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Author Topic: Is there a light at the end of the tunnel?  (Read 28694 times)

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Offline LeftyBowler300

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Is there a light at the end of the tunnel?
« on: March 26, 2017, 08:13:45 am »
So I've had a headache, low grade fever (99.2-101), nausea and fatigue for about two weeks. I've had oral thrush, itchy legs and throat sores for about 2-3 months. My body feels like I got hit by a truck. I can't hold down much food, and I've lost probably 7-8 freshly gained pounds (I was working out and eating a lot before this attack).

I'm currently taking augmentin for what my PCP thought was diverticulitis (abdominal pain, nausea, belching, fever), but now I've realized it's most likely something worse.

The thrush tipped me off to go to Walgreens and get a OraQuick take home HIV test, even though thrush is commonly caused by antibiotics. I took it about 24 hours ago, and it was positive. My heart hit the floor, and I immediately ran to the bathroom to vomit. I told my partner while crying hysterically. He tried his best to comfort me. I told him to get tested. He did, and he's negative.

I have a hard time figuring out when I could have gotten infected, as my sexual encounters as of late are all low risk (giving oral).

My last high risk encounter (unprotected anal) was back in late 2012, so if that's when I got it then I'm scared to death because that means I've had it for four years. But, I followed up with the guy and he said he's negative and gets tested regularly (of course I understand that I'm trusting his word).

My last oral encounter was almost a year ago, but this guy is suspect because when we hooked up he had a facebook but now it seems as if he's dropped off the face of the earth.

So as much as I'm hoping this is symptoms of ARS, I'm fearing for much, much worse, like advanced stage

My hysterical borderline panic crying quickly turned to realizing how awful I'm feeling and that I need to step into action to confirm a diagnosis and start treatment.

It's the weekend, and clinics and the health department is closed until Monday.

I thought about going to the ER in hopes that I can speed up confirmatory testing, but I called them and they said they'd probably just help my symptoms and direct me to the health department when they open on Monday.

I know test results from the health department take about 7-10 days, so that means at least 7-10 more days of feeling like this before I'm confirmed and on treatment...

But the way I feel I'm honestly questioning if I have that much time... I can't eat much and I feel horrible.

I just need some support right now... and hopefully some similar stories of people who made it.. because I really don't want to die before I even get on treatment. What do I do?
« Last Edit: March 26, 2017, 08:23:49 am 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 Ptrk3

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Re: Is there a light at the end of the tunnel?
« Reply #1 on: March 26, 2017, 12:14:16 pm »
Since you did have an event of unprotected, receptive anal sex, you are at risk for potential HIV infection, so you will need to be tested for HIV antibodies (as you plan).

The OraQuick test is not conclusive, so you should not presume that it is accurate.

Symptoms are not a reliable indicator of HIV infection since symptoms, if they occur at all, vary widely among individuals.  Therefore, we don't assess them on these forums and you should not assess them, either.  Thrush, in fact, can be caused by a heavy regimen of antibiotics.

If it turns out that you are, in fact, HIV positive, you will be fine--even if you have been infected for several years.  Antiretroviral medication these days is nothing short of miraculous:  you are not dying and are not in the "late" stages of anything (other than, perhaps, your current anxiety over the matter).  Many people on these forums have survived single-digit CD4's and multiple opportunistic infections (I am one of those people).

You will live a long and healthy life.

For the time being, however, though I sure you are very anxious, you will simply have to wait for an HIV-antibody test and a subsequent confirmatory test. 

Continue to rely on this forum for ongoing support and guidance.
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Offline Jim Allen

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Re: Is there a light at the end of the tunnel?
« Reply #2 on: March 26, 2017, 12:18:55 pm »
Hi

Sorry to here you had a reactive result. Look if what you said is correct it's not ARS and could be anything making you sick, so go see your doctor and treat what is making you sick.

I agree with Patrick.

Look if you was indeed infected 5 years ago its not the end of the world and will be fine once you start treatment . That is of course if your follow up test indeed confirm your status we see plenty of false reactive results here so no need to panic and even if confirmed than still no need to panic.

Test and in the meantime treat what is making you ill.

Jim
HIV 101 - Everything you need to know
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Offline LeftyBowler300

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  • Posts: 102
Re: Is there a light at the end of the tunnel?
« Reply #3 on: April 06, 2017, 03:22:11 am »
Hi all,

I was diagnosed on 4/1 (5 days ago)
CD4 8, VL 800,000+

I was hospitalized for 6 days with histoplasmosis, and what I think they said was mild PCP.

I've been discharged due to fever going down and good vitals, but I still have the PICC line in for out patient IV antibiotic for the next 8 days.

I'm taking mepron, amphocetirin B and cefuroxime axetil (the amphocetrin is the only one through IV).

I haven't started ART yet because the doctor wanted to get these infections out of the way first.

But this treatment seems to be giving me very frequent diarrhea. I got tested for C. Diff. Which was negative. But I feel like I'm living on the toilet. I don't even want to go to the grocery store out of fear of urgently needing to find a toilet. I don't have the desire to eat much, and I get full/nauseous after very little. I'm losing weight.

Is this normal? Will it ever end? I know this is probably the hardest part, but it's just hard fighting through it. It's very stressful and scary.
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 #4 on: April 06, 2017, 03:57:48 am »
Hi

Sorry to hear you are not feeling the best and I hope you recover soon with the treatment.

Quote
But this treatment seems to be giving me very frequent diarrhea

Yeah I can image that, look I know you are feeling really rough at the moment and not having a very pleasant time at all (understatement I know) however the treatment is not going to be for ever so do keep that in mind, you just need to get through this hurdle.

You will get better and once you are and can start your HIV treatment and suppress that bug and get back to your life. I know its seem hard to Imagine but its the truth trust me.   

Wishing you all the best.

Jim

HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
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Read about PEP and PrEP here
PEP and PrEP

Offline LeftyBowler300

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  • Posts: 102
Re: Is there a light at the end of the tunnel?
« Reply #5 on: April 06, 2017, 04:02:09 am »
Thanks Jim,

I'm trying to hang in there. I just miss what well feels like.
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 harleymc

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Re: Is there a light at the end of the tunnel?
« Reply #6 on: April 06, 2017, 01:41:45 pm »
I'm sorry you are so crook at the moment. It will pass.

This stage of your life will give you a lot of strength in years to come. Any time you have a crisis, you'll look back at this time and say to your self, If I got through April 2017, then nothing is too big a challenge.

Hope you are feeling well soon.

Offline Hito

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Re: Is there a light at the end of the tunnel?
« Reply #7 on: April 06, 2017, 09:19:11 pm »
Hello Lefty.

I felt the exact same way when I was diagnosed. I wasn't sick like you were, but I am so happy that you are getting the care you need.

I remember be just as scared and helpless. I also remember what it was like to tell my partner at the time. I know it isn't much, but I want to let you know that things do get better and you will be OK.

Once you start treatment you will be surprised how soon it works. I reached undetectable within a month and I know that you will be there soon.

I am still a newbie myself within this community, but you will be OK. One day at a time.
June 24th-July 6th: Seroconversion
October 14th: Newly diagnosed
October 24th: CD4 283, VL unknown.
November 21st 2016: CD4 431 VL 40000~
February 1st 2017: Started Triumeq. No blood work taken.
February 27th 2017: Undetectable <40 CD4 390
May 1st 2017: Undetectable <40 CD4 472

Offline LeftyBowler300

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Re: Is there a light at the end of the tunnel?
« Reply #8 on: April 07, 2017, 08:34:01 am »
Thank you Harley and hito for your kind words.

This is a rough battle. I've lost over 12 pounds, down to 5'9 136. I just don't have the desire to eat, and any little food makes me nauseous. And I also know anything I eat right now has to come out the other end...

I'm also facing mental stresses. I look and feel like a walking zombie right now, and I'm embarrassed to be seen in public, especially by people who know me.

If there's anyone out there who's been through worse, your encouraging story would be super helpful right now.
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 harleymc

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Re: Is there a light at the end of the tunnel?
« Reply #9 on: April 08, 2017, 07:30:18 am »
The dreaded squirts, they are just the pits.

I fully empathise with you on that. Hopefully when all the antibiotics cease, your gut can get back to normal.

If you diarrhea is liquid rather than poorly formed I have a suggestion., this sounds counter intuitive but it helped me a bit. Try adding some dietary fibre. It regulates water in the gut.

Try mixing up a live yogurt with some water and fibre, swallow it as fast as you can, it's not real nice, but it may help.

Offline LeftyBowler300

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Re: Is there a light at the end of the tunnel?
« Reply #10 on: April 08, 2017, 07:38:21 am »
Hey Harley

I've been eating probiotic yogurt and taking an additional 2 probiotic pills per day.
My stomach still rumbles and tumbles like there's a water slide in my colon, but what comes out seems a tad easier to handle. I do have a fiber supplement that I might start taking though, since you mentioned it. I hope I'm not OD'ing on probiotics
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

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Re: Is there a light at the end of the tunnel?
« Reply #11 on: April 08, 2017, 08:32:01 am »
Hi Lefty,
I was in the hospital with PCP for 2 weeks in 95 so I know how shitty you feel.
The good news is your diarrhea will subside the same time as the PCP and you will feel tons better soon. The even better news is that the new meds are awesome and most have very little side affects if any.

You want to hear worse ... the original version of norvir was liquid and was refrigerated. It tasted like shit and to make matters worse it went through you like greased lightning.  Everyone carried spare underwear in those days  :)

Hope you feel better soon and start getting on with life as you once knew it.

Hugs, Wade

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
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 PEP and PrEP

Offline LeftyBowler300

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  • Posts: 102
Re: Is there a light at the end of the tunnel?
« Reply #12 on: April 08, 2017, 09:21:28 am »
Hey Wade,

Thanks for the encouragement. I'm sure PCP was super scary back then. I'm glad medicine has evolved.
It's good to know there are people with AIDS diagnosis in 95 still doing well. Especially since I know you guys had to suffer a whole lot more than us youngins have to. Little
things like that give me hope and keep me from breaking down.

I feel a little better today. The past few days for breakfast I could barely finish 1 pop tart. Today I was able to stuff down a pop tart and a yogurt. Baby steps I guess.
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

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Re: Is there a light at the end of the tunnel?
« Reply #13 on: April 08, 2017, 09:39:01 am »
Hey Lefty,

I remember eating a lot of peanut butter, it's full of protein and my gut tolerated it well
HIV 101 - Basics
 HIV 101
 You can read more about Transmission and Risks here:
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 You can read more about Testing here:
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 You can read more about Treatment-as-Prevention (TasP) here:
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 HIV prevention
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 PEP and PrEP

Offline LeftyBowler300

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Re: Is there a light at the end of the tunnel?
« Reply #14 on: April 14, 2017, 11:00:00 am »
Hey guys,

Today seems a bit of a rough day for me mentally.

I got the picc line removed yesterday (histoplasmosis treatment), and I start Genvoya/Bactrim Monday. Either the Ceftin or Ambisome gave me a pretty bad hives breakout that itches like crazy. My IDS thinks it's from the Ceftin, but I'm wondering why it's still there a couple days after I discontinued it.

I've been paranoid and checking my body constantly for any new moles or lumps or rashes. I know my body is vulnerable right now and I'm scared to death for things like melanoma, lymphoma etc...

This still feels like a nightmare I've yet to wake up from. I've been prescribed Ativan for anxiety, but I haven't really taken it much. I feel like I can breakdown and start sobbing at any moment.
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 terrymoore

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Re: Is there a light at the end of the tunnel?
« Reply #15 on: April 14, 2017, 12:05:53 pm »
Hi,
Sorry about your diagnosis and sorry you are feeling so lousy. I was lucky enough to get symptoms shortly after i was infected so i got tested and stated pretty soon after. I remember how crappy i felt - especially the runs and the lack of appetite etc. I am sure it is nothing compared to what you are going through. I was also very paranoid and over analyzed every single new spot, pimple, cough, sneeze, itch, twitch etc etc (read back in my posts - today it seems eons ago!
Drink lots of water, take your meds, get better. Today we are lucky - the doctors know what they are doing, the meds work, you will feel better soon enough. Keep your spirits up!

Offline Wade

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Re: Is there a light at the end of the tunnel?
« Reply #16 on: April 14, 2017, 12:06:27 pm »
Hey Lefty,
There is light at the end of the tunnel !
You're starting Genvoya on Monday, it's powerful with little or no side affects and you will feel better in no time short. I take that myself.

It takes a few days for things to be flushed out of your system and the itching should be subsiding. You are being treated for the things your body is vulnerable for and you are starting treatment in a few days. Try to relax, get some rest and for Pete's sake eat something  :)

Hugs, Wade
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:
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 You can read more about Treatment-as-Prevention (TasP) here:
 HIV TasP
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 HIV prevention
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 PEP and PrEP

Offline Wade

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Re: Is there a light at the end of the tunnel?
« Reply #17 on: April 14, 2017, 12:08:02 pm »
Terry and I posted at the same time  ;D
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Offline DANIELtakashi

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Re: Is there a light at the end of the tunnel?
« Reply #18 on: April 14, 2017, 08:04:07 pm »
Hi.

I was down with PCP and other things three years ago.
I cried saying my life was over but now l am back at work, leading a busy life here in this greater TOKYO.   Today l am going to a beachside city and enjoy the hot spring spa and good sushi.
You will get recovered when you start taking medicine.
Japanese National.
Language:  Japanese and English
Reside in TOKYO
Have visited 45 US states, DC, and Guam and Saipan.
Wishing to visit American Samoa someday.

Offline LeftyBowler300

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  • Posts: 102
Re: Is there a light at the end of the tunnel?
« Reply #19 on: April 15, 2017, 05:27:34 pm »
Thank you guys for your company and encouragement. I'm absorbing it all in right now, because I need all I can get to keep my sanity.

I started Sporanox today. It's a nasty liquid, and I read that I might need to take it for up to a year to prevent a histoplasmosis relapse, so I'm not too happy about it. (20ML twice a day on an empty stomach)


Terry -
the paranoia sucks.... how long did it take you to snap out of it? Did your vigilance catch anything early during that period or was it all in vain?

Wade -
I took your advice on the peanut butter. My stomach seems to handle it pretty well, although bread makes me nauseous right now for some reason, so I just take a spoonful or two of crunchy peanut butter by itself or eat it with saltines.
The hives are becoming less severe and itchy, thankfully.
When do you take your Genvoya? I'm trying to decide if I should take it in the morning with breakfast and risk dealing with side effects at work, or just take it after work around dinner time and risk insomnia.
I'm inconveniently returning back to work the same day I take my first pill, so I'm not sure what to expect.

Daniel -
glad you're recovered and living your life awesomely. I hope in a few years I can say the same. How long were you hospitalized?
« Last Edit: April 15, 2017, 05:30:49 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 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 #20 on: April 15, 2017, 11:09:01 pm »
H
I've been paranoid and checking my body constantly for any new moles or lumps or rashes. I know my body is vulnerable right now and I'm scared to death for things like melanoma, lymphoma etc...

This still feels like a nightmare I've yet to wake up from. I've been prescribed Ativan for anxiety, but I haven't really taken it much. I feel like I can breakdown and start sobbing at any moment.

Hang in there... I felt exactly the same way when diagnosed almost 4 years now... Yet... I am here.. I was really scared to the point that my ID doc said to me to stop reading everything that came across my eyes and her very encouraging words: "You are not dying of HIV. You are living with HIV". I still check.. And I still worry about new symptoms, new freckles, new lumps.. But it has become easier! You'll see how everything's gonna work out for you! Adhere to your meds. Genvoya is exceptionally mild in side effects. I, myself, am on it.
« Last Edit: April 15, 2017, 11:12:50 pm by JosephP »
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 #21 on: April 16, 2017, 03:50:16 pm »
Thanks Joseph,

When do you take your Genvoya?

I start taking it tomorrow (with Bactrim and Sporonox), and I'm trying to figure out the best routine before I take my first pill. I don't want to risk side effects at work (breakfast/lunch) but I also don't want insomnia (plenty of time to metabolize it before bed) which makes dinner time tricky.

Sporanox needs an empty stomach, Genvoya needs food.

I am determined for adherence, but I want it to be optimal and less stress as possible.
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 DANIELtakashi

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Re: Is there a light at the end of the tunnel?
« Reply #22 on: April 16, 2017, 07:12:34 pm »
Lefty,

Hi.
I was hospitalized for a month.
I couldn't eat anything for the first two weeks,  no appetite.

One local man with the same disease, 70 years old,  was down with PCP ten years ago and now he goes to the gym five days a week.   You will be all right.
Japanese National.
Language:  Japanese and English
Reside in TOKYO
Have visited 45 US states, DC, and Guam and Saipan.
Wishing to visit American Samoa someday.

Offline LeftyBowler300

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  • Posts: 102
Re: Is there a light at the end of the tunnel?
« Reply #23 on: April 17, 2017, 05:38:36 pm »
I took my first Genvoya today.

Something in that short time between taking the pill out of the bottle, and swallowing it down with water, caused reality to sink in full fledged.

This is the first time I've really had a hard cry since my diagnosis. My first cry was more of a panic cry. But this time, this cry was full of nothing but anguish, despair and shame.

It must have gone on for almost an hour, and I kept repeating over and over to myself "I don't want this. Why do I have to have this. Why me."

I can't help but feel like I'm less of a human. My confidence and self-worth are shot. I feel like a small fraction of who I used to be.

I guess I just gotta carry on...
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 harleymc

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Re: Is there a light at the end of the tunnel?
« Reply #24 on: April 17, 2017, 06:43:12 pm »
Sorry to hear you've been feeling psychologically rough around the edges.
I remember having those same feelings, but that was in 1985 and their were no treatments.

Anguish despair and shame... your mind is playing in some nasty territory.
Shame.... HIV is just a bit of dna in a lipid casing, it has no sense of morality. We get HIV if we are being fully human, we get it loving, being loved, seeking and giving pleasure, seeking or giving comfort. In a very small percentage of these very normal, very human exchanges an infection occurs. You can't undo the past. In time you may even welcome the changes you make in your life in response to the virus.

I'm not sure what the despair and anguish  is about. Is it about taking a pill once a day? That'll be the only major difference in your life. There is no reason that you can't do anything in your life that you would have done without HIV. You'll fall in love, maybe out of love, change careers, travel abroad, get a degree, even have children.

I know this is all new to you, but this could be a great time to see a clinical psychologist or a psychiatrist so you can get your thinking  and your moods onto an even keel that will set you up achieving your best out of life, and feeling happy while you do it.

Offline FES

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  • Posts: 24
  • Regain health and stay healthy for a long life!
Re: Is there a light at the end of the tunnel?
« Reply #25 on: April 17, 2017, 10:40:31 pm »
Lefty,

I am sorry to hear your story but I can truly relate to your situation.  This time last year I was in the battle of my life with Cryto Meningitis.  The thing is I did not have a clue that any of this was even happening to me at the time.  My partner  found me unresponsive on the couch one morning and has told me that I was actually talking to a little boy, a man and woman that where standing in the corner and at that point he realized I didn't have long before something bad would happen.  I would always talk about when caring for patients in ICU about how they would talk to others that where not there before they passed.  He took that experience and ran with it and me to the ER where I was diagnosed with AIDS CD$ 20, Cryto Meningitis, brain had already started herniating out of my skull.  The ER physician told him that I had approximately 12-24 hours at most before I would have passed and that there were still no guarantee that I would pull through. AT the time I was to unstable to go to the OR to receive the pressure to help control the brain herniation.  I was in ICU for 3 days before I could make it through surgery and when I came out it was all confirmed, that I I had AIDS / Crypto in my brain, blood, and bones.  I remained in the ICU for 14 days where I received AMP. B to try and get the crypto under control.  So fast forward here just a little after 17 days I was released home to start recovery which I still have no recollection to any of this happening to me, it was not until about a month and half out that I realized what was going on.  I was unable to walk because of the lose and hit my body had ring my illness and discovery.  My body lost 50lbs within the 17days that I was hospitalized, at home I had to craw if I was able to even manage that little bit of movement.  The only thing I could do for nutrition at the time and something you may try is ENSURE, yes it tool a little getting use to but it got me back to my feet with in a couple months (CHOCOLATE MY FAVORITE, lol).  The next few months where beyond anything that I could ever describe and can not even start to touch on how I felt.  Like you stated about feeling just plan ashamed, dirty, unwanted, untouchable, and that no one would ever want to be with me again including friends or family.

Fast forward once again, after being home for a couple months I started on Genvoya as well.  It has worked miracles for me, just make sure you eat something about 10 to min before you take it or within 10 min after for me to keep from getting nauseated.  My CD4 went from 20 to now 264, and my VL is undetectable.  Even with the results and everything I have been through and see the improvements daily I feel as though I should not be here that I would be better off if I would just pass on.  Guess what I am totally wrong.  My partner that took me to the hospital is now my spouse he has literally been my guardian Angel, Best Friend, Partner, Spouse, and Love.

Here is some of the things that I think you really need to get through this time.  A great health care team that will help you, support you, and be there for any need you may have.  IF you do not have an ID physician make sure you get referred to one that can watch and manage you close as well refer you to other specialist if needed.  AMP B did some serious damage to my body but it was take it or die and Im here so I got it, lol.  Try to stay positive even tough it is truly one of the hardest things to do at this point, I did not believe anything that anyone was telling me at the time.  Everyone was like it will get better trust me, I was like you have no idea what this is like.  Well they may have not actually experienced the situation themselves but has assisted many other in the past. If you have any problems affording your medication Genvoya drug company will assist you and it can all be completed on-line.

Sorry this is so long but this has actually helped me to talk about my experience.  I have jumped around a little but its hard still to keep somethings straight with my thought process. My hope is to return to work within the next 6months to a year, fingers crossed.  Keep your chin up and stay strong it will get better.

Huggs

Offline LeftyBowler300

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  • Posts: 102
Re: Is there a light at the end of the tunnel?
« Reply #26 on: April 18, 2017, 11:08:11 am »
FES,

Thank you so much for sharing your story. It's good to know the body can recover from some pretty harsh things. Crypto Meningitis sounds very scary.

I guess I got pretty lucky as far as OI's go, because I was able to return to work in 3 weeks. It helps that I have a cushy sit down job with very little physical stress.

I hope you keep recovering so you can work again!
Do you have a thread that you post in so I can follow your updates?


On a Genvoya note ~
Definitely felt the nausea this morning, but it slowly got better. That could have been the Genvoya or the bactrim. I have what I call the "foggy head" fatigue and a mild headache.  Still have the squirts, but meh whatever sadly I'm getting used to them. I expected worse side effects, so this isn't too bad.
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

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Re: Is there a light at the end of the tunnel?
« Reply #27 on: April 18, 2017, 11:18:01 am »
Hi Lefty,
Has anyone ever tested your stool for a parasite ?
HIV 101 - Basics
 HIV 101
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Offline LeftyBowler300

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  • Posts: 102
Re: Is there a light at the end of the tunnel?
« Reply #28 on: April 18, 2017, 05:35:47 pm »
Hi Lefty,
Has anyone ever tested your stool for a parasite ?

Hey Wade!

They took a stool sample while I was at the hospital (not sure what it was tested for), and another stool sample when I was going to the outpatient clinic almost 2 weeks ago. The second time they tested for C. Diff, which was negative.

But I looked at the side effects of the medicines I'm taking, and literally every single one of them can cause diarrhea (Mepron, Sporanox, Genvoya, Bactrim, Azithromycin), so I can take my pick when guessing which one(s) is/are the culprit. It seems to be worse in the morning, but starts to settle down a little after lunch time. I think it's the Sporanox I take on an empty stomach when I wake up, but my IDS seems to think otherwise.

I take a probiotic pill everyday and eat at least one cup of active culture yogurt, so hopefully things will work themselves out eventually.
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 #29 on: April 19, 2017, 07:01:48 am »
Not much to add but just wanted to say that, thankfully you will not be on this large combination of drugs for long, so you should see improvement with time and as you heal and can stop some of the meds. I know antibiotics always mess me up, and Bactrim (well the same class) was a particular unpleasant rough ride.

Hope you feel better soon.

Jim

HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
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You can read about HIV prevention here:
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Offline Wade

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Re: Is there a light at the end of the tunnel?
« Reply #30 on: April 19, 2017, 08:39:54 am »
Hey Wade!

They took a stool sample while I was at the hospital (not sure what it was tested for), and another stool sample when I was going to the outpatient clinic almost 2 weeks ago. The second time they tested for C. Diff, which was negative.

But I looked at the side effects of the medicines I'm taking, and literally every single one of them can cause diarrhea (Mepron, Sporanox, Genvoya, Bactrim, Azithromycin), so I can take my pick when guessing which one(s) is/are the culprit. It seems to be worse in the morning, but starts to settle down a little after lunch time. I think it's the Sporanox I take on an empty stomach when I wake up, but my IDS seems to think otherwise.

I take a probiotic pill everyday and eat at least one cup of active culture yogurt, so hopefully things will work themselves out eventually.

I glad they ruled that out, must be the antibiotics or everything combined as Jim mentioned.
You will probably be on the bactrim for a while, but what about the others ?
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
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 PEP and PrEP

Offline LeftyBowler300

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  • Posts: 102
Re: Is there a light at the end of the tunnel?
« Reply #31 on: April 19, 2017, 09:22:32 am »
Thanks Jim.

I really appreciate your kind words of encouragement. Especially when I'm down and feeling hopeless. It really does help me get through rocky parts and make me feel like I can still have a life after this hard part is over.

Wade -

I guess how long I take all these meds will depend on how quickly my CD4 can bounce back. Since it was only 8, and my VL up over 800k, I'm sure it might take some time. Hopefully It may help that I'm young (~30). I know I've read some posts on here where people's CD4 counts take years to recover, so I'm a little scared. I have an appointment on May 5 and they'll be giving me an update on the numbers.
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: 102
Re: Is there a light at the end of the tunnel?
« Reply #32 on: April 21, 2017, 05:44:45 pm »
Today is my 5th day of Genvoya
Nausea is better, diarrhea seems less frequent, but out of all 5 work days, today I felt the worst as far as general unwell feeling. I look paler, I have a mild headache, fatigue/tired. No fever, sore throat etc.. I was still able to work, but I felt "off" all day.

Obviously this could be any number of things, but I was wondering if anyone else taking Genvoya (or any combo drug) experienced something similar in the beginning
« Last Edit: April 21, 2017, 05:47:46 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 harleymc

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  • Posts: 1,460
Re: Is there a light at the end of the tunnel?
« Reply #33 on: April 22, 2017, 12:11:14 am »
I'm trying to get my head around where your head is at.

You're showing the same level of anxiety about your successful week at work where you were headachey one day as your time in hospital when you could have died.
You're shifting the goalposts from Can I survive the next day or two, to I've taken a pill for 5 days why isn't my health perfect?

genvoya isn't prescribed for headache.

Go and see a counselor to get your anxiety under control.

Offline hiv_rizzy

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  • Posts: 139
  • Male. 28. Positive
Re: Is there a light at the end of the tunnel?
« Reply #34 on: April 22, 2017, 12:44:24 am »
Hang in there. Things might look rough but you will pull through. I've been on Atripla for months and I am undetectable <20 . My cd4 was only 16 but viral load was just about 13,000k. It has been a slow recovery for my cd4 (currently at 137) but I know it will probably keep getting higher once the virus remains under control
Discovery! April 26, 2016
- Positive test confirmed by blood test
2016
-Viral load and CD4 unknown
-May 31st update - big delay at gov hosp lab
#July 9th late Results: CD4 16/ VL 13, 027
*Prescribed Atripla combo with Bactrim
#September CD4 97 / VL UD
2017
February CD4 137 / VL UD

Offline LeftyBowler300

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Re: Is there a light at the end of the tunnel?
« Reply #35 on: April 22, 2017, 09:20:31 am »

You're shifting the goalposts from Can I survive the next day or two, to I've taken a pill for 5 days why isn't my health perfect?

Yeah, and honestly I'll probably keep shifting the goalposts, just because I will be changing. The health goals I have next year won't be the same as the goals right now. Right now, I just want to survive the damage that's been done to my body and immune system. Next year I might have anxiety because my cd4 isn't jumping as high as I expected. It's all relative.

I think my battle right now is knowing that while my cd4 is a merely 8, my body is very vulnerable to many different things. I'm also taking several medicines that cause a wide range of side effects (including fever).

So any new cough, rumble, pimple, headache, paleness, bump, pain, or unwell feeling causes me to be high alert, because I don't know what's just a new and weird side effect or an OI showing its ugly face.
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 #36 on: April 22, 2017, 11:44:23 am »
Quote
Next year I might have anxiety because my cd4 isn't jumping as high as I expected.
I hope not as worrying about it is kind of pointless ;)

Quote
So any new cough, rumble, pimple, headache, paleness, bump, pain, or unwell feeling causes me to be high alert, because I don't know what's just a new and weird side effect or an OI showing its ugly face.

At the moment you have set yourself on red alert for this stuff and i can understand this, however look you are going to get sick in life just like any other person regardless of HIV status So coughs, rumbles, pimples, headaches, paleness, bumps, pains, or unwell feeling, bruises and scraps that's living.  ;)

If you're unsure about something and you feel unwell and i mean over the long term the next 10,20,30 or 40 years + that you are going to around, simply see a frontline doctor (GP/Primary) as you are going to get through this time now however its not much good if you spend the rest of your days freaking out or setting goals like CD4's that you can not influence, it not going to be much fun if you keep worrying long term if i am honest.

Wishing you all the best over the next few weeks as you adjust to treatment and settle in and I hope you feel better soon and that you soon (within a few months I hope) can drop the preventive treatments like Bactrim

Take it easy, try not to overthink or worry about thing. I know that easier said that done.

Jim
HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
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You can read about HIV prevention here:
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Read about PEP and PrEP here
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Offline LeftyBowler300

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  • Posts: 102
Re: Is there a light at the end of the tunnel?
« Reply #37 on: April 23, 2017, 07:14:28 pm »
Thanks Jim.


Can I post updates in this post, sort of like a blog of my experience? Or are there certain rules to follow?

Update:

day 7 of Genvoya
day 3 of headache (back/top of head, pain is in sync with heartbeat kinda like a stress/tension headache). tylenol helps.
day million of diarrhea (at least that's what it seems). Seems worse in the morning then settles as the day goes on. Probably because 4-8 episodes in the morning eliminate everything inside of me. I originally started taking probiotics and active culture yogurt in hopes to help the diarrhea, but now I just take them to replenish what keeps getting wiped out.
Appetite is better. Ate so much crappy food yesterday and got bad indegestion that kept me up all night.

Overall in a pretty good mood today. Company from my mom and partner helps. They've occasionally caught me googling information on my phone out of anxiety and told me to cut it out.


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 #38 on: April 23, 2017, 07:22:29 pm »
Thanks Jim.

Can I post updates in this post, sort of like a blog of my experience? Or are there certain rules to follow?

Post away. Several members maintain long running threads.  Just keep in mind unlike a blog people will reply to stuff.

Quote
They've occasionally caught me googling information on my phone out of anxiety and told me to cut it out.

Indeed, cut it out ;)

Jim
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Offline LeftyBowler300

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  • Posts: 102
Re: Is there a light at the end of the tunnel?
« Reply #39 on: May 03, 2017, 07:25:16 pm »
Just an Update:

The headaches are pretty much gone. Same with neck pain that I had for a while.

Diarrhea comes and goes. It's gotten a lot better since I decided to eat with the Sporanox. My bowel seems to have a habit of waking me up at 5 every morning, cramping, and telling me I need to get to the bathroom ASAP.
I go 2-3 times in the morning, usually within 30 minutes of each other. First one is well formed and healthy looking, then the succeeding bm(s) are progressively mushier.
I guess it's not too bad given the large amount of prophylaxis I'm on.

But enough about poop. (Sorry, but it's been the story of the past month and a half of my life, and the main cause of my stress).

I haven't missed a day of work since returning.

Overall I feel pretty good, except my eyes feel weird. I seem to be squinting a lot more lately, maybe due to sensitivity. They're also more watery than usual. Vision seems fine
Naturally I obsessively googled things like ocular lymphoma, crypto, cytomegalovirus, and other things that can kill me. I also found that allergies and staring at computer screens all day long (my job) can also cause this. I'll go with that for now  ;D.

Oh, and I've been eating like a pig the last 10 days. Mostly healthy stuff (yogurt, fruits, veggies, fish, chicken and whole grains) with a couple slices of butter cake, pizza, brisket, or some chips thrown in the mix. I also started drinking green tea.

I hope I stay feeling halfway decent. I'm scared to death of developing some sort of cancer while my immune system is so damaged. I've googled this obsessively too.
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: 2,573
Re: Is there a light at the end of the tunnel?
« Reply #40 on: May 03, 2017, 09:51:02 pm »


      OJO      HELLO THERE....I JUST WANT TO WELCOME TO THE FORUM...I READ THAT YOUR CD4=8, WAY TO LOW...I ALSO READ YOU ARE ON ANTIBIOTICS TO PREVENY OIs...WONDER IF YOU HAVE SEEN AN OPHTAMOLOGIST TO CHECK FOR CMV, BE AWARE FOR FLOATERS IN YOUR EYES, IF YOU SEE THEM, LET YOUR ID DOCTOR KNOW SO HE CAN REFERRER YOU TO AN OPHTAMOLOGIST, YOU MIGHT EVEN WANT TO ASK YOUR DOCTOR FOR MEDICATION TO PREVENT CMV...I'M GLAD YOU ARE FEELING BETTER. NOBODY SAID THAT LIVING WITH AIDS AND HIV WAS EASY, YOU HAVE TO BE STRONG. IF YOU FOLLOW YOUR ID DOCTORS INSTRUCTIONS YOU WILL BE FINE...YES, THERE IS LIGHT AT THE END OF THE TUNNEL, BUT, IN ORDER TO FIND IT, YOU REALLY NEED TO FIGHT HARD TO FIND IT...BEST WISHES...BY THE WAY, TAKE IT FROM SOMEONE WHO WAS IN YOUR SAME SITUATION 22 YEARS AGO, THERE WERE DIFFICULT TIMESM BUT I WANTED TO SEE THE LIGHT AT THE END OF THE TUNNEL AND FPIGHT TO FIND IT, I DID FIND IT AND I'M STILL HERE, SHARING MY EXPERIENCES WITH YOU AND OTHERS...KEEP FIGHTING, IT WILL HET BETTER...IF I MAY, PLEASE STOP GOOGLING, YOU WILL GO CRAZY WITH THINGS YOU WON'T UNDERSTAND...CYBER HUG ON YOUR WAY OJO

PS. HAVEN'T REAG THE WHOLE THREAD, JUST IN CASE I MISSED SOMETHING

Offline LeftyBowler300

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  • Posts: 102
Re: Is there a light at the end of the tunnel?
« Reply #41 on: May 04, 2017, 05:59:03 pm »
Hey Tonny,

Thank you so much for your response. I read a lot of your replies to various posts, and you seem like a warm and welcoming person.

I did get checked by an ophthalmologist. I had to look into bright lights, got dialated, tested my vision. Nothing out of the ordinary. "

Do you have your story on here? I like to read stories of people in my situation that have made it.
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 harleymc

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  • Posts: 1,460
Re: Is there a light at the end of the tunnel?
« Reply #42 on: May 04, 2017, 06:08:56 pm »
Hi, things sound like they are on the up and up except for your anxiety.

Your anxiety is crucifying you at the moment but it doesn't need to.
Go and get your anxiety treated, get an appointment with a psychologist  or do an online program like moodgym.

Offline Tonny2

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  • Posts: 2,573
Re: Is there a light at the end of the tunnel?
« Reply #43 on: May 05, 2017, 01:03:49 pm »
Hey Tonny,

Thank you so much for your response. I read a lot of your replies to various posts, and you seem like a warm and welcoming person.

I did get checked by an ophthalmologist. I had to look into bright lights, got dialated, tested my vision. Nothing out of the ordinary. "

Do you have your story on here? I like to read stories of people in my situation that have made it.

      OJO       HELLO AGAIN LEFTY...I'M GLAD THAT YOUR EYES ARE DOING FINE, JUST KEEP AN EYE (ojo) IN CASE YOU NOTICE "FLOATERS", IF YOU DO, SEE RHE EYE SPECIALIST, BETTER SAFE THAN SORRY...YOUR NUMBER ARE VERY LOW, BUT, WE HAVE ANOTHER MWMBWE @2CELLS, EVEN LOWER THAN YOU, YOU CAN READ HIS STORY TOO. YOU NEED TO TAKE YOUR MED/S AS PRESCRIBED AND TRY TO HAVE A GOOD ATTITUDE ABOUT LIFE...DO NOT GET ME WRONG, LIKE SOMEONE DID IT, I'M NOT SAYING TO SUCK IT UP, OR GET OVER IT, I GUESS NOBODY EVER GETS OVER THE FACT THAT WE ARE LIVING WITH A VIRUS, AT LEAST, IN 22 YEARS, I HAVEN'T GOTTEN OVER IT, BUT, YOU DECIDE HOW LONG YOU WANT TO MOURN, TO DIGEST THE NEWS, THEN, YOU DECIDE WHEN TO START LEARNING HOW TO LIVE WITH THIS VIRUS, THAT IT SEEMS, IT IS HERE TO STAY FOR A LONG TIME...I HAVEN'T READ YOUR WHOLE THREAD, I HAVE SOME LIMITATIONS DUE TO CMV RETINITIS, SO, FORGIVE ME IF I'M REAPITING WHAT SOMEBODY ELSE HAS SAID THE SAME.

OK, ABOUT MY STORU, YOU CAN SEE LOTS OF  OTHERS MEMBERS STORIES ON "LIVING WITH HIV"...IF YOU ARE INTERESTED IN MINE, I THINK I TOLD SOME OF MY STORY ON ONE THREAD "22 YEARS OF OVERTIME", JANUARY 11...THERE IS ANOTHER THREAD, "HOPE DIES LAST", ON APRIL 10...YOU MIGHT WANT TO READ "2TCELL" STORY, IT IS MORE RECENT, BACK IN THE DAYS, WE, LTS, HAD OTHER CHALLENGES.

ANYWAY...I AGREE WITH @HALEYMC, YOU DO NOT NEED MORE ANXIETY, STOP READING ABOUT WHAT "MIGHT" HAPPEN, JUST TRY TO RELAX, YOU DO NOT NEED MORE STRESS...IF SOMETHING WERE TO SHOW UP, THEN, YOU WILL WORRY ABOUT, AND TREAT WHATEVER IT MIGHT BE...WISHING YOU THE BEST, I HOPE YOU CAN UNDERSTAND MY BAD ENGLISH, IT SEEMS THAT THE MOST DIFFICULT IT GETS TO ME TO TYPE, I LOST CONCENTRATION WHAT I'M TYPING, SORRY IN ADVANCE...CYBER HUG, YOU WILL BE FINE. YOU ARE NOT ALONE ANYMORE                                                                                                                  OJO

Offline Tonny2

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  • Posts: 2,573
Re: Is there a light at the end of the tunnel?
« Reply #44 on: May 08, 2017, 08:44:37 pm »


          ojo       Hello @LeftyBowler300...I was wondering how you have been doing, I hope you are feeling more relax...I sent you a PM and for some readon you have me blocked...wishing you the best...more cyber hugs                                           ojo

Offline LeftyBowler300

  • Member
  • Posts: 102
Re: Is there a light at the end of the tunnel?
« Reply #45 on: May 09, 2017, 01:53:14 pm »
Hey Tonny!

I'm feeling a little better day by day.

My coworkers asked me if I'm feeling better, because I look better.

They said I got my color back (instead of being pale like I was when I first returned to work).

But one coworker said "You look less AIDS-Y now." Mind you, no one at work knows. They just know I was in the hospital for "something."
When he said that, I was a mixture of shocked and hurt. But I hid it and went along with it.

I'm sure remarks like that will sting for a while.

I'm not sure how you got blocked. I added you to my buddy list and you a PM. Hopefully that fixes it!
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: 2,573
Re: Is there a light at the end of the tunnel?
« Reply #46 on: May 09, 2017, 05:08:16 pm »


      ojo      HELLO LEFTY...I'M GLAD YOU ARE FEELING BETTER DAY BY DAY, PRETTY SOON YOU WILL BE BACK TO NORMAL...ABOUT THAT IGNORANT COWORKER, DON'T LET HIS COMMENT GET TO YOU, I'M SURE NOBODY KNOWS ABOUT YOUR STATUS.

OK, I WILL TRY TO SEND YOU A PM, JUST TO CHECK IF IT WORKS...AGAIN, HAPPY FOR YOU...HUGS                                                                                         ojo

Offline Orez

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  • Posts: 14
  • Remembering Everyday the Error of One Day
Re: Is there a light at the end of the tunnel?
« Reply #47 on: May 09, 2017, 06:41:17 pm »
Lefty,

Good to see you are bouncing back.  I was diagnosed a year ago with VL 8329600, yup that not a typo it was really that high.  For almost two months I was like in a dream staring out into a world that does not see me.  Periodically the emotion would swell in me and then the tears start flowing (never in public).  I Started with Stribild because at the time Genvoya was still new on the market.  Stribild and me did not get along.  Major headaches which causes extreme nausea which interferred with me taking my meds.  On my next visit to IDS I requested he switch me to Genvoya. Even though he did not regular prescribe it at the time he was in agreement.  Genvoya gave me mild headaches and constantly faint like I could pass out at anytime.  Yes the diarrhea comes and goes but it is less often then when I first started meds.  Now most of the side effects are either gone or unnoticeable. You have just started your treatment and you are already seeing improvement.  You will most like keep seeing improvements over time.

You are still 100% who you were before your diagnosis.  I felt much the same as you when I first found out.  One thing I know about me before and after is I still treat people around me with love and respect.  Since that has not changed I know I am still the same person I was before my diagnosis and so are you. I hung in there not knowing how I would and I am still going. You keep going, you will be fine.
2016 Feb 15 - CD4=700; VL=8329600; CD%=38.9
2016 May 04 - CD4=?;    VL=90;     CD%=?     Stribild
2016 Aug 27 - CD4=810; VL=80;    CD%=35.2 Stribild
2016 Dec 17 - CD4=772; VL=<20;  CD%=38.6 Genvoya
2017 Apr 15 - CD4=905;  VL=40;    CD%=43.1 Genvoya
2018 Jan 04 - CD4=1458; VL=<20; CD%=48.6 Genvoya
2018 July 07- CD4=1264; VL=<20; CD%=48.6 Genvoya

Offline LeftyBowler300

  • Member
  • Posts: 102
Re: Is there a light at the end of the tunnel?
« Reply #48 on: May 09, 2017, 07:20:35 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.
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 Orez

  • Member
  • Posts: 14
  • Remembering Everyday the Error of One Day
Re: Is there a light at the end of the tunnel?
« Reply #49 on: May 09, 2017, 08:07:45 pm »
Lefty,

Everyones body is different so you can't really compare with others how your CD4 will recover.  You had other issues at the time so that could be something to consider.  It may be for me that I eat half way healthy before and still do, not saying you don't.  You will have a better idea of what to expect ahead when you have follow up test and see your IDS.  Keep in mind the first follow up will let you know if it is working but the second follow up should for me was more helpful as I could see a positive trend.  Just the first two tests is hard to see what trend can be expected.  Just take your meds regularly and eat as healthy as you can (I could do better eating healthy).  Fluctuation is normal in results and as long as the trend itself keeps moving in a positive direction you will be fine.  I too was scared when first diagnosed that I would catch something because I didn't know anything about HIV outside it was bad.  I was so scared of catching something I didn't like people touching me and when people coughed I was furious when they did cover their mouth right.  I thought they would infect me for sure.  Well they didn't and I am still here.  I too was fearful and scared in the beginning but with working with my IDS and some self research (weeding out junk post on web) I am much more calm and stable mentally.  For me in the beginning HIV was a big deal now after a year on meds and knowledge gained HIV does not seem very big anymore.  I just went to my first group last week.  Please keep us updated on your progress.
2016 Feb 15 - CD4=700; VL=8329600; CD%=38.9
2016 May 04 - CD4=?;    VL=90;     CD%=?     Stribild
2016 Aug 27 - CD4=810; VL=80;    CD%=35.2 Stribild
2016 Dec 17 - CD4=772; VL=<20;  CD%=38.6 Genvoya
2017 Apr 15 - CD4=905;  VL=40;    CD%=43.1 Genvoya
2018 Jan 04 - CD4=1458; VL=<20; CD%=48.6 Genvoya
2018 July 07- CD4=1264; VL=<20; CD%=48.6 Genvoya

 


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