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Author Topic: Is there a light at the end of the tunnel?  (Read 39208 times)

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Offline Jim Allen

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Re: Is there a light at the end of the tunnel?
« Reply #50 on: May 10, 2017, 01:55:51 am »
I'm really worried about how fast my immune system will rebound. I've got a long way to go.

Glad to hear your getting better and doing much better. Things take time you know. As for your immune system i presuming you mean CD4?

Well its not a measurement of how healthy your immune system is and its just a snapshot result, even under the HIV negative population its between 500 - 1200 ish and differs from person to person. You could be perfectly healthy with 200 and sick as a dog with a 1000, so less focus on them and instead just focus on what does matter and you can control, Taking your meds, healing and living your life  ;)

Jim

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Offline Tonny2

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Re: Is there a light at the end of the tunnel?
« Reply #51 on: May 10, 2017, 05:00:21 pm »
Holy cow Orez, 8 MILLION? And you still had a high cd4? It only took a vl of 800,000 to knock me down to 8  :(
It's great to see Stribild annihilated all that in 3 months time. Hopefully Genvoya is even quicker. I'm really worried about how fast my immune system will rebound. I've got a long way to go.

      OJO      HELLO LEFTY

AS JIM JUST TOLD YOU, EVERYBODY IS DIFFERENT, YOU DON'T WANT TO KNOW HOW LONG TOOK ME TO GET UD...ONE THING IS FOR SURE, DOESN'T MATTER HOW LONG WILL TAKE YOU TO WHERE YOU WANT TO BE, EVENTUALLY, YOU WILL BE THERE. SOME PEOPLE TAKE A COUPLE OF MONTHS, OTHERS LONGER, BUT YOU WILL BE THERE...TRY TO RELAX, KEEP YOURSELF BUSY, STAY AWAY FROM THESE FORUMS IF WE MAKE YOU MORE SCARED...YOU ARE NOT ALONE ANYMORE, HANG IN THERE...CYBER HUGS                   OJO

PS. I GUESS YOU DIDN'T GET MY PM, HMMM

Offline LeftyBowler300

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  • Posts: 106
Re: Is there a light at the end of the tunnel?
« Reply #52 on: May 11, 2017, 04:51:41 pm »
Thanks Tonny

These forums are a big help. I still don't know why I'm not receiving your PM. I don't even know how to find my blocked list to see if you got blocked by accident.

I'm definitely keeping myself busy, mostly with work and side projects (fixing up my apartment, taking some computer classes, etc..)

It helps to distract me.
Apr 1, 2017 DX - CD4 8 , VL 820,000
OI's: Disseminated Histoplasmosis, Thrush, PCP
Apr 17, 2017 started Genvoya, Bactrim, Sporanox, Azitrhomycin
Jun 9, 2017 - CD4 42 (3%) , VL 100
Jul 17, 2017 - CD4 57 (4%) , VL 53
Sep 16, 2017 - CD4 57 (4%) , VL 130 - Ugh..
Oct 20, 2017 - CD4 63 (5%) , VL 100
Dec 1, 2017 - CD4 56 (3%) , VL <20
Mar 15, 2018 - CD4 73 (5%) , VL <20
Nov 5, 2018 - CD4 104 (7%), UD
Jan 26, 2019 diagnosed with HIV-associated DLBCL (lympoma) with 6cm mass near liver w/ abdominal fatty tissue involvement
6 rounds of RR-EPOCH
2 rounds of high dose methotrexate
(8 rounds of IV chemo total)
11 Lumbar punctures with intrathecal chemo
June 5, 2019 - Complete Response/Remission
Feb 20, 2020 - CD4 187, VL UD
Aug 2020 - CD4 247, VL UD
Stopped all prophylaxis
June 2021 - 2 years remission

Offline Tonny2

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  • Posts: 2,924
Re: Is there a light at the end of the tunnel?
« Reply #53 on: May 11, 2017, 08:45:22 pm »

       OJO       HELLO LEFTY...I'M GLAD YOU ARE KEEPING YOURSELF BUSY, THAT WAY, YOU ARE NOT THINKING ABOUT THE BUG...JUST IN CASE you finish fixing up your apartment, and have some free time, you can always come  do some fixing up in my house, you will feel even better cause you will be helping a legally blind guy, lol.

about the pms, i'm an old timer on here, and i didn't even know you could block people, i could've used that option a long time ago, lol...just kidding....maybe somebody who knows about the subject, would be kind enough to help us out with this situation...hang in there, you are on your way to see the light at the end of this dark tunnel...cyber hugs                                                                                      ojo
« Last Edit: May 11, 2017, 08:51:57 pm by Tonny2 »

Offline JosephP

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  • Keep looking FORWARD... Dx'd 8/10/2013...
Re: Is there a light at the end of the tunnel?
« Reply #54 on: May 20, 2017, 10:10:03 pm »
Hey lefty, As you have found out, there is, indeed, light at the end of the tunnel! I am glad you are getting better and Genvoya is really your miracle drug. I never had any problems with it or its sibling, Stribild. I take it with dinner thinking of changing to lunch time just because is easier. Dinners seem to be complicated affairs..  Keep on going... Keep adhering to your meds and you will be fine..  ;) ;) ;)
Today January 20, 2020, I have taken 2378 pills of my ARV since first pill. This means 79 bottles of 30 pills of ARVs at an average of $3950 per bottle or $313,103 USD for my treatment. I have a compliance of 99.83% taking my meds and only .17% (or 4 pills) non-compliant. Of these four pills two I forgot completely, One I lost and one I didn't have with me while traveling! I became UD 3 months after treatment start   ***We are all dealing with this. And we will live long and productive lives!! AND, yes the Lord is my shepherd. Life is good... And thanks for the meds! ***

Offline LeftyBowler300

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Re: Is there a light at the end of the tunnel?
« Reply #55 on: May 21, 2017, 01:27:28 pm »
Hey Joseph!

Yeah I switched the time I take it to lunch time as well. I don't have any side effects, and I don't want to keep rushing home after work to scarf down some food and take it. Lunch time is much more convenient. I carry a small pill pack (looks like a locket only a little deeper) in my pocket, with Genvoya, a multivitamin, my allergy pill, and a probiotic, with a "mothership" weekly pill box in my bag, just incase something happens and I lose the pill pack.

Most recent appointment with my IDS was last week. They only took a CBC and a test to check the spornox levels in my blood. She said everything looks good, but I'm still anemic (given how far I've got to bounce back I'm not surprised). She said eventually that will resolve, and to make sure my multivitamin has iron in it. (My last one didn't, so I bought a new one.)

Sometime in early June will be my first VL/CD4 since my diagnosis. IDS thinks the results will be good. I'm anxious as always.
Apr 1, 2017 DX - CD4 8 , VL 820,000
OI's: Disseminated Histoplasmosis, Thrush, PCP
Apr 17, 2017 started Genvoya, Bactrim, Sporanox, Azitrhomycin
Jun 9, 2017 - CD4 42 (3%) , VL 100
Jul 17, 2017 - CD4 57 (4%) , VL 53
Sep 16, 2017 - CD4 57 (4%) , VL 130 - Ugh..
Oct 20, 2017 - CD4 63 (5%) , VL 100
Dec 1, 2017 - CD4 56 (3%) , VL <20
Mar 15, 2018 - CD4 73 (5%) , VL <20
Nov 5, 2018 - CD4 104 (7%), UD
Jan 26, 2019 diagnosed with HIV-associated DLBCL (lympoma) with 6cm mass near liver w/ abdominal fatty tissue involvement
6 rounds of RR-EPOCH
2 rounds of high dose methotrexate
(8 rounds of IV chemo total)
11 Lumbar punctures with intrathecal chemo
June 5, 2019 - Complete Response/Remission
Feb 20, 2020 - CD4 187, VL UD
Aug 2020 - CD4 247, VL UD
Stopped all prophylaxis
June 2021 - 2 years remission

Offline Tonny2

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  • Posts: 2,924
Re: Is there a light at the end of the tunnel?
« Reply #56 on: May 21, 2017, 04:25:38 pm »


        OJO       HELLO LEFTY

IT SEEMS THAT YOU ARE DOING BETTER, WHICH I'M VERY HAPPY FOR YOU...LUCKY GUYS, A PILL A DAY, GRRR!!!, LOL...YOU WILL SEE GOOD NUMBERS NEXT VISIT TO THE VAMPIRE, JUST KEEP TAKING YOUR PILL AS PRESCRIBED, YOU ARE ON YOUR WAY TO COMPLETE RECOVERY...BTW, I REPLIED TO YOUR PM, NO ANSWER, HMMMM???, I GUESS NOBODY ON HERE WANTS TO HELP US RESOLVE THIS PROBLEM  :(...ANYWAY, BEST OF LUCK AND KEEP US POSTED, WE WANT TO CELEBRATE WITH YOU THE BIG UD RESULT...CYBER HUG                                                        OJO

PS, MAYBE YOU WANT TO ASK ONE OF THE MODERATOR ABOUT THE "BLOCK" THING

Offline LeftyBowler300

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  • Posts: 106
Re: Is there a light at the end of the tunnel?
« Reply #57 on: June 12, 2017, 10:07:10 pm »
Hey all just giving an update.

Got my first labs since my diagnosis
Timeline:
March 29 - VL 820,000 CD4 8
April 17 - Started Genvoya, Bactrim, Azithromycin, Sporanox
June 09 - VL 100 , CD 42

I'm very happy about my VL, kind of upset about my CD4. I guess I had a fantasy of being UD and 200+ after less than two months of treatment. Ridiculous I know :P. I just want to hurry up and be over that 200 CD4 threshold.
Apr 1, 2017 DX - CD4 8 , VL 820,000
OI's: Disseminated Histoplasmosis, Thrush, PCP
Apr 17, 2017 started Genvoya, Bactrim, Sporanox, Azitrhomycin
Jun 9, 2017 - CD4 42 (3%) , VL 100
Jul 17, 2017 - CD4 57 (4%) , VL 53
Sep 16, 2017 - CD4 57 (4%) , VL 130 - Ugh..
Oct 20, 2017 - CD4 63 (5%) , VL 100
Dec 1, 2017 - CD4 56 (3%) , VL <20
Mar 15, 2018 - CD4 73 (5%) , VL <20
Nov 5, 2018 - CD4 104 (7%), UD
Jan 26, 2019 diagnosed with HIV-associated DLBCL (lympoma) with 6cm mass near liver w/ abdominal fatty tissue involvement
6 rounds of RR-EPOCH
2 rounds of high dose methotrexate
(8 rounds of IV chemo total)
11 Lumbar punctures with intrathecal chemo
June 5, 2019 - Complete Response/Remission
Feb 20, 2020 - CD4 187, VL UD
Aug 2020 - CD4 247, VL UD
Stopped all prophylaxis
June 2021 - 2 years remission

Offline Ptrk3

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Re: Is there a light at the end of the tunnel?
« Reply #58 on: June 13, 2017, 12:19:42 am »
Congratulations on your significant viral load reduction!  That's a huge reduction.

You will be fine.  Your CD4's will recover.  It just takes time.

Keep to your antiretroviral regimen (and related prophylactic medications) and all will be well.
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Offline paintedroom

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  • Dx`d July 2016
Re: Is there a light at the end of the tunnel?
« Reply #59 on: June 13, 2017, 03:52:02 am »
Great news Lefty. :)

We share the disappointment in cd4`s - my nadir of 50..after 3 months on meds 193.I gave bloods again 2 weeks ago and haven`t rung in to find out the new numbers.As they say around here,it`s not the only measure of health,it`s how you feel and being UD, which you will in a matter of weeks.

I think i`m a slow riser so i decided to quit drinking and having a social smoke(which amounted to a bottle of red on the weekend..and a half sometimes) and clean up my diet.. and of course regular exercise.I guess the only way i will have peace of mind is to do everything in my power to enable my cd4`s climb above 200 and stay there.

The main thing is that you are moving,most certainly,in the right direction.Stay strong and healthy,P.
Dx`d mid July 2016
8/8/2016 - CD4 50     VL 50,000
5/9/2016 -  CD4 150
13/9/2016  VL  undetectable.
March `17 - CD4 193   VL undetectable.
March  `18 CD4 214    VL undetectable
March 2019 CD4 325  VL UD
Genvoya - Changed to Biktarvy feb 2021

Offline Wade

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Re: Is there a light at the end of the tunnel?
« Reply #60 on: June 13, 2017, 07:18:06 am »
You go Lefty !

Those are some seriously good numbers in short period period of 2 months  :)
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Offline Tonny2

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Re: Is there a light at the end of the tunnel?
« Reply #61 on: June 13, 2017, 03:44:59 pm »

          ojo        Hello Lefty, I guess you got a "300" with your med, excelent number, I'm sure you are already UD by now...Your "soldiers", yhey just fought and defeated (almost) the enemy, (the virus), they are all in the process of recovering, it will take time tho, but now, that there is not enemy to fight against, they will be able to recover and start multiplicating like bunnies...congratulations and be patient, just keep doing what you have been doing...cyber hugs                                                          ojo

@psintedroom...my dear friend, good things come to those who wait...I'm sure you are over that treshold and we will celebrate with wine...You do not have to change drastrically your life in order to get an increase of your cd4, tho, living a healthier life is ok too...huge ciber hug on your way...If I come to visit and you aren't drinking anymore, who is going to drink with me?  ;(

Offline LeftyBowler300

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Re: Is there a light at the end of the tunnel?
« Reply #62 on: June 14, 2017, 07:32:34 pm »
Congratulations on your significant viral load reduction!  That's a huge reduction.

You go Lefty !
Those are some seriously good numbers in short period period of 2 months  :)

Thanks guys. It's amazing that all that VL got wiped out in less than two months.

Great news Lefty. :)

I think i`m a slow riser so i decided to quit drinking and having a social smoke(which amounted to a bottle of red on the weekend..and a half sometimes) and clean up my diet.. and of course regular exercise.I guess the only way i will have peace of mind is to do everything in my power to enable my cd4`s climb above 200 and stay there.

Luckily i don't smoke or drink, but my diet has been "liberal" lately to say the least. I've eaten whole grains yogurts fruits one meal, fried chicken sandwiches soda and ice cream the next lol...

          ojo        Hello Lefty, I guess you got a "300" with your med, excelent number, I'm sure you are already UD by now...Your "soldiers", yhey just fought and defeated (almost) the enemy, (the virus), they are all in the process of recovering, it will take time tho, but now, that there is not enemy to fight against, they will be able to recover and start multiplicating like bunnies...congratulations and be patient, just keep doing what you have been doing...cyber hugs                                                          ojo
Thanks Tonny :) sweet as always "cyber hugs" hope you're doing well
Apr 1, 2017 DX - CD4 8 , VL 820,000
OI's: Disseminated Histoplasmosis, Thrush, PCP
Apr 17, 2017 started Genvoya, Bactrim, Sporanox, Azitrhomycin
Jun 9, 2017 - CD4 42 (3%) , VL 100
Jul 17, 2017 - CD4 57 (4%) , VL 53
Sep 16, 2017 - CD4 57 (4%) , VL 130 - Ugh..
Oct 20, 2017 - CD4 63 (5%) , VL 100
Dec 1, 2017 - CD4 56 (3%) , VL <20
Mar 15, 2018 - CD4 73 (5%) , VL <20
Nov 5, 2018 - CD4 104 (7%), UD
Jan 26, 2019 diagnosed with HIV-associated DLBCL (lympoma) with 6cm mass near liver w/ abdominal fatty tissue involvement
6 rounds of RR-EPOCH
2 rounds of high dose methotrexate
(8 rounds of IV chemo total)
11 Lumbar punctures with intrathecal chemo
June 5, 2019 - Complete Response/Remission
Feb 20, 2020 - CD4 187, VL UD
Aug 2020 - CD4 247, VL UD
Stopped all prophylaxis
June 2021 - 2 years remission

Offline LeftyBowler300

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  • Posts: 106
Re: Is there a light at the end of the tunnel?
« Reply #63 on: June 26, 2017, 04:36:16 am »
Hey guys,

I have a question about some symptoms I'm having.

I'm getting a strange breakout of itchy bumps on my face and arms.
Around the temple, above my eyebrows, on my cheekbone below my eye, on my jaw line, and on my upper/outer arms are pretty much the only areas. My eyelids seem itchy as well.

I was wondering if anyone has experienced something similar. I want to pinpoint the cause (maybe the bactrim?)

I'm taking azithromycin, bactrim, itraconazole, genvoya

It's frustrating trying to figure out if it's my body trying to fight something, or if it's medicine.
Apr 1, 2017 DX - CD4 8 , VL 820,000
OI's: Disseminated Histoplasmosis, Thrush, PCP
Apr 17, 2017 started Genvoya, Bactrim, Sporanox, Azitrhomycin
Jun 9, 2017 - CD4 42 (3%) , VL 100
Jul 17, 2017 - CD4 57 (4%) , VL 53
Sep 16, 2017 - CD4 57 (4%) , VL 130 - Ugh..
Oct 20, 2017 - CD4 63 (5%) , VL 100
Dec 1, 2017 - CD4 56 (3%) , VL <20
Mar 15, 2018 - CD4 73 (5%) , VL <20
Nov 5, 2018 - CD4 104 (7%), UD
Jan 26, 2019 diagnosed with HIV-associated DLBCL (lympoma) with 6cm mass near liver w/ abdominal fatty tissue involvement
6 rounds of RR-EPOCH
2 rounds of high dose methotrexate
(8 rounds of IV chemo total)
11 Lumbar punctures with intrathecal chemo
June 5, 2019 - Complete Response/Remission
Feb 20, 2020 - CD4 187, VL UD
Aug 2020 - CD4 247, VL UD
Stopped all prophylaxis
June 2021 - 2 years remission

Offline paintedroom

  • Member
  • Posts: 375
  • Dx`d July 2016
Re: Is there a light at the end of the tunnel?
« Reply #64 on: June 26, 2017, 06:14:10 am »
Hey again Lefty,

Well i was put on bactrim as well and got a ferocious rash all over my feet..i was spared the face thankfully.I used that 1% steroid cream and it helped control it somewhat,so i could put a pair of socks on.It disappeared as i got stronger.
Bactrim is known to give various rashes and skin reactions so that may well be it.The curse of this thingy is the forever watchful forensic inspections and the ready panic that sometimes attends.

Anyway,as we all know, a Doctors visit is the only way to really know..or maybe some other member here knows better.My bet is it`s the bactrim.

P.

Dx`d mid July 2016
8/8/2016 - CD4 50     VL 50,000
5/9/2016 -  CD4 150
13/9/2016  VL  undetectable.
March `17 - CD4 193   VL undetectable.
March  `18 CD4 214    VL undetectable
March 2019 CD4 325  VL UD
Genvoya - Changed to Biktarvy feb 2021

Offline Wade

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Re: Is there a light at the end of the tunnel?
« Reply #65 on: June 26, 2017, 09:00:39 am »
Hey Lefty, I was on a Bactrim IV while in the hospital in 95. I can't remember for how long but it was at least over a week before I was switched to oral doses.

Several weeks after I was home I was still on high doses and out of the blue I developed a nasty rash. It was from the Bactrim, I developed an allergy to it and am still allergic to all Sulfa drugs to this day.

See your doctor if you can or at least call, I was switched to Dapsone and had no problems tolerating it.

Wade
HIV 101 - Basics
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Offline Tonny2

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  • Posts: 2,924
Re: Is there a light at the end of the tunnel?
« Reply #66 on: June 26, 2017, 04:22:45 pm »


         ojo       Hello my good friend lefty...well, I guess you have to talk to your doctor about this situation...are you staying away from the sun's rays?, does it feel like burning?...azythromicin and bactrim can cause this kind of symptoms if you are under the sun a lot...I had the same thing when taking zithromax, I'm allergic to Bactrim and sulfas too (hives)..please check with your doctor, I hope you find out what the problem is, I know what you mean feeling frustrated no knowing the cause...cyber hugs      ojo

Offline LeftyBowler300

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  • Posts: 106
Re: Is there a light at the end of the tunnel?
« Reply #67 on: July 22, 2017, 01:08:15 pm »
Just an update on my latest numbers:

Apr 1 - CD4=8 , VL=820,000
June 9 - CD4 = 42 (3%) , VL = 100
July 17 - CD4 = 57 (4%) , VL = 53

Well I'm happy things aren't worse, but I guess my body is wanting to take its sweet little time to get where it needs to be....  ::)
Apr 1, 2017 DX - CD4 8 , VL 820,000
OI's: Disseminated Histoplasmosis, Thrush, PCP
Apr 17, 2017 started Genvoya, Bactrim, Sporanox, Azitrhomycin
Jun 9, 2017 - CD4 42 (3%) , VL 100
Jul 17, 2017 - CD4 57 (4%) , VL 53
Sep 16, 2017 - CD4 57 (4%) , VL 130 - Ugh..
Oct 20, 2017 - CD4 63 (5%) , VL 100
Dec 1, 2017 - CD4 56 (3%) , VL <20
Mar 15, 2018 - CD4 73 (5%) , VL <20
Nov 5, 2018 - CD4 104 (7%), UD
Jan 26, 2019 diagnosed with HIV-associated DLBCL (lympoma) with 6cm mass near liver w/ abdominal fatty tissue involvement
6 rounds of RR-EPOCH
2 rounds of high dose methotrexate
(8 rounds of IV chemo total)
11 Lumbar punctures with intrathecal chemo
June 5, 2019 - Complete Response/Remission
Feb 20, 2020 - CD4 187, VL UD
Aug 2020 - CD4 247, VL UD
Stopped all prophylaxis
June 2021 - 2 years remission

Offline Ptrk3

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Re: Is there a light at the end of the tunnel?
« Reply #68 on: July 22, 2017, 01:15:54 pm »
Congratulations on your continuing progress!  Everything is moving in the right direction.  Keep up the good work.
HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline Tonny2

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  • Posts: 2,924
Re: Is there a light at the end of the tunnel?
« Reply #69 on: July 22, 2017, 04:22:46 pm »


       ojo       Hello my dear "blocker" friend, how nice to hear from you again...I'm glad you are doing good, slowly but in the right direction, remember, your initial cd4 were too low, so your body is recovering little by little. Just keep doing what you have been doing, blocking me, lol...Is always nice to hear back from members like you, for some reason, I like you, eventhough you blocked me form the PM thing, hahahh, Just teasing you...please let us know how things keep going in your life. Remember that you have to take care of you for a while, washing your hands often help...wishing you the beastas always...hugs                                                                                 ojo

Offline JosephP

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  • Keep looking FORWARD... Dx'd 8/10/2013...
Re: Is there a light at the end of the tunnel?
« Reply #70 on: July 22, 2017, 06:46:04 pm »
Holy cow Orez, 8 MILLION? And you still had a high cd4? It only took a vl of 800,000 to knock me down to 8  :(
It's great to see Stribild annihilated all that in 3 months time. Hopefully Genvoya is even quicker. I'm really worried about how fast my immune system will rebound. I've got a long way to go.

Yes, wow... 8 million and great cd4! Me like lefty was knocked to 198 (yeah... two points below for Dr. to check the 'AIDS' box and report me to Health Department!!!) by a miserable count of 78K!!! I started on Stribild and two months later I was UD! Never had a problem with meds.. I got switched to Genvoya because of its easiness on liver and haven't had any problems.. I was scared to switch! What if this one doesn't work? What then?
And your immune system will recover and, although, we still have the 'bug' you will feel better!
Today January 20, 2020, I have taken 2378 pills of my ARV since first pill. This means 79 bottles of 30 pills of ARVs at an average of $3950 per bottle or $313,103 USD for my treatment. I have a compliance of 99.83% taking my meds and only .17% (or 4 pills) non-compliant. Of these four pills two I forgot completely, One I lost and one I didn't have with me while traveling! I became UD 3 months after treatment start   ***We are all dealing with this. And we will live long and productive lives!! AND, yes the Lord is my shepherd. Life is good... And thanks for the meds! ***

Offline JosephP

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Re: Is there a light at the end of the tunnel?
« Reply #71 on: July 22, 2017, 06:49:15 pm »
Just an update on my latest numbers:

Apr 1 - CD4=8 , VL=820,000
June 9 - CD4 = 42 (3%) , VL = 100
July 17 - CD4 = 57 (4%) , VL = 53

Well I'm happy things aren't worse, but I guess my body is wanting to take its sweet little time to get where it needs to be....  ::)


Going the right direction is the point here!
Today January 20, 2020, I have taken 2378 pills of my ARV since first pill. This means 79 bottles of 30 pills of ARVs at an average of $3950 per bottle or $313,103 USD for my treatment. I have a compliance of 99.83% taking my meds and only .17% (or 4 pills) non-compliant. Of these four pills two I forgot completely, One I lost and one I didn't have with me while traveling! I became UD 3 months after treatment start   ***We are all dealing with this. And we will live long and productive lives!! AND, yes the Lord is my shepherd. Life is good... And thanks for the meds! ***

Offline LeftyBowler300

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Re: Is there a light at the end of the tunnel?
« Reply #72 on: July 23, 2017, 09:35:52 am »

       ojo       Hello my dear "blocker" friend, how nice to hear from you again...I'm glad you are doing good, slowly but in the right direction, remember, your initial cd4 were too low, so your body is recovering little by little. Just keep doing what you have been doing, blocking me, lol...Is always nice to hear back from members like you, for some reason, I like you, eventhough you blocked me form the PM thing, hahahh, Just teasing you...please let us know how things keep going in your life. Remember that you have to take care of you for a while, washing your hands often help...wishing you the beastas always...hugs                                                                                 ojo

Hey Tonny! *hug*
I swear I didn't block you, at least intentionally lol. I've been trying to figure out why I'm not getting your PM's, I even messaged Jim about it!

I've been feeling okay. I do need to take better care of myself though. I've been eating lots of unhealthy food lately.. I've upped the soda and the sweets, and lessened the fruits and vegetables. I guess I can't complain about my body given the stuff I'm putting in it :P

Congratulations on your continuing progress!  Everything is moving in the right direction.  Keep up the good work.

Thanks Patrick :)
Going the right direction is the point here!
Yeh I guess that's all that matters. I wish there was a NOS button or a turbo to speed it up  ;D
Apr 1, 2017 DX - CD4 8 , VL 820,000
OI's: Disseminated Histoplasmosis, Thrush, PCP
Apr 17, 2017 started Genvoya, Bactrim, Sporanox, Azitrhomycin
Jun 9, 2017 - CD4 42 (3%) , VL 100
Jul 17, 2017 - CD4 57 (4%) , VL 53
Sep 16, 2017 - CD4 57 (4%) , VL 130 - Ugh..
Oct 20, 2017 - CD4 63 (5%) , VL 100
Dec 1, 2017 - CD4 56 (3%) , VL <20
Mar 15, 2018 - CD4 73 (5%) , VL <20
Nov 5, 2018 - CD4 104 (7%), UD
Jan 26, 2019 diagnosed with HIV-associated DLBCL (lympoma) with 6cm mass near liver w/ abdominal fatty tissue involvement
6 rounds of RR-EPOCH
2 rounds of high dose methotrexate
(8 rounds of IV chemo total)
11 Lumbar punctures with intrathecal chemo
June 5, 2019 - Complete Response/Remission
Feb 20, 2020 - CD4 187, VL UD
Aug 2020 - CD4 247, VL UD
Stopped all prophylaxis
June 2021 - 2 years remission

Offline LeftyBowler300

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Re: Is there a light at the end of the tunnel?
« Reply #73 on: September 19, 2017, 05:03:14 pm »
Well I got my most recent lab results today... it’s been two months so I was really hoping for good news and a nice jump in numbers.... didn’t get that at all...

My CD4 stayed the same at 57 and my VL actually went up to 130...

I’m not sure what to do as I have been 100% adherent.

I’m trying to stay positive and not get discouraged... but this feels a little like a knife in the heart  :'(
Apr 1, 2017 DX - CD4 8 , VL 820,000
OI's: Disseminated Histoplasmosis, Thrush, PCP
Apr 17, 2017 started Genvoya, Bactrim, Sporanox, Azitrhomycin
Jun 9, 2017 - CD4 42 (3%) , VL 100
Jul 17, 2017 - CD4 57 (4%) , VL 53
Sep 16, 2017 - CD4 57 (4%) , VL 130 - Ugh..
Oct 20, 2017 - CD4 63 (5%) , VL 100
Dec 1, 2017 - CD4 56 (3%) , VL <20
Mar 15, 2018 - CD4 73 (5%) , VL <20
Nov 5, 2018 - CD4 104 (7%), UD
Jan 26, 2019 diagnosed with HIV-associated DLBCL (lympoma) with 6cm mass near liver w/ abdominal fatty tissue involvement
6 rounds of RR-EPOCH
2 rounds of high dose methotrexate
(8 rounds of IV chemo total)
11 Lumbar punctures with intrathecal chemo
June 5, 2019 - Complete Response/Remission
Feb 20, 2020 - CD4 187, VL UD
Aug 2020 - CD4 247, VL UD
Stopped all prophylaxis
June 2021 - 2 years remission

Offline Ptrk3

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Re: Is there a light at the end of the tunnel?
« Reply #74 on: September 19, 2017, 09:37:55 pm »
Your viral load is much lower than when you were first diagnosed, so things are going/remain much better.  Sometime these things do take time.  Very likely, your viral load--which, really, would have been considered undetectable not that long ago--will be undetectable by your next blood test.

It does take time, too, for the CD4 count to rise.  Do not be discouraged.  Keep to your regimen and continue to work with your healthcare provider.

You will be fine, truly.
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Offline lightalltheway

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Re: Is there a light at the end of the tunnel?
« Reply #75 on: September 20, 2017, 01:44:44 pm »
Lefty,

I have spent all my evening reading your posts and following up with your case. I really feel your pain and all the suffering that you are going into, rest assured there is a BRIGHT light at the end of the tunnel.

Do not worry about a minimum increase in your VL because it could be due viral blips which can happen due several reasons. Simple one: the body is fighting a minor infection. A better clear idea will be within your next lab results. I am sure your doctor said so too.

in cite of your cd4 count, please don't stress much about it. It will take time to recover and increase, gradually and slowly. A reading of cd4 count is not an actual one. CD4 test results may vary for several reasons such as stress, sickness, infection, sport, and the time of the day (AM, PM). It is advised to look at the cd4 percentage and over cd4 trend through several tests. I say this out of experience.

What matter is you feel ok and healthy, try to stay focused on adapting to healthy life attitudes. I read that you are a gym guy, how is it now? Maybe it is the right time to go back ..

Finally, you will very soon be UN, the virus will be so little to the extend that it wont do any harm to your body and that's the start of a great victory.

I really hope you will read my message with both, your heart and your mind, sending you my wishes and light all the way.

Prince

Offline Tonny2

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Re: Is there a light at the end of the tunnel?
« Reply #76 on: September 20, 2017, 01:58:05 pm »


       ojo       Hello Lefty "blocker"...it took a long time for your cd4 to get where it is, so, it will take awhile to recover, try to be calmed...your med is working, let's wait and see your next blood work results, you will see that you are going to be UD,,,now that you are positive, you got to be positive...hugs and keep us posted                       ojo

Offline Tonny2

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Re: Is there a light at the end of the tunnel?
« Reply #77 on: September 21, 2017, 01:48:54 pm »


      ojo      Hello Lefty...I got your PM, and I replied to it. I hope you got it...hugs

Offline LeftyBowler300

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Re: Is there a light at the end of the tunnel?
« Reply #78 on: September 21, 2017, 05:35:58 pm »
Your viral load is much lower than when you were first diagnosed, so things are going/remain much better.  Sometime these things do take time.  Very likely, your viral load--which, really, would have been considered undetectable not that long ago--will be undetectable by your next blood test.

It does take time, too, for the CD4 count to rise.  Do not be discouraged.  Keep to your regimen and continue to work with your healthcare provider.

You will be fine, truly.

Thank you for your encouragement Patrick. I'm an impatient person who likes instant progress, especially when it comes to my health. I guess I have to change my expectations when it comes to this..


I really hope you will read my message with both, your heart and your mind, sending you my wishes and light all the way.

Prince

Thanks Prince. I do feel like my body is fighting something. I have a headache and nasal congestion, so possibly a viral sinus infection. Maybe that affected my numbers a bit.

I am back in bowling leagues.. 4 of them actually.. so I've been pretty active. That also means I'm around a lot of people so more chances I'm around someone who's sick  :P


      ojo      Hello Lefty...I got your PM, and I replied to it. I hope you got it...hugs

Tonny it looks like I can PM you, but you can't PM me since I didn't receive your reply. I will get to the bottom of this!
Thank you always for you warm words of encouragement  :)
Apr 1, 2017 DX - CD4 8 , VL 820,000
OI's: Disseminated Histoplasmosis, Thrush, PCP
Apr 17, 2017 started Genvoya, Bactrim, Sporanox, Azitrhomycin
Jun 9, 2017 - CD4 42 (3%) , VL 100
Jul 17, 2017 - CD4 57 (4%) , VL 53
Sep 16, 2017 - CD4 57 (4%) , VL 130 - Ugh..
Oct 20, 2017 - CD4 63 (5%) , VL 100
Dec 1, 2017 - CD4 56 (3%) , VL <20
Mar 15, 2018 - CD4 73 (5%) , VL <20
Nov 5, 2018 - CD4 104 (7%), UD
Jan 26, 2019 diagnosed with HIV-associated DLBCL (lympoma) with 6cm mass near liver w/ abdominal fatty tissue involvement
6 rounds of RR-EPOCH
2 rounds of high dose methotrexate
(8 rounds of IV chemo total)
11 Lumbar punctures with intrathecal chemo
June 5, 2019 - Complete Response/Remission
Feb 20, 2020 - CD4 187, VL UD
Aug 2020 - CD4 247, VL UD
Stopped all prophylaxis
June 2021 - 2 years remission

Offline LeftyBowler300

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Re: Is there a light at the end of the tunnel?
« Reply #79 on: October 23, 2017, 10:35:54 pm »
got my 3 week lab results (my IDS wanted to do them quick just to make sure I'm not having treatment failure, since my CD4 was "stuck" for 2 months.

Well it went up a bit... to 63 (5%)

VL dropped back to 100 from 130.

So I guess it's working... just at a snail pace.  ::)
Apr 1, 2017 DX - CD4 8 , VL 820,000
OI's: Disseminated Histoplasmosis, Thrush, PCP
Apr 17, 2017 started Genvoya, Bactrim, Sporanox, Azitrhomycin
Jun 9, 2017 - CD4 42 (3%) , VL 100
Jul 17, 2017 - CD4 57 (4%) , VL 53
Sep 16, 2017 - CD4 57 (4%) , VL 130 - Ugh..
Oct 20, 2017 - CD4 63 (5%) , VL 100
Dec 1, 2017 - CD4 56 (3%) , VL <20
Mar 15, 2018 - CD4 73 (5%) , VL <20
Nov 5, 2018 - CD4 104 (7%), UD
Jan 26, 2019 diagnosed with HIV-associated DLBCL (lympoma) with 6cm mass near liver w/ abdominal fatty tissue involvement
6 rounds of RR-EPOCH
2 rounds of high dose methotrexate
(8 rounds of IV chemo total)
11 Lumbar punctures with intrathecal chemo
June 5, 2019 - Complete Response/Remission
Feb 20, 2020 - CD4 187, VL UD
Aug 2020 - CD4 247, VL UD
Stopped all prophylaxis
June 2021 - 2 years remission

Offline CaveyUK

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Re: Is there a light at the end of the tunnel?
« Reply #80 on: November 01, 2017, 05:15:57 pm »
It's a frustratingly stuttering start for sure, but hang on in there.

Your VL would have been UD a few years back, and your CD4 cells will take their time given the low start you had.

I'm sure like many things in life, you will see a breakthrough before you know it
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Offline kentfrat1783

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Re: Is there a light at the end of the tunnel?
« Reply #81 on: November 01, 2017, 05:55:27 pm »
Hi,

I'm with you.  My numbers are taking time to adjust as well.  I'm just waiting for next month to see where my numbers will be at. 

Some of us are just the lucky ones I guess.  Just trying to be a little positive (no pun intended). 

I still remember others on here talking about don't pay attention to just a single data point but make sure to look at over time.  I do agree with them on that, but as work with financial statements I like looking at data points.  Just need to remember sometimes things go down but they always go back up. 

Just keep doing what you should do.

Kenneth
Date - CD4 - Percent - VL
08/23/23 - 366 - 26%
06/20/23 - 349 - 21% - UD
04/15/23 - 229 - 19% - <20
11/14/22 - 486 - 24% - 73
10/12/22 - 316 - 19% - <20
06/20/22 - 292 - 21% - <20
01/25/22 - 321 - 22% - <20
09/22/21 - 278 - 19% - <20
02/02/21 - 225 - 19% - <20
06/08/20 - 257 - 20% - <20
03/17/20 - 285 - 19% - 101 (2.00)
12/17/19 - 290 - 20% - <20
09/17/19 - 218 - 16%
06/18/19 - 173 - 16% - <20
03/13/19 - 170 - 16% - <20
January 2019 - Started Triumeq
12/05/08 - 174 - 18% - <20
08/28/18 - 166 - 15% - <20
05/08/18 - 106 - 11% - <20
03/05/18 -   90 - 10% - <20
12/11/17 -   60 -   8%
09/07/17 -   42 -   6% - 54 (1.70)
May 2017 - Started Atripla
05/11/17 -    2 -    1% - 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: US

Offline harleymc

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Re: Is there a light at the end of the tunnel?
« Reply #82 on: November 02, 2017, 05:04:49 am »
I really have no idea why your doctor is ordering blood tests so frequently, it seems like overkill to me and somthing that is leading to more patient stress.

Maybe you could tell your doctor you don't want to know the results unless a change in treatment is warranted.

Offline LeftyBowler300

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  • Posts: 106
Re: Is there a light at the end of the tunnel?
« Reply #83 on: November 03, 2017, 09:42:04 am »
Is a VL of 100 after 6 months worrisome? I see most people with UD and <50. I’m hoping the medicine knocks that last bit down, but what if it doesn’t?
There’s not enough VL for genotyping, but probably just enough to ensure my CD4’s stay to a crawl, if they move at all.
Apr 1, 2017 DX - CD4 8 , VL 820,000
OI's: Disseminated Histoplasmosis, Thrush, PCP
Apr 17, 2017 started Genvoya, Bactrim, Sporanox, Azitrhomycin
Jun 9, 2017 - CD4 42 (3%) , VL 100
Jul 17, 2017 - CD4 57 (4%) , VL 53
Sep 16, 2017 - CD4 57 (4%) , VL 130 - Ugh..
Oct 20, 2017 - CD4 63 (5%) , VL 100
Dec 1, 2017 - CD4 56 (3%) , VL <20
Mar 15, 2018 - CD4 73 (5%) , VL <20
Nov 5, 2018 - CD4 104 (7%), UD
Jan 26, 2019 diagnosed with HIV-associated DLBCL (lympoma) with 6cm mass near liver w/ abdominal fatty tissue involvement
6 rounds of RR-EPOCH
2 rounds of high dose methotrexate
(8 rounds of IV chemo total)
11 Lumbar punctures with intrathecal chemo
June 5, 2019 - Complete Response/Remission
Feb 20, 2020 - CD4 187, VL UD
Aug 2020 - CD4 247, VL UD
Stopped all prophylaxis
June 2021 - 2 years remission

Offline Jim Allen

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Re: Is there a light at the end of the tunnel?
« Reply #84 on: November 03, 2017, 10:43:29 am »
What does your HIV specialist say?

My two cents are some people are UD within weeks and others take months. I've seen some people switch treatment to knock the low level VL down if it takes a really long time, however as long as your HIV specialist is happy with the progress so should you be. 

Jim


https://www.poz.com/basics/hiv-basics/switching-hiv-treatment

Quote

How do I know if my treatment is not working?

You and your provider will need to keep an eye on your viral load and CD4 cell counts using routine blood tests. If any of the following occur, it might be possible that your drugs aren’t working correctly:

If your viral load is not lower than 400 after 24 weeks (six months) of starting therapy. An early way to tell if a drug regimen is effective is to look for a 90 percent drop in viral load between two to eight weeks after starting therapy. For example, if your viral load starts off at 50,000 and drops to 5,000 after eight weeks, chances are good that your viral load will be less than 400 after six months of treatment.

If your viral load is not lower than 50 (“undetectable”) after 48 weeks (almost a year) of starting therapy. Undetectable does not mean zero—it means that your viral load is less than the minimum amount of virus the test can detect. Today’s more sensitive tests can measure 50 copies/mL or above, so undetectable means “less than 50”. There are tests in existence that can detect HIV when there are less than 50 copies present, but they are commonly used for research purposes only.

If an undetectable viral load is detectable again. Some experts believe that a viral load that goes from being undetectable to detectable is a possible sign of treatment failure. But the results of one viral load test showing this jump is nothing to panic about. You should repeat the test—it may simply be an error or nothing more than a temporary “blip.” If a second test confirms the results of the first test, it might be time to alter your regimen. If the blip is less than 400 copies, and only occurs once, this is not usually something to worry about. If virus is over 400 copies, however, or detectable on two tests in a row, this might be a sign that treatment is no longer working.
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Offline LeftyBowler300

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Re: Is there a light at the end of the tunnel?
« Reply #85 on: December 04, 2017, 01:57:14 pm »
WHOOOOOOOOO!!!!!!!!!!!!!


Got my most recent labs today.

Viral Load is officially <20 !!!!!!!
I was worried that my medicine wasn't working, but it's kicking butt!
To anyone reading this in the future and starting Genvoya: DO NOT TAKE IT WITH A MULTIVITAMIN.

My CD4's were only 56 (3%), but I'm the midst of a fun spar with a cold virus, so I knew my CD4's would be some big babies. My CD3's were also 300+ higher than last test, and my CD8's were 250+ higher (fightin dat cold)

My CBC was good. No surprises. A whopping 15 HGB (better than 11 at diagnosis  ;D), normal RBC, almost normal WBC, Globulin was 2 points higher than normal range, but whatever.

Time to go play basketball.
Apr 1, 2017 DX - CD4 8 , VL 820,000
OI's: Disseminated Histoplasmosis, Thrush, PCP
Apr 17, 2017 started Genvoya, Bactrim, Sporanox, Azitrhomycin
Jun 9, 2017 - CD4 42 (3%) , VL 100
Jul 17, 2017 - CD4 57 (4%) , VL 53
Sep 16, 2017 - CD4 57 (4%) , VL 130 - Ugh..
Oct 20, 2017 - CD4 63 (5%) , VL 100
Dec 1, 2017 - CD4 56 (3%) , VL <20
Mar 15, 2018 - CD4 73 (5%) , VL <20
Nov 5, 2018 - CD4 104 (7%), UD
Jan 26, 2019 diagnosed with HIV-associated DLBCL (lympoma) with 6cm mass near liver w/ abdominal fatty tissue involvement
6 rounds of RR-EPOCH
2 rounds of high dose methotrexate
(8 rounds of IV chemo total)
11 Lumbar punctures with intrathecal chemo
June 5, 2019 - Complete Response/Remission
Feb 20, 2020 - CD4 187, VL UD
Aug 2020 - CD4 247, VL UD
Stopped all prophylaxis
June 2021 - 2 years remission

Offline paintedroom

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  • Dx`d July 2016
Re: Is there a light at the end of the tunnel?
« Reply #86 on: December 05, 2017, 01:54:01 pm »
Delighted for you Lefty  :) Ride that wave all the way through christmas. 8)
Dx`d mid July 2016
8/8/2016 - CD4 50     VL 50,000
5/9/2016 -  CD4 150
13/9/2016  VL  undetectable.
March `17 - CD4 193   VL undetectable.
March  `18 CD4 214    VL undetectable
March 2019 CD4 325  VL UD
Genvoya - Changed to Biktarvy feb 2021

Offline Tonny2

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Re: Is there a light at the end of the tunnel?
« Reply #87 on: December 05, 2017, 02:12:19 pm »


         ojo       hello my ex PM blocker friend, congratulaciones amidgo, i'm very happy for you, now that your soldiers (cd4) have no hiv virus to fight, with time, they will replicate like bunnies...i can imagine how you might feel after all those bas numbers...wishing you the best, keep us posted please...hugs all the way to the basketball court,,,take care                                                                            ojo

Offline LeftyBowler300

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Re: Is there a light at the end of the tunnel?
« Reply #88 on: December 06, 2017, 09:15:04 pm »
Delighted for you Lefty  :) Ride that wave all the way through christmas. 8)
Thanks  8)


         ojo       hello my ex PM blocker friend, congratulaciones amidgo, i'm very happy for you, now that your soldiers (cd4) have no hiv virus to fight, with time, they will replicate like bunnies...i can imagine how you might feel after all those bas numbers...wishing you the best, keep us posted please...hugs all the way to the basketball court,,,take care                                                                            ojo

They can start replicating at annnnnnny time now  ;D
Seems like I have one of the slowest cd4 rises in the forums. Even 2Tcells rose faster.
Sucks to be me I guess. I’ll be under 100 forever.
« Last Edit: December 06, 2017, 09:22:27 pm by LeftyBowler300 »
Apr 1, 2017 DX - CD4 8 , VL 820,000
OI's: Disseminated Histoplasmosis, Thrush, PCP
Apr 17, 2017 started Genvoya, Bactrim, Sporanox, Azitrhomycin
Jun 9, 2017 - CD4 42 (3%) , VL 100
Jul 17, 2017 - CD4 57 (4%) , VL 53
Sep 16, 2017 - CD4 57 (4%) , VL 130 - Ugh..
Oct 20, 2017 - CD4 63 (5%) , VL 100
Dec 1, 2017 - CD4 56 (3%) , VL <20
Mar 15, 2018 - CD4 73 (5%) , VL <20
Nov 5, 2018 - CD4 104 (7%), UD
Jan 26, 2019 diagnosed with HIV-associated DLBCL (lympoma) with 6cm mass near liver w/ abdominal fatty tissue involvement
6 rounds of RR-EPOCH
2 rounds of high dose methotrexate
(8 rounds of IV chemo total)
11 Lumbar punctures with intrathecal chemo
June 5, 2019 - Complete Response/Remission
Feb 20, 2020 - CD4 187, VL UD
Aug 2020 - CD4 247, VL UD
Stopped all prophylaxis
June 2021 - 2 years remission

Offline Tonny2

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Re: Is there a light at the end of the tunnel?
« Reply #89 on: December 07, 2017, 04:37:02 pm »


        ojo       hello again lefty, i', sure you will be above 200 pretty soon, what it matters now it's that you are UD, if you knew how long it took me to get UD, and get over 200, i guess you will be happier to know that i was even worse than my buddy 2tcells, there for, worse than you, so, NO TE DESESPERES PEREZ, have patience and keep playing basketball and keep yoursels busy...please keep us posted...hugs amigo

Offline Wade

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Re: Is there a light at the end of the tunnel?
« Reply #90 on: December 09, 2017, 08:40:30 am »
Lefty...!!!!

Great news :)

Be sure to eat when you take your meds, Genvoya requires food you know ;)

Hugs,

Wade
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 You can read more about Transmission and Risks here:
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 HIV TasP
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 HIV prevention
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Offline LeftyBowler300

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Re: Is there a light at the end of the tunnel?
« Reply #91 on: December 10, 2017, 01:40:02 am »
Hey wade   ;D
I’ve gained 30 pounds since starting Genvoya. I’m eating like a pig!
Apr 1, 2017 DX - CD4 8 , VL 820,000
OI's: Disseminated Histoplasmosis, Thrush, PCP
Apr 17, 2017 started Genvoya, Bactrim, Sporanox, Azitrhomycin
Jun 9, 2017 - CD4 42 (3%) , VL 100
Jul 17, 2017 - CD4 57 (4%) , VL 53
Sep 16, 2017 - CD4 57 (4%) , VL 130 - Ugh..
Oct 20, 2017 - CD4 63 (5%) , VL 100
Dec 1, 2017 - CD4 56 (3%) , VL <20
Mar 15, 2018 - CD4 73 (5%) , VL <20
Nov 5, 2018 - CD4 104 (7%), UD
Jan 26, 2019 diagnosed with HIV-associated DLBCL (lympoma) with 6cm mass near liver w/ abdominal fatty tissue involvement
6 rounds of RR-EPOCH
2 rounds of high dose methotrexate
(8 rounds of IV chemo total)
11 Lumbar punctures with intrathecal chemo
June 5, 2019 - Complete Response/Remission
Feb 20, 2020 - CD4 187, VL UD
Aug 2020 - CD4 247, VL UD
Stopped all prophylaxis
June 2021 - 2 years remission

Offline Tonny2

  • Member
  • Posts: 2,924
Re: Is there a light at the end of the tunnel?
« Reply #92 on: December 10, 2017, 01:31:08 pm »


        ojo       hello lefty, you better keep going to p;ay basketball...i wish i could gain weight, i eat a lot and never gain weight, but if i don't eat, i lose weight very quickly...hugs my friend                                                                                 ojo

Offline JosephP

  • Member
  • Posts: 318
  • Keep looking FORWARD... Dx'd 8/10/2013...
Re: Is there a light at the end of the tunnel?
« Reply #93 on: December 13, 2017, 11:53:35 pm »
WHOOOOOOOOO!!!!!!!!!!!!!


Got my most recent labs today.

Viral Load is officially <20 !!!!!!!
I was worried that my medicine wasn't working, but it's kicking butt!
To anyone reading this in the future and starting Genvoya: DO NOT TAKE IT WITH A MULTIVITAMIN.

My CD4's were only 56 (3%), but I'm the midst of a fun spar with a cold virus, so I knew my CD4's would be some big babies. My CD3's were also 300+ higher than last test, and my CD8's were 250+ higher (fightin dat cold)

My CBC was good. No surprises. A whopping 15 HGB (better than 11 at diagnosis  ;D), normal RBC, almost normal WBC, Globulin was 2 points higher than normal range, but whatever.

Time to go play basketball.


Nice! Nice! Nice!! Happy for you... Perserverance pays off!! Dust that basket ball and give it hell!
Today January 20, 2020, I have taken 2378 pills of my ARV since first pill. This means 79 bottles of 30 pills of ARVs at an average of $3950 per bottle or $313,103 USD for my treatment. I have a compliance of 99.83% taking my meds and only .17% (or 4 pills) non-compliant. Of these four pills two I forgot completely, One I lost and one I didn't have with me while traveling! I became UD 3 months after treatment start   ***We are all dealing with this. And we will live long and productive lives!! AND, yes the Lord is my shepherd. Life is good... And thanks for the meds! ***

Offline LeftyBowler300

  • Member
  • Posts: 106
Re: Is there a light at the end of the tunnel?
« Reply #94 on: February 05, 2018, 05:26:41 pm »
I guess I’ll give a quick update. Hey everyone. It’s been a while!

Been sick almost all of January with a nasty bug that caused bronchitis. But most of my friends caught the same bug and it was just as bad for them if not worse, so I guess my immune system kicked its ass just as good as anyone else  ;)

Didn’t take any medicine for it besides an inhaler to help with wheezing and ate cough drops like candy. I guess my 56 CD4’s are Spartans.  ;D

Hope everyone else is handling the flu season well. *hugs*
Apr 1, 2017 DX - CD4 8 , VL 820,000
OI's: Disseminated Histoplasmosis, Thrush, PCP
Apr 17, 2017 started Genvoya, Bactrim, Sporanox, Azitrhomycin
Jun 9, 2017 - CD4 42 (3%) , VL 100
Jul 17, 2017 - CD4 57 (4%) , VL 53
Sep 16, 2017 - CD4 57 (4%) , VL 130 - Ugh..
Oct 20, 2017 - CD4 63 (5%) , VL 100
Dec 1, 2017 - CD4 56 (3%) , VL <20
Mar 15, 2018 - CD4 73 (5%) , VL <20
Nov 5, 2018 - CD4 104 (7%), UD
Jan 26, 2019 diagnosed with HIV-associated DLBCL (lympoma) with 6cm mass near liver w/ abdominal fatty tissue involvement
6 rounds of RR-EPOCH
2 rounds of high dose methotrexate
(8 rounds of IV chemo total)
11 Lumbar punctures with intrathecal chemo
June 5, 2019 - Complete Response/Remission
Feb 20, 2020 - CD4 187, VL UD
Aug 2020 - CD4 247, VL UD
Stopped all prophylaxis
June 2021 - 2 years remission

Offline Wade

  • Global Moderator
  • Member
  • Posts: 3,447
Re: Is there a light at the end of the tunnel?
« Reply #95 on: February 06, 2018, 08:15:46 am »
Hey there Lefty !

Good to hear from you, and sorry to hear you were sick.
The winter crud is everywhere, I went to my Drs appointment last week healthy and left with a nasty cold. I'm sure that's where I caught it, those places are full of sick people you know  ;D
Fool sitting next to me was sneezing and coughing all over me, wanted to hose his ass down with Lysol :o

Proof is in the pudding, your cd4s are kicking ass and glad you're feeling better ;)

Hugs,

Wade
HIV 101 - Basics
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Offline LeftyBowler300

  • Member
  • Posts: 106
Re: Is there a light at the end of the tunnel?
« Reply #96 on: March 20, 2018, 11:26:25 am »
Got my cd4 count test done a couple days ago. It’s at 73. I swear I have a case for being the slowest riser with a suppressed viral load... this is frustrating...
Apr 1, 2017 DX - CD4 8 , VL 820,000
OI's: Disseminated Histoplasmosis, Thrush, PCP
Apr 17, 2017 started Genvoya, Bactrim, Sporanox, Azitrhomycin
Jun 9, 2017 - CD4 42 (3%) , VL 100
Jul 17, 2017 - CD4 57 (4%) , VL 53
Sep 16, 2017 - CD4 57 (4%) , VL 130 - Ugh..
Oct 20, 2017 - CD4 63 (5%) , VL 100
Dec 1, 2017 - CD4 56 (3%) , VL <20
Mar 15, 2018 - CD4 73 (5%) , VL <20
Nov 5, 2018 - CD4 104 (7%), UD
Jan 26, 2019 diagnosed with HIV-associated DLBCL (lympoma) with 6cm mass near liver w/ abdominal fatty tissue involvement
6 rounds of RR-EPOCH
2 rounds of high dose methotrexate
(8 rounds of IV chemo total)
11 Lumbar punctures with intrathecal chemo
June 5, 2019 - Complete Response/Remission
Feb 20, 2020 - CD4 187, VL UD
Aug 2020 - CD4 247, VL UD
Stopped all prophylaxis
June 2021 - 2 years remission

Offline Tonny2

  • Member
  • Posts: 2,924
Re: Is there a light at the end of the tunnel?
« Reply #97 on: March 22, 2018, 01:32:55 pm »

          ojo      Hello my friend...I'm sorry you are feeling frustrated, trust me, I know how you feel, it happened to me, although, you should feel blessed that your trearment is working, in my case, I had to wait twelve years to become UD. I guess, you are just like our good friend 2tcells, it took him a while to get a good increase of "soldiers", but I guess, it is more impotant to be UD, than to have a good number of soldiers, I also know, that, it would be better to have both, VL and CD4 levels with good numbers...hang in there my friend, good things come to those who wait, just see 2tcells, he didn't get good numbers but he, became a father...sending you a big frustating busting hug (not sure if that sentence  makes sense) on your way...you will be fine, keep getting 300 games                                                               ojo

Offline Chel

  • Member
  • Posts: 13
  • Aloha!
Re: Is there a light at the end of the tunnel?
« Reply #98 on: March 23, 2018, 08:50:41 am »
Hey LeftyBowler300 Good morning!

I was reading about your history and you battle with CD4.
For my experience, CD4 usually takes time to rise. I also had ups and downs...
I was very anxious about that my doctor haven't asked me for CD4 tests anymore. He told me as my VL is controlled, CD4 is going to rise slowly.
Stay strong. We all are going to win the battle against this Virus. I'm sure.

Hugs from Brazil. :)

Michel

Chel :)

Offline terrymoore

  • Member
  • Posts: 497
Re: Is there a light at the end of the tunnel?
« Reply #99 on: November 21, 2021, 08:44:04 pm »
Hi,
No offense to OP, can you please remove me from this thread?

 


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