their number histories. So while you might think this thread is a "waste of fucking time" (charming), others do not share your opinion.
Cool, and considering how the last thread I authored went, I think I'll just re-lock my keyboard when I read this site. Who the fuck listens to us Dinosaurs any more anyway? Surely all of our experience with HIV/AIDS and our intensive study of the science as it evolved doesn't mean jack shit anymore, considering we are now locked firmly in the age of CMHIV. AIDS is certainly history.
I'm a bit perplexed that you say nobody listens to "us dinosaurs" on one hand, then on the other hand complain when someone asks about your experiences and numbers.
Don't pack up your keyboard and leave. That is not what I meant at all when I said "don't respond". I simply meant that if you have no interest in a thread or think the question is a waste of time, you don't have to respond in a hostile manner, just move on to another thread.
And to state that "aids is history" is just plain silly. While for many it IS a manageable condition, I think we're all very much aware that "manageable" is totally dependant on access to meds and healthcare. Just because some of us are optimistic about the future of our health and our lives with hiv does NOT mean that anyone is discounting the bad experiences others have had or are having currently. And just because we're optomistic doesn't mean we aren't aware that the wheels could fall off the cart at any time for any one of us.
Ann
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Diagnosed in 1987.
Lowest count was early 1996 with 7 T-cells and a viral load in the millions.
Started HAART and have been up to 950 and 34% and undetectable ever since.
But numbers are only numbers.
My last T count was 540. It fluctuates all the time.
It is about how you feel and of course, the aim is to get undetectable.
Keep going...
xxx Hermie
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Please share your results, and how long it took you to get there. If your numbers are listed in your sig, thats fine too!
My experience doesn't exactly match your request of CD4 <100 but it does include a lengthy time period between initial diagnosis and the start of treatment. Hope you find this info useful.
I learned about my infection in 2002 (story here) (http://forums.poz.com/index.php?topic=20742.msg266221#msg266221). I pretty much ignored it for a long time (which I now realize was a stupid thing to do). In September 2007 I came down with a fever during a flight from Beijing to Singapore. That didn't really worry me so much until I noticed my temperature remained elevated for several days. The fever just wouldn't go away -- it persisted for many weeks. In October I went through a battery of tests that revealed nothing serious. Finally I relented and and requested an HIV test in November -- where I learned that my CD4 was around 250 and my VL was over 1,000,000. My doctor recommended a well-respected specialist who suggested I start meds right away. I'm very pleased with the results: CD4 over 600 and VL undetectable.
We never did figure out what the cause of the fever was. The only thing of note from October's round of tests was a mildly elevated liver function (I don't recall which specific test) with no obvious cause. My fever disappeared after the first week of meds and my liver functions returned normal and remain there.
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It's stories like this (and Rodney's, amongst others) that make me nervous about my long-term slow-progressor status. My clinic asked me if I'd like to attend every four months instead of every three and I declined. Although it would be nice to have to get up at the crack of dawn to get to the airport on time less often, I wouldn't want to wait that long to make sure my numbers are still good. From what I've seen, it seems that when LTSP's numbers crash, they do so quickly and in spectacular fashion.
Hey Ann,
You said a mouthful! I went 11 years without meds. OK, for some of those years, there weren't any and for others, there was only monotherapy.
But, my T cells stayed above the magic 500 during those entire 11 years, or at least as long as I monitored them.
But when things went down the toilet, they went fast. In September 05 my CD4s were in the 600 range and my viral load was about 12,000.
Then, my CD4s steadily dropped into the 400s without any rebound and the viral load shot up to nearly 50,000 by January.
I started meds in March of 96 and the rest is history.
I was lucky, but if I hadn't been monitoring my counts, things could have gone sour very easily.
I agree with you Ann. If I weren't on meds, I would have those draws done quarterly at the very least.
HUGS
Mark
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I was lucky, but if I hadn't been monitoring my counts, things could have gone sour very easily.
Absolutely. And if I didn't know about stories like yours, I would probably be inclined to be a lot more complacent about monitoring my numbers. While it's true that hiv affects everyone a little differently, there are still many common threads. Sharing our stories and number histories really does help others.
One of the first people I knew with hiv works at the ASO I use in Liverpool. When we met, he had been med-free and very healthy for ten years and that gave me so much hope at a time when I needed it most. He's another person who had his numbers crash quickly and spectacularly (at year twelve). He went on meds and is doing great - which also gave me much hope.
Sharing our stories gives hope, and that's priceless.
Hugs back at ya!
Ann
xxx