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Author Topic: Zach's Thread  (Read 85582 times)

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Offline zach

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Zach's Thread
« on: April 14, 2014, 10:17:12 am »
on a certain level this is just me freaking out, and some cracks showing in my brave face (cheaply painted on, don't let me fool ya)

has anyone here ever experienced myelitis? and more specifically, recovered from it?

it is pretty alarming how quickly this went from a mild numbness a few weeks before hospital, to now seriously affecting my ability to walk. doctors hope that as i recover, the lesions on my spine causing this condition will also heal. i try to remain optimistic, mostly because i deeply believe that positive thoughts are healing

i think i just need to hear that someone has gone through this, and come out the other side.
« Last Edit: May 13, 2015, 12:39:25 am by Joe K »

Offline Jeff G

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Re: myelitis anyone
« Reply #1 on: April 14, 2014, 10:28:56 am »
Check this out . I had it bookmarked because I have a condition that mimics TM and have researched it before . Hopkins is a source you might find helpful for other conditions related to the complications we suffer due to HIV, they provide very accurate information . 

http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/transverse_myelitis/about-tm/index.html
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Offline zach

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Re: myelitis anyone
« Reply #2 on: April 14, 2014, 05:11:10 pm »
thanks jeff... as scary as alot of what i'm learning about it is, there is still much to be optimistic about. i may walk hobbled for awhile, but all research seems to indicate that it will improve and thats reassuring at least

Offline Jeff G

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Re: myelitis anyone
« Reply #3 on: April 14, 2014, 05:25:44 pm »
With your good attitude you will do very well living with HIV . It takes the ability to be honest with yourself to be successful at living with HIV and that means doing the work on what you can change and gracefully accepting what you can not, and I know you have what it takes .

One of the hardest things people have trouble wrapping their mind around about living with HIV is that it changes your life in such a way as that taking care of your health is job number one and once you get that taken care of you have a solid base to go on from there .

My years poz has taught me that the complications we face like nerve damage do not have a prognosis that is set in stone ... which means if a doctor or your body is telling right you might hobble the rest of your life you could be running next month and surprise them all including yourself  .   
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Offline mikeyb39

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Re: myelitis anyone
« Reply #4 on: April 14, 2014, 06:02:18 pm »
Yes Jeff is right, a lot of these neurological problems doctors don't or can't do much about them.  When I was having numbness in my feet, hand, arms. Burning like hell at times. No one ever wanted to say the N word (neuropathy), yet they put me thru numerous expensive tests and still come up with only a plausible diagnosis which was small nerve fibre , probably due to sustiva

Luckily changing meds helped out a lot. It's really a bummer to hear a doctor say there isn't much they can do with neuropathic issues except throwing a ton of pain pills your way
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD
09/05/2014 switched meds isentress, prezcobix -still only two antivirals
10/14/2015  cd4-600 , VL-UD

Offline zach

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Re: myelitis anyone
« Reply #5 on: April 14, 2014, 06:18:12 pm »
i wouldnt have turned down the pain pills  :D

Offline zach

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Re: myelitis anyone
« Reply #6 on: April 14, 2014, 07:06:08 pm »
i'm always pretty hesitant to ask for pain or sleeping meds... i don't like being treated like the drug addict i was. i know thats a thing i should get over, but it is what it is. i don't drug seek. its not really pain, and maybe it was a mistake to say that to the Dr's. its a numb, buzzy feeling

Offline zach

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Re: myelitis anyone
« Reply #7 on: May 29, 2014, 10:59:30 pm »
i'm gonna keep my leg/nerve/myelitis issues in this thread, hope nobody minds

so a couple weeks ago my feet swelled really bad, lasted a little longer than i was comfortable with. the swelling has gone down, but now the skin is wrecked and peeling. been keeping them clean and lotioned. hope nothing bad comes of this.

and a big lesson i learned in the hospital

i'm never consenting to a freehand lumbar puncture again, much less a series of six in a row

Offline Tony123

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Re: myelitis anyone
« Reply #8 on: May 30, 2014, 01:03:16 am »
Hey Zach. I cam across this thread of yours. I am interested to find out more. I will also go onto Jeff link and read up more. I started taking Atripla about 3 months ago. About a week and a bit ago I started getting a burning like pain in the left thigh which then spread down the leg and buttocks and round the lower back and stomach and a little bit down the left leg. Went to GP who thought it could be some sort of muscular pain. Yesterday decided to go to casualty and get proper checks. They have taken bloods, x-ray's and urine. All have back fine - except they are waiting for ESR blood results which apparently tests for inflammations etc. Anyway, they gave a quarterzone injection and the pain has subsided a bit but still there - probably still too early to tell if working or not. My concern is that it could be a reaction to the meds. Kidneys seem fine so not that. Now that I have seen your thread, I am thinking it could be something similar - although can this happen so soon after starting meds? The pain is like a burning pain just under the skin - I have had no rashes or bumps or swelling.

Offline zach

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Re: myelitis anyone
« Reply #9 on: May 30, 2014, 01:27:14 am »
anyone else stumbling on this, also check out the transverse myelitis association website

http://myelitis.org/symptoms-conditions/transverse-myelitis/

i've always found if i want to know something, go to the people affected

diagnosis of myelitis will be confirmed with a lumbar puncture to draw spinal fluid.

this is necessary. but i can tell you from experience. if they want to do the tap freehand, give them one chance and then insist on doing it under a scope.

lumbar needle is heavy gauge (looked like an 8d nail, not a needle). each attempt started with 5 local numbing injections. then the fun begins.

i went through five attempts before being put under the scope. six total with the large needle. 30 numbing injections, with the doctor massaging the drug around.

the entire process hurt like hell.... and i can still feel it, nearly two months later

i regret not knowing about the scope (some type of xray) and not insisting on it initially. having now gone through it, i don't know if i will ever again consent to one again

edited to add: the gabapentin (neurontin) prescribed to me, is completely useless, some report relief from this drug... i do not
« Last Edit: May 30, 2014, 01:29:37 am by zach »

Offline Tony123

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Re: myelitis anyone
« Reply #10 on: May 30, 2014, 01:36:15 am »
Thanks Zach.
I will ask doc about this. I have had two lumbar punctures in the past when I had meningitis - first one was fine because I had so much pain with my head - didn't feel the lumbar punch that much - the second one hurt a bit.
Lets hope I don't have to do this, but better to find out what it is and get sorted, so no pain no gain.

Offline zach

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Re: myelitis anyone
« Reply #11 on: May 30, 2014, 01:42:47 am »
my entire spine is tattooed, it hurt worse than than the punctures

the pain only hurts, i sat still, so can you

i also had a japanese nurse that could read my back, something i didn't want done (its a very painful prayer, for my son that passed away) at the time. she just started translating, choked me up and i almost started to cry... had to tell her to shut up just to be able to make it through mentally

good luck on getting your situation diagnosed and treated whatever it turns out to be. don't delay

quoted from the TM website
Neurologic function tends to decline during the 4-21 day acute phase, while eighty-percent of cases reach their maximal deficit within 10 days of symptom onset. At its worst point, 50% of individuals have lost all movements of their legs, 80-94% experience numbness, paresthesias or banding or girdling, and almost all have some degree of bladder dysfunction.

Offline zach

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Re: myelitis anyone
« Reply #12 on: June 05, 2014, 05:17:46 pm »
take it where you can get it, i feel damn good today as far as my legs go... i'm not dancing, but i'm at least walking without a cane for a day

lab tomorrow, two months out of hospital... fingers crossed for good labs and such. should i ask again for some mild narcotics?  ::)

almost almost feel like i can see the other side of the past few months

Offline zach

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Re: myelitis anyone
« Reply #13 on: June 14, 2014, 07:52:45 pm »
henry, or anyone else thats been through lumbar punctures

how long can i feel it?

did some heavier work in the garden i've been delaying since hospital. i swear i can feel those nails driving into by spine

gabapentin my ass, give that to me like a consolation prize, shit does nothing anyway, but they hold my arvs in one hand, tell me you can't release them, wave bye with the other hand.... and the mudder fkrs smiled

monday, i'm raising hell in there

Offline Buckmark

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Re: myelitis anyone
« Reply #14 on: June 14, 2014, 09:02:47 pm »
henry, or anyone else thats been through lumbar punctures

how long can i feel it?

did some heavier work in the garden i've been delaying since hospital. i swear i can feel those nails driving into by spine

As the proud recipient of 7 lumbar punctures, for me the only lingering pain was a dull ache for maybe 2 to 3 weeks afterward.  Nothing I would describe as sharp or driving.  So I suspect your pain may be from something else. 

Quote
gabapentin my ass, give that to me like a consolation prize, shit does nothing anyway, but they hold my arvs in one hand, tell me you can't release them, wave bye with the other hand.... and the mudder fkrs smiled

monday, i'm raising hell in there

Gabapentin blows.  I'm currently taking it for neuropathy, and it hasn't done shit.  Give 'em hell.
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline zach

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i am undetectable
« Reply #15 on: June 18, 2014, 03:20:33 pm »
as of 6/6 labwork

viral load UD!!!
cd4 absolute 84
cd4% 10%

ain't that some shit?

Offline Theyer

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Re: i am undetectable
« Reply #16 on: June 18, 2014, 03:27:52 pm »
Thank you for providing a happy warm feeling you Warrior you.

I am delighted.

Brill

m
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Jeff G

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Re: i am undetectable
« Reply #17 on: June 18, 2014, 03:33:19 pm »
Thats fantabulistic news of good . You go .
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Offline tryingtostay

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Re: i am undetectable
« Reply #18 on: June 18, 2014, 03:33:41 pm »
Good to hear Zach!

Offline thunter34

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Re: i am undetectable
« Reply #19 on: June 18, 2014, 04:38:18 pm »
that's my buddy right there, y'all.
AIDS isn't for sissies.

Offline zach

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Re: i am undetectable
« Reply #20 on: June 18, 2014, 04:55:58 pm »
http://www.cnn.com/2011/12/02/health/conditions/ponce-hiv-aids-clinic/

my nurse

be warned, the story hits hard

edited to add... it hits really hard. its worth reading, please take the time. i had no idea until today by chance
« Last Edit: June 18, 2014, 05:04:09 pm by zach »

Offline eric48

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Re: i am undetectable
« Reply #21 on: June 18, 2014, 04:59:24 pm »
Good job!

Very happy for you!

Mobile.eric
NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly

Offline bmancanfly

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Re: i am undetectable
« Reply #22 on: June 18, 2014, 05:16:03 pm »
Like many here I've been following your travails.  Glad you've received some well deserved great news.

In the din of daily life we can all easily forget what a miracle,  and blessing,  modern meds have been for us all.  Not everyone was so fortunate.  Thanks for reminding me.

Good luck.
"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

Offline bocker3

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Re: i am undetectable
« Reply #23 on: June 18, 2014, 05:54:55 pm »
Great news......  without circulating virus, those little CD4's will continue to grow and grow......

Offline Jeff G

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Re: i am undetectable
« Reply #24 on: June 18, 2014, 05:56:23 pm »
Great news......  without circulating virus, those little CD4's will continue to grow and grow......

Just like a cd4 chia pet .
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Offline drewm

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Re: i am undetectable
« Reply #25 on: June 18, 2014, 05:58:40 pm »
Great news! Popping the cork  ;)
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

TRIUMEQ - VALTREX -  FLUOXETINE - FENOFIBRATE - PRAVASTATIN - CIALIS


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline britchick

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Re: i am undetectable
« Reply #26 on: June 18, 2014, 06:43:41 pm »
Zach,

Fantastic news!!! :)

britchickxx

Offline tednlou2

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Re: i am undetectable
« Reply #27 on: June 18, 2014, 07:30:14 pm »
Zach,

Great to hear.  Very cool CNN profiled your clinic and nurse.  For many, it probably helps patients to know she is poz and can relate.  I mean, you don't have to be poz to be a great doc or nurse, but I am sure it helps many to feel she can relate. 

It is good they pointed out the numbers are not improving.  Infections are stable and increasing especially in younger folks and minorities.  When I check out sites like A4A, I'm noticing many more listing they are poz, than just a year ago.  And, many are 18-30.  And, that's just those on a site like that and sharing their status. 

I like how the clinic actually takes patients resources and transportation into account.  They try to schedule different procedures/visits for the same day, so the patient doesn't have to come back two days later to see the dentist or therapist.  I have docs, who will just hand you an appt card and never ask what day/time is best for you.

The $36,000 max for ADAP had me wondering.  Do people get no help from ADAP, if they make more than that?  $36k doesn't go very far, especially after taxes.  You would do well to afford a modest apt and modest car.

Anyway, great news about you and great article. 

Offline harleymc

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Re: i am undetectable
« Reply #28 on: June 18, 2014, 07:31:30 pm »
Yaaaaay and stuff.

Welcome to the long road back of reconstituting those cd4s.
Bet you're feeling happy.

Offline initforlife

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Re: i am undetectable
« Reply #29 on: June 18, 2014, 07:40:14 pm »
Happy for you Zach  , and thanks for sharing  the link to your clinic. I feel so ashamed now. the other day when I was at my clinic I was upset there were 3 others there. I thought to myself I don't want the whole world to know. I will never think that again after reading that story. I guess I'm one of the lucky one with Hiv. everything went fast for me  dx March April blood work. meds in May. I will count my blessing from now on!
sometimes it is best to say nothing at all. then to offend

Offline J.R.E.

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Re: i am undetectable
« Reply #30 on: June 18, 2014, 07:54:39 pm »
 8)


CONGRATULATIONS ZACH !! This is GREAT NEWS !!


Ray
Current Meds ; Viramune / Epzicom Eliquis, Diltiazem. Pravastatin 80mg, Ezetimibe. UPDATED 2/18/24
 Tested 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 Oct 2nd, 2023, Viral load Undetectable.
CD 4 @676 /  CD4 % @ 18 %
Lymphocytes,absolute-3815 (within range)


72 YEARS YOUNG

Offline Jmarksto

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Re: i am undetectable
« Reply #31 on: June 19, 2014, 12:39:09 am »
I am happy for you Zack, here's to wishing you continued health and happiness!
03/15/12 Negative
06/15/12 Positive
07/11/12 CD4 790          VL 4,000
08/06/12 CD4 816/38%   VL 49,300
08/20/12 Started Complera
11/06/12 CD4   819/41% VL 38
02/11/13 CD4   935/41% VL UD
06/06/13 CD4   816/41% VL UD
10/28/13 CD4 1131/45% VL 25
02/25/14 CD4   792/37% VL UD
07/09/14 CD4 1004/39% VL UD
11/03/14 CD4   711/34% VL UD
03/13/15 CD4   833/36% VL UD
04/??/15 Truvada & Tivicay
06/01/15 CD4 1100/50% VL UD
10/16/15 CD4   826/43% VL UD
??/??/2017 Descov & Tivicay
2017 VL UD, CD4 stable around 850
2018 VL UD, CD4 stable around 850

Offline BT65

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Re: i am undetectable
« Reply #32 on: June 19, 2014, 06:06:56 am »
That's such wonderful news Zach.  I know what your fight's been so far, and news like this makes it worth it.
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Offline thunter34

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Re: i am undetectable
« Reply #33 on: June 19, 2014, 09:16:53 am »
I underscore Zach's recommendation to read the CNN story on the Ponce Center.
AIDS isn't for sissies.

Offline zach

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Re: i am undetectable
« Reply #34 on: June 19, 2014, 10:00:48 am »
Great news! Popping the cork  ;)

damn drew, your sig, thats a good bounce man

Offline wolfter

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Re: i am undetectable
« Reply #35 on: June 19, 2014, 10:16:02 am »
Most excellent!!!! 

greg
Being honest is not wronging others, continuing the dishonesty is.

Offline mitch777

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Re: i am undetectable
« Reply #36 on: June 19, 2014, 12:46:32 pm »
Great news on your VL Zach!
 
The article was frightening, uplifting, and maddening. It really was worth the read. Thanks for the link!
33 years hiv+ with a curtsy.

Offline Buckmark

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Re: i am undetectable
« Reply #37 on: June 19, 2014, 12:46:54 pm »
Very impressive, Zach.  Didn't take you very long to get to undetectable.
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline phildinftlaudy

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Re: i am undetectable
« Reply #38 on: June 19, 2014, 09:18:00 pm »
Congratulations Zach! 
I will have an extra Corona this weekend to celebrate for (with) you.

 ;D
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 Tonny2

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Re: i am undetectable
« Reply #39 on: June 25, 2014, 01:24:11 pm »
 8)Hey Zach

Congratulations, I have not read your story, no for lack of interest but lack of eyesight, but I read that you are UD, and your cd4 98....I had 20 cd4 when I was DX when the meds were so toxico, and now my cd4 is 498...so whith this new drugs I'm positive hehehe, your cd4 will go up even faster because you being UD...good luck, and I'm happy for you...still you have to watch out for OP, take your meds, Ok?

Offline zach

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Re: i am undetectable
« Reply #40 on: July 21, 2014, 04:06:29 pm »
my newest labs, moving slow, but moving steady

march 27 cd4 9 2% vl 365000
may 7 cd4 67 8% vl 140
june 6 cd4 84 10% vl UD!!!
july 7 cd4 96 12% vl UD

edited for better!!
« Last Edit: July 21, 2014, 04:22:45 pm by zach »

Offline wolfter

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Re: i am undetectable
« Reply #41 on: July 21, 2014, 04:08:19 pm »
slow and steady wins the race.  :)  congrats on the continued improvement
Being honest is not wronging others, continuing the dishonesty is.

Offline mitch777

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Re: i am undetectable
« Reply #42 on: July 21, 2014, 04:14:02 pm »
It took me awhile to see that you had posted July's labs even though it was the only thing moving on the screen. Sometimes I can be so dizzy. lol.

Moving along great Zach!
33 years hiv+ with a curtsy.

Offline wolfter

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  • Posts: 5,470
Re: i am undetectable
« Reply #43 on: July 21, 2014, 04:15:05 pm »
 :o  It took me a while also Mitch.
Being honest is not wronging others, continuing the dishonesty is.

Offline mitch777

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  • Posts: 4,087
Re: i am undetectable
« Reply #44 on: July 21, 2014, 04:18:31 pm »
:o  It took me a while also Mitch.

I think next time Zach needs to put that in bold red for us.  ;D
33 years hiv+ with a curtsy.

Offline Almost2late

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  • Posts: 1,447
Re: i am undetectable
« Reply #45 on: July 21, 2014, 04:20:07 pm »
Those is some strong ass Cd4's.. Damn 12%, Congrats dude!!  :)

Offline zach

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  • Posts: 3,586
Re: i am undetectable
« Reply #46 on: July 21, 2014, 10:59:22 pm »
thanks guys

doc was hoping for faster results, but i'm ok with the long game

only drawback is he was going to let me go to every three months once i got above 100... we'll see next month, that'll be three in a row (hopefully) at UD and six months after restarting treatment

i feel good about this timeline

Offline tednlou2

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  • Posts: 5,730
Re: i am undetectable
« Reply #47 on: July 22, 2014, 12:08:02 am »
Glad to see things are improving each time. 

Offline Tonny2

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  • Posts: 2,938
Re: i am undetectable
« Reply #48 on: July 22, 2014, 01:01:24 pm »
thanks guys

doc was hoping for faster results, but i'm ok with the long game

I'm not sure if I prefer a slow increase or fast increase of cd4...does anyone her know is this matters? if your VL is UD?

Offline Fisher

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  • Posts: 290
Re: i am undetectable
« Reply #49 on: July 28, 2014, 08:48:35 pm »
Great news, Bud!
- fisher
06/15 CD 365 %24 VL<20
01/15 CD 468 %24 VL<20
09/14 CD 385 %22 VL<20
07/14 CD 391 %20 VLUD
04/14 CD 486 %23 VL<20
11/13 CD 351 %21  VL<20
10/13 CD 390 %16  VL<20
06/13 CD 315 %19  VL 22
02/13 CD 396 %14  VL<20
12/12 CD 392 %13  VL320
11/12 CD 428 %13  VL1200
*Started Meds: Atripla
10/12 CD 427 %11  VL 139000 -- 09/12 CD 408 %13 VL 92928
09/11 CD 745 %27 VL CLOT -- 10/10 CD 863 %29 VL 2782
10/09 CD 597 %30 VL 2537 -- 05/08 CD 809 %28 VL 1504
04/07 CD 797 %25 VL 3558 -- 11/06 CD 720 %28 VL 1214
06/05 CD 731 %25 VL 1575 -- 12/04 CD 1176 %30 VL 1329
01/04 CD 959 %26 VL 1011 -- 11/03 CD 1000 %28 VL 1581
12/02 CD 748 %28 -- 10/01 CD 860 %25
08/00 CD 1022 %28 -- 04/99 CD 854 %27
11/98 CD 899 %28 -- 02/97 CD 1400 %37
11/96 CD 1325  VL <500 -- 09/96 – Western Blot
05/83 – 04/98 - Mon - Pa

 


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