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Author Topic: New to the forum  (Read 21124 times)

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Offline JonJon

  • Member
  • Posts: 59
New to the forum
« on: October 29, 2015, 09:06:53 pm »
Hello everyone,

Just registered and glad I found this site.

About me:  Teacher overseas but returned in September to the USA to get treatment.  I will stay on medical leave the remainder of the year.  Not sure if I will go back overseas.

Diagnosed on August 18, 2015.  Couldn't start Hiv meds because I also have CMV retinitis and can't do both meds at same time.  I am on Valcyte 4 pills a day.  it has improved by ID and Opthamalogist want me to continue with VALCYTE until my CD is at least 200.

Numbers are bad:  CD is 20; VL is 101,000.  I guess I have aids.  so depressed.

I started triumeq a week ago plus Bactrim DS and Azithromycin.

I have no other issues with side effects, rashes, etc. but I get a fever about once a week.

Any one want to give some words of hope.  Usually I am very optimistic and my medical team is very encouraging, but today I am having a down day.

John
8/19/2015: Rec'd HIV positive result on WB test
10/1/2015: Diagnosed with AIDS, CMV retinitis, and MAC
10/1/2015:  CD4- 20 (1%)/ VL- 101,000
11/17/2015:  CD4- 20(1%)/ VL- 108
12/17/2015: CD4- 30 (2%)/ VL- 33
1/14/2016: CD4- 20 (1%)/ VL- 53
2/18/2016: CD4- 37 (2%)/ VL- 39
3/23/2016: CD4- 43 (2%)/VL- UD/clear of MAC
4/18/2016:  CD4- 54(3%)/ VL- UD
5/20/2016: CD4- 64(3%)/ VL- UD
12/10/2016:CD4- 113, VL- UD
4/15/2017: CD4- 144, VL- UD
7/1/2017: CD4- 166 (9%), VL- UD
12/10/2017: CD4- 228 (12%), VL-UD
7/6/2018: CD4- 281, VL- UD
12/12/2018: CD4- 419, VL- UD
7/6/2019: CD4- 458, VL- UD
7/8/2021: CD4- 414, VL- UD
2/21/2022: CD4- 484, VL- UD
8/22/2022: CD4- 602, VL- UD
3/14/2023: CD4- 608, VL- UD
9/8/2023: CD4- 592, VL- UD
3/14/2024: CD4- 733, VL- UD (on Triumeq since '15)

Offline Ptrk3

  • Global Moderator
  • Member
  • Posts: 2,792
Re: New to the forum
« Reply #1 on: October 29, 2015, 09:19:00 pm »
As you peruse this site, you will notice that many people had numbers like yours or worse.  I was diagnosed in hospital with PCP, CD4's of 9, and a VL of 111,000, so numbers similar to yours.  That was two years ago.  It does get better.  When you get your HIV meds, take them religiously and you will be fine.

It may take a while for your CD4's to rise, but your VL should fall to undetectable in a month or so, allowing your CD4's to recover.

You will be fine.  I wish you the best.
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 drewm

  • Member
  • Posts: 1,248
Re: New to the forum
« Reply #2 on: October 29, 2015, 09:23:03 pm »
Hi John,

Welcome to our little club. Sorry about your dx but glad you found your way here. Most folks here are survivors in one sense or another. My dx was in a hospital in 2010 with PCP pneumonia, cd4 count of 8 and a vl of 500,000. AIDS. That word still sounds unreal even as I say it to myself.

I was undetectable and CD4's had rebounded within 6 months on meds. At this point, seriously, HIV and AIDS are not the first or last things on my mind most days. This has truly become a manageable disease. Yes, there are labs to be done and doctors to see but it is more of a nuisance than anything else.

It is life changing in the sense that you can choose to manage it or let it manage you. It sounds cliche but it is the truth. I am on Triumeq also. Was on Bactrim for a year. Please do not ignore your mental health. Counseling is nothing to be ashamed of. If nothing else, it gives you a face to vent to.

Wishing you all the best. Please keep us posted as to your progress.
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

TRIUMEQ - VALTREX -  FLUOXETINE - FENOFIBRATE - PRAVASTATIN - CIALIS


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

Offline Tonny2

  • Member
  • Posts: 3,077
Re: New to the forum
« Reply #3 on: October 29, 2015, 09:56:00 pm »
Hello everyone,

Just registered and glad I found this site.

About me:  Teacher overseas but returned in September to the USA to get treatment.  I will stay on medical leave the remainder of the year.  Not sure if I will go back overseas.

Diagnosed on August 18, 2015.  Couldn't start Hiv meds because I also have CMV retinitis and can't do both meds at same time.  I am on Valcyte 4 pills a day.  it has improved by ID and Opthamalogist want me to continue with VALCYTE until my CD is at least 200.

Numbers are bad:  CD is 20; VL is 101,000.  I guess I have aids.  so depressed.

I started triumeq a week ago plus Bactrim DS and Azithromycin.

I have no other issues with side effects, rashes, etc. but I get a fever about once a week.

Any one want to give some words of hope.  Usually I am very optimistic and my medical team is very encouraging, but today I am having a down day.

John

      ojo      Hello jonjon...welcome...what a coincidence, I was dx'd in 1994 with a cd4=20, just like you...I did have ritinitis cmv, what were your symptoms?, is the VALCYTE helping?...as soon as you start taking meds, you will see a decrease onn your VL and hopefully an increase of your cd4...yes, you have aids, but thankfully, meds are great and you will be back over 200 soon...may I ask what dosage of azytromycin you are on?...would you mind telling me more about your CMV retinitis?...you will be fine...hugs            ojo

Offline JonJon

  • Member
  • Posts: 59
Re: New to the forum
« Reply #4 on: October 29, 2015, 10:45:47 pm »
Tonny,

My CMV retinitis started around April/May of 2015.  I noticed I had "floaters" in my left eye or small black dots and sometimes cobweb like images and then my right eye got them.  It doesn't hurt and my vision is still near 20/20.  I had no idea these floaters were related to HIV because usually they are not but in my case it was.  Then in summer 2015 I noticed I lost some peripheral vision in my left eye. I can still drive but I must always turn my head when making lane changes and turns....cannot rely on mirrors alone.   Again I thought it would go away....so when I was diagnosed with HIV on Aug 2015 I returned to the USA and fortunately I have great insurance so I have a team of a primary care doctor, HIV doctor, opthamalogist, and therapist.  The opthamalogist gave me the bad news....I will never forget his words:  "John, you have a very very serious disease called CMV which could lead to a retinal detachment and possibly blindness.  We must start treatment immediately."  I thought my world ended. So he put me on Valcyte--a small pill---4 per day.  Two weeks later on a follow up he says that there has been great improvement in both eyes and it looks good but there are still some areas where there is cmv so I must continue with valcyte until my cd4 gets to 200.  Unfortunately, peripheral vision will never come back but I can compensate....i don't have tunnel vision, and it is mild.  The floaters have decreased.

So my drug regimen is Triumeq (just started a week ago...a monster pill!); Valcyte, Bactrim, and Azithromycin.  I take 2 Azimthromycin once a week.

Thanks for asking....the support on here is really important to me.

John
8/19/2015: Rec'd HIV positive result on WB test
10/1/2015: Diagnosed with AIDS, CMV retinitis, and MAC
10/1/2015:  CD4- 20 (1%)/ VL- 101,000
11/17/2015:  CD4- 20(1%)/ VL- 108
12/17/2015: CD4- 30 (2%)/ VL- 33
1/14/2016: CD4- 20 (1%)/ VL- 53
2/18/2016: CD4- 37 (2%)/ VL- 39
3/23/2016: CD4- 43 (2%)/VL- UD/clear of MAC
4/18/2016:  CD4- 54(3%)/ VL- UD
5/20/2016: CD4- 64(3%)/ VL- UD
12/10/2016:CD4- 113, VL- UD
4/15/2017: CD4- 144, VL- UD
7/1/2017: CD4- 166 (9%), VL- UD
12/10/2017: CD4- 228 (12%), VL-UD
7/6/2018: CD4- 281, VL- UD
12/12/2018: CD4- 419, VL- UD
7/6/2019: CD4- 458, VL- UD
7/8/2021: CD4- 414, VL- UD
2/21/2022: CD4- 484, VL- UD
8/22/2022: CD4- 602, VL- UD
3/14/2023: CD4- 608, VL- UD
9/8/2023: CD4- 592, VL- UD
3/14/2024: CD4- 733, VL- UD (on Triumeq since '15)

Offline tednlou2

  • Member
  • Posts: 5,730
Re: New to the forum
« Reply #5 on: October 29, 2015, 11:26:25 pm »
John,

Just wanted to welcome you to the forums.  I'm sorry to hear about the eye issues.  I hope that gets all cleared up and you don't have further issues.  I can't imagine being told that; it would be so scary to think of possibly going blind.  The good thing is you got treatment and many make a full recovery, on the CMV issue.

Keep in touch.  I look forward to getting to know you.

Ted

Offline Tonny2

  • Member
  • Posts: 3,077
Re: New to the forum
« Reply #6 on: October 30, 2015, 01:17:58 pm »
Tonny,

My CMV retinitis started around April/May of 2015.  I noticed I had "floaters" in my left eye or small black dots and sometimes cobweb like images and then my right eye got them.  It doesn't hurt and my vision is still near 20/20.  I had no idea these floaters were related to HIV because usually they are not but in my case it was.  Then in summer 2015 I noticed I lost some peripheral vision in my left eye. I can still drive but I must always turn my head when making lane changes and turns....cannot rely on mirrors alone.   Again I thought it would go away....so when I was diagnosed with HIV on Aug 2015 I returned to the USA and fortunately I have great insurance so I have a team of a primary care doctor, HIV doctor, opthamalogist, and therapist.  The opthamalogist gave me the bad news....I will never forget his words:  "John, you have a very very serious disease called CMV which could lead to a retinal detachment and possibly blindness.  We must start treatment immediately."  I thought my world ended. So he put me on Valcyte--a small pill---4 per day.  Two weeks later on a follow up he says that there has been great improvement in both eyes and it looks good but there are still some areas where there is cmv so I must continue with valcyte until my cd4 gets to 200.  Unfortunately, peripheral vision will never come back but I can compensate....i don't have tunnel vision, and it is mild.  The floaters have decreased.

So my drug regimen is Triumeq (just started a week ago...a monster pill!); Valcyte, Bactrim, and Azithromycin.  I take 2 Azimthromycin once a week.

Thanks for asking....the support on here is really important to me.

John

                 ojo        Hello Jonh, I'm sorry about your CMV, it's a bitch, I dealt with it well, I'm still dealing with it because it left me almost blind, I do have tunnel vission on my left eye, my right eye is blind after a bad surgery (retinal detachment), the surgeon tore a pice up and the retina fell again...I'm glad the Valcyte is working, make sure that you are the only one who handle the pill, just follow the instructions,...I hope you med start kicking right away,, so your cd4 increases rapidly, like I said, CMV is difficult to treat, if you keep having problems with it, there is another drug called VESTIDE, tho, this one is via IV, I guess your doctor will know it, but now you know it too...also, there are some implants (VITRASERT) it's a little capsule with medication, thhis capsule is implantes in your eye, by your retiina, so the medication goes straight to the retina, judt in case the CMV doesn't stop giving you problems...but I'm glad you said its is working for you (the valvyte)...I will keep my fingers, even my eyes crossed, so your soldiers start improving soon...best of luck...hugs                                                      ojo

Offline JonJon

  • Member
  • Posts: 59
Re: New to the forum
« Reply #7 on: October 30, 2015, 01:30:57 pm »
Tonny,
Thanks for the words of encouragement.  Yes, my ophtamalogist mentioned how before the pill VALCYTE they used an IV of the same drug or an implant.  He did not want me to that route since I have been improving with the VALCYTE.  I have a follow up appointment next Thursday to check the CMV.

Sorry to hear about your eye conditions.  I do have some loss of peripheral vision but nothing else.  Can you still drive with your eye condition?

John
8/19/2015: Rec'd HIV positive result on WB test
10/1/2015: Diagnosed with AIDS, CMV retinitis, and MAC
10/1/2015:  CD4- 20 (1%)/ VL- 101,000
11/17/2015:  CD4- 20(1%)/ VL- 108
12/17/2015: CD4- 30 (2%)/ VL- 33
1/14/2016: CD4- 20 (1%)/ VL- 53
2/18/2016: CD4- 37 (2%)/ VL- 39
3/23/2016: CD4- 43 (2%)/VL- UD/clear of MAC
4/18/2016:  CD4- 54(3%)/ VL- UD
5/20/2016: CD4- 64(3%)/ VL- UD
12/10/2016:CD4- 113, VL- UD
4/15/2017: CD4- 144, VL- UD
7/1/2017: CD4- 166 (9%), VL- UD
12/10/2017: CD4- 228 (12%), VL-UD
7/6/2018: CD4- 281, VL- UD
12/12/2018: CD4- 419, VL- UD
7/6/2019: CD4- 458, VL- UD
7/8/2021: CD4- 414, VL- UD
2/21/2022: CD4- 484, VL- UD
8/22/2022: CD4- 602, VL- UD
3/14/2023: CD4- 608, VL- UD
9/8/2023: CD4- 592, VL- UD
3/14/2024: CD4- 733, VL- UD (on Triumeq since '15)

Offline Tonny2

  • Member
  • Posts: 3,077
Re: New to the forum
« Reply #8 on: October 30, 2015, 03:32:32 pm »
Tonny,
Thanks for the words of encouragement.  Yes, my ophtamalogist mentioned how before the pill VALCYTE they used an IV of the same drug or an implant.  He did not want me to that route since I have been improving with the VALCYTE.  I have a follow up appointment next Thursday to check the CMV.

Sorry to hear about your eye conditions.  I do have some loss of peripheral vision but nothing else.  Can you still drive with your eye condition?

John
       ojo      Hello jonjon...I'm glad you are improving with just the VALCYTE, in my case, I lived with AIDS for almost six years, when I was dx'd with cd4=20, I was addmited to the hospital with PCP, this was in November 94, in January 95 started treatment for hiv, having treatment failluere for almost six years, tho, I started having floaters around 1997, two years later, started taking gancyclovir, started having retinal detachments, first one eye, then in both, I can't even remember have many surgeries I has, but they were like three in each eye plus the implantation and injections directly in my eye ball, ugh!!!, but, like I told you in my previous reply, I lost my right eye's retina, so, I'm blind in the eye, and in my left eye, I have tunnel vision, and my cornea is damaged (another doctor mistake), so I see everything foggy, blurry,...to answer your question, no, I do not drive anymore, I kept trying until I went to renewed my driver's license, I didn't pass the test (vision), what I got was a handiccap card, no driver's license, lol, now it is funny, but then, I felt awful, no car, no freedom...feel free to PM if you need more info...best of luck...hugs              ojo

Offline Andy Velez

  • Global Moderator
  • Member
  • Posts: 34,126
Re: New to the forum
« Reply #9 on: November 01, 2015, 10:05:43 am »
Hi Jonjon,

Glad to see you are already experiencing the knowledge and generous spirit of other members.  You're dealing with challenging issues and doing very well.  It's important to have support so keep in mind you are always welcome here to ask questions and to discuss anything that's on your mind.

Welcome.

Andy Velez

Offline Peterdenmark

  • Member
  • Posts: 81
Re: New to the forum
« Reply #10 on: December 12, 2015, 02:42:47 am »
Welcome, from small Denmark :)

I do understand u are worried, and the AIDS diagnosis are a severe one.
But please remember that soon you will ONLY have hiv.

I was very sick when i was first diagnosed.
Cd4 zero, vl Millions.

The doctors didnt put me on any hivmeds - because I had so many infections, that needed to be treated first.(TB, pnemonia, some kind of skincancer etc etc)I was 5 weeks at intensive care.

After about 4 weeks the professors started my hiv drugs.
3 months after that my cd 4 count was 3, and vl about 500.000
I was starting to feel much better. Only the combo of meds was very tough( 6 months of strong TB meds, bactrim and hiv meds)

After 3 months cd4 count was 120, and even more important vl was now zero  ;D
Today my number are stable cd 4 between 700-800, vl always UD.

Having hiv poz status  today, is for me personally not important anymore. I dont even think that much about it anymore. I just take 2 tablets a day(EVERY DAY) and thats it.

I take care of my loving and wonderfull family - I have my normal problems in my live( same everyone else) but I really appreciate my life, and the only thing I hate about our disease are the TABU.

We need to speak to people about it, and not hide. We have done nothing wrong.

U are getting very good treatmemt. Soon u will be UD, and your cd4 will start rise.
AIDS will go away, and U will ONLY have HIV.
Yr life have changed forever though, but U dont die of hiv, u will get old and die with high cd4 of old age.(just take the meds)

I wish u all the best  ;)

Hugs and love
Peder

Offline Tonny2

  • Member
  • Posts: 3,077
Re: New to the forum
« Reply #11 on: December 12, 2015, 03:45:33 pm »
Welcome, from small Denmark :)

I do understand u are worried, and the AIDS diagnosis are a severe one.
But please remember that soon you will ONLY have hiv.

I was very sick when i was first diagnosed.
Cd4 zero, vl Millions.

The doctors didnt put me on any hivmeds - because I had so many infections, that needed to be treated first.(TB, pnemonia, some kind of skincancer etc etc)I was 5 weeks at intensive care.

After about 4 weeks the professors started my hiv drugs.
3 months after that my cd 4 count was 3, and vl about 500.000
I was starting to feel much better. Only the combo of meds was very tough( 6 months of strong TB meds, bactrim and hiv meds)

After 3 months cd4 count was 120, and even more important vl was now zero  ;D
Today my number are stable cd 4 between 700-800, vl always UD.

Having hiv poz status  today, is for me personally not important anymore. I dont even think that much about it anymore. I just take 2 tablets a day(EVERY DAY) and thats it.

I take care of my loving and wonderfull family - I have my normal problems in my live( same everyone else) but I really appreciate my life, and the only thing I hate about our disease are the TABU.

We need to speak to people about it, and not hide. We have done nothing wrong.

U are getting very good treatmemt. Soon u will be UD, and your cd4 will start rise.
AIDS will go away, and U will ONLY have HIV.
Yr life have changed forever though, but U dont die of hiv, u will get old and die with high cd4 of old age.(just take the meds)

I wish u all the best  ;)

Hugs and love
Peder

        ojo      hej min ven    Thanks buddy for the replying...I love u, I knew, as always, you will inspire a lot of newbies (I hate this word, lol)...I hope they feel the ssame, I feel inspire for ur words eventhough I'm an old timer, and old fart too...love on ur way minven                                                                                      ojo

Offline JonJon

  • Member
  • Posts: 59
Re: New to the forum
« Reply #12 on: December 12, 2015, 06:02:31 pm »
Thank you for the inspiring thoughts and words Peter!  Seriously, reading your story gives me hope as well as Tonny2 and his enthusiasm for life and optiimism.   I hate the label AIDS, which my HIV doc and GP don't use, but I know with my crappy numbers it is AIDS and I hope one day I will be able to just say I have HIV and be only on Triumeq.  At the moment, I take a host of many antibiotics for CMV and MAC.  Surprisingly I have had minimal side effects from all these drugs, and I am not feeling "sick."  Most importantly, my metabolism has recently changed  and I am rapidly gaining weight which I am thrilled about....now at 135lbs.  I was at 120-125 a few months ago which is a drastic change from my normal mid 140 weight.  My weight loss was so noticeable to every one who knows me, so I knew I was sick and like a  dummy I waited too long to get tested.  Anyways, I am looking forward to better health and staying optimistic.

My next lab visit is Dec 17.  Already my VL dropped from 101,000 to 108!  Yeah!  But the CD4 remains very very low....20.  So I am hoping to see some gain in CD4 and and UD VL.  That would be a nice Christmas present for me.

Thanks once again for all your support and this forum.

John
8/19/2015: Rec'd HIV positive result on WB test
10/1/2015: Diagnosed with AIDS, CMV retinitis, and MAC
10/1/2015:  CD4- 20 (1%)/ VL- 101,000
11/17/2015:  CD4- 20(1%)/ VL- 108
12/17/2015: CD4- 30 (2%)/ VL- 33
1/14/2016: CD4- 20 (1%)/ VL- 53
2/18/2016: CD4- 37 (2%)/ VL- 39
3/23/2016: CD4- 43 (2%)/VL- UD/clear of MAC
4/18/2016:  CD4- 54(3%)/ VL- UD
5/20/2016: CD4- 64(3%)/ VL- UD
12/10/2016:CD4- 113, VL- UD
4/15/2017: CD4- 144, VL- UD
7/1/2017: CD4- 166 (9%), VL- UD
12/10/2017: CD4- 228 (12%), VL-UD
7/6/2018: CD4- 281, VL- UD
12/12/2018: CD4- 419, VL- UD
7/6/2019: CD4- 458, VL- UD
7/8/2021: CD4- 414, VL- UD
2/21/2022: CD4- 484, VL- UD
8/22/2022: CD4- 602, VL- UD
3/14/2023: CD4- 608, VL- UD
9/8/2023: CD4- 592, VL- UD
3/14/2024: CD4- 733, VL- UD (on Triumeq since '15)

Offline Mightysure

  • Member
  • Posts: 449
Re: New to the forum
« Reply #13 on: December 12, 2015, 07:42:45 pm »
Hey JonJon,
Please don't be discouraged. I know things don't seem too well right now, but you're in the U.S. now and we have some of the best treatment in the world. You've had minimal side effects from your medicine because there have been so many improvements in medication.  I know some of the horror stories of those who went through this back in the 80's and 90's still lurk around, but I guess we don't realize how much things have improved until we experience for ourselves unfortunately. It will only get better from here, I promise. 
If you ever get the time, look for the user "2tcells".  Yes, they chose that screen name because when they were diagnosed, their CD4 was 2.  After almost 2 years of sticking with treatments, their CD4 is above 200 now.  But look at their posts and follow their story.  It's very inspiring.

Offline JonJon

  • Member
  • Posts: 59
Re: New to the forum
« Reply #14 on: December 12, 2015, 09:49:11 pm »
Thanks for the words of encouragement Mightysure.  I feel very fortunate and lucky that I have excellent medical coverage and top notch doctors.  I am seeing lots of docs:  GP, HIV specialist, opthamalogist, and now a dermatologist (recently noticed that my angular chelitis on the corners of my mouth aren't going away even with thrush gone....in the scheme of things it is not so serious, but I am attacking every single health issue and I just don't like the way it looks...vanity...lol).

I also see a therapist/counselor every other week.  As I mentioned before, the whole HIV thing has been more a psychological/mental thing than physical as of late I am feeling great and don't "look sick" like I did just a few months ago.

I have been following the posts 2tcells and others in similar situations.  I know we all different issues and everyone's body reacts differently to this disease but hearing the stories helps me put things in perspective.

Thank you all for contributing to this forum.

John
8/19/2015: Rec'd HIV positive result on WB test
10/1/2015: Diagnosed with AIDS, CMV retinitis, and MAC
10/1/2015:  CD4- 20 (1%)/ VL- 101,000
11/17/2015:  CD4- 20(1%)/ VL- 108
12/17/2015: CD4- 30 (2%)/ VL- 33
1/14/2016: CD4- 20 (1%)/ VL- 53
2/18/2016: CD4- 37 (2%)/ VL- 39
3/23/2016: CD4- 43 (2%)/VL- UD/clear of MAC
4/18/2016:  CD4- 54(3%)/ VL- UD
5/20/2016: CD4- 64(3%)/ VL- UD
12/10/2016:CD4- 113, VL- UD
4/15/2017: CD4- 144, VL- UD
7/1/2017: CD4- 166 (9%), VL- UD
12/10/2017: CD4- 228 (12%), VL-UD
7/6/2018: CD4- 281, VL- UD
12/12/2018: CD4- 419, VL- UD
7/6/2019: CD4- 458, VL- UD
7/8/2021: CD4- 414, VL- UD
2/21/2022: CD4- 484, VL- UD
8/22/2022: CD4- 602, VL- UD
3/14/2023: CD4- 608, VL- UD
9/8/2023: CD4- 592, VL- UD
3/14/2024: CD4- 733, VL- UD (on Triumeq since '15)

Offline TheNormalLife

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  • Rules have changed; giving up is never an option
Re: New to the forum
« Reply #15 on: December 14, 2015, 09:18:18 pm »
Hey JonJon:

Welcome onboard the funship! As you can already see and feel there is a lot of stigma related to HIV; most of it inherited from the dark early years, but also there are plenty of good stories out there. I personally love reading the good stuff from darlings like Tonny2, Jeff, Ted, Andy, Mecch and all the other old farts. For us the new kids, there is certainly hope.

Today, yet chronic, HIV it is very manageable and now we are blessed to live a full normal life expectancy (with very little efforts). Thumbs up for you and your good spirits and attitude. Also, it is great that you are occasionally talking to a therapist, they are great orienting our thoughts and emotions.

Warm hugs from south of the border.

Ray.
09/14 Conversion
12/14 Diagnosed
12/14 CD4-6; VL-4245 (wrong CD4 test)
01/15 CD4-530 (pheeew)
01/15 CD4-755
03/15 CD4-545; VL-14401
04/15 CD4-623; VL-4531
04/15 Truvada/Efavirenz
07/15 CD4-595; VL-UD
08/15 CD4-763; VL-UD
11/15 CD4-581; VL-UD
03/16 CD4-523; VL-UD
07/16 CD4-655; VL-UD
09/16 CD4-820; VL-UD
03/17 CD4-544; VL-UD
03/17 CD4-669; VL-UD

Offline Tonny2

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Re: New to the forum
« Reply #16 on: December 14, 2015, 11:01:42 pm »
but also there are plenty of good stories out there. I personally love reading the good stuff from darlings like Tonny2, Jeff, Ted, Andy, Mecch and all the other old farts. For us the new kids, there is certainly hope.

Today, yet chronic, HIV it is very manageable and now we are blessed to live a full normal life expectancy (with very little efforts). Thumbs up for you and your good spirits and attitude. Also, it is great that you are occasionally talking to a therapist, they are great orienting our thoughts and emotions.

Warm hugs from south of the border.

Ray.

        ojo      @thenormallife, mondrigo, haahah, fortunally, for all your newbies and not so newbies, (normallife, hahah), all you will get to be like us old farts, as long as you take your meds as you are order to do it...my buddym the one whom called me old fart, if those are my friends, I guess, I don't need enemies, hahah, yes, its for you thenormallife, hahah,this virus has become a manegable virus, tho, we do have to be aware, as everybody should be, negative and positive, about any changes in our bodies, if you see something different, a bump, limph node swallon, etc, etc, let your doctor know, so, I hope to see you all become old farts like us, at least, like me, because I'm an old fart with 21 years taking meds and everyting (organs) are working normally, even, "aquellito", (penis) working normally, with so many medications I was hoping at least it would grow a bit more, but, no, is still the same, hahahah, just a joke, do not get offended...hugs to everyone...jon jon, keep an eye on your eyes, thats is my main concern, and you will be UD on your next blood work results, and please, do not worry if you don't get a good reading on your cd4 level, as a matter of fact, I will prefer that your cd4 would  go up little by lettle, instead of a big jump in your cd4 levels...hugx2u                                                                                                                                                                                 mmmmmm                                                                                                                  ojo

Offline JonJon

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Re: New to the forum
« Reply #17 on: December 15, 2015, 09:27:02 am »
Tonny2 and others,

I see my HIV doc this Thursday to get my lab results for Cd4/VL, so  I am eager to find out the numbers, but now I have another health concern.  Since Sunday, I have had a low grade fever and sometimes chills.  I take Tylenol and it helps but the fever keeps coming back.  I already was hospitalized once in mid October for very high fever and terrible chills....blood cultures at that time revealed nothing, but about 3 weeks ago it was discovered I have MAC in addition to AIDS.  I immediately was put on Ethambutol, Rifabution, and a higher dose of azithromycin.  I was feeling great:  gaining weight, more energetic, no night sweats, fever....so I am just very frustrated and down right now with the fever/chills coming back.

Is it possible this is PCP from anyone's experience.  I have no other symptoms and I have been on Bactrim ds since day one of my diagnosis.

I am calling my HIV doc today.
Worried and depressed,
John
8/19/2015: Rec'd HIV positive result on WB test
10/1/2015: Diagnosed with AIDS, CMV retinitis, and MAC
10/1/2015:  CD4- 20 (1%)/ VL- 101,000
11/17/2015:  CD4- 20(1%)/ VL- 108
12/17/2015: CD4- 30 (2%)/ VL- 33
1/14/2016: CD4- 20 (1%)/ VL- 53
2/18/2016: CD4- 37 (2%)/ VL- 39
3/23/2016: CD4- 43 (2%)/VL- UD/clear of MAC
4/18/2016:  CD4- 54(3%)/ VL- UD
5/20/2016: CD4- 64(3%)/ VL- UD
12/10/2016:CD4- 113, VL- UD
4/15/2017: CD4- 144, VL- UD
7/1/2017: CD4- 166 (9%), VL- UD
12/10/2017: CD4- 228 (12%), VL-UD
7/6/2018: CD4- 281, VL- UD
12/12/2018: CD4- 419, VL- UD
7/6/2019: CD4- 458, VL- UD
7/8/2021: CD4- 414, VL- UD
2/21/2022: CD4- 484, VL- UD
8/22/2022: CD4- 602, VL- UD
3/14/2023: CD4- 608, VL- UD
9/8/2023: CD4- 592, VL- UD
3/14/2024: CD4- 733, VL- UD (on Triumeq since '15)

Offline Tonny2

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Re: New to the forum
« Reply #18 on: December 15, 2015, 04:15:32 pm »


      ojo         Hello jon jon...I'm sorry about your low fever and chills, but I'm sorry too that you are feeling down and depressed, you are doing what you are supposed to be doing, on treatment, yes, you have aids, and some OIs, but you are being treated for that...I do not think you will get PCP again, as long as you are taking your Bactrim, and your VL is low now, it might even be UD on Thursday...now, when you see your doctor, ask him if you might have PCP, he can always send you for an Xray...if the Tylenol is helping that's good, I think you will be fine, and I think you will be better, if you have a better attitute, I know it's not easy, but you have to be positive about life, thankfuly the tylenol helps, so be happy about that.

I'll be thinking about you, sending you good vibes, and you will see that by now you might be UD, and hopefully your cd4 start rasing, once you get over 200, your MAC, Retinitis, will go away...big bear hug on your way, sorry for the mispelling, but today my headlight (eye) its almost out...hugs and keep us posted                           ojo

Offline sphinxcat

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Re: New to the forum
« Reply #19 on: December 15, 2015, 07:07:13 pm »
My last CD4 was 171 and still have low fever sometimes. I could feel my breath is hot when breathing...not sure where is the infection. Few days ago I felt I had flu again, with sneeze and running nose but ok now, although I had flu many times this year and had flu vaccination. I still have little cough and sore throat and it has been with me long time since my diagnosis...I vomited the day before yesterday just after taking my pill and had to take another one again..

But now I can go to friend's dinner party, go to work and even go to gym. I can see I am improving day by day....I am sure I don't have pneumonia. So I don't think you have it too....
2015OCT04 tested poz
2015OCT14 cd4 124, 12%, vl 162,000. Right ear Shingles, on Stribild.
2015NOV12 cd4 171, 16%, vl ud.

Offline theQborokid

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Re: New to the forum
« Reply #20 on: December 19, 2015, 12:40:39 am »
jonjon,

dont sweat it man! i was dx last year right before thanksgiving(american), PCP, cd4 was 19, VL in millions, ICU for 2 weeks and all that bad stuff, sure it sucks but once you read up on the research its really not so bad, i think having something like diabetes is harder to live with than HIV because so many more restrictions, not that it is a contest.  I started on stribild and bactrim and all the medicines your on for about 3-4 months until my CD4 could was about 200 for a consecutive period of 3 months.  One year later, im actually in the best physical shape of my life, eating way better and healthier, making major career moves as well, everything is great. and its much better to just wake up take your 1 pill a day and keep going, its like taking a multivitamin.  my last lab results showed cd4 of 330 and vl of 40, almost undectable and that was back in september, its really not a big deal. like everyone else has already said you really just forget that you have it and live on with your life. my close friends and immediate family know, and they dont even remember sometimes that I have it because once your healthy its not a big deal anymore. but the best lesson i learned from it is to just live your life, progress a person, dont pass up any opportunities to better yourself.

Offline JosephP

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Re: New to the forum
« Reply #21 on: January 11, 2016, 10:26:57 pm »
 :)  :) JonJon...Sorry for your dx, but it will get better! I was dxd in 2013 and I thought the world as I knew it had ended.. My numbers were 198 and 78K. I officially had aids. Put on the same regiment as you and on Stribild. I became UD by the end of 2013 and my cd4 has gone up to 400. I never felt sick. Just rundown. Then all of the sudden I began to lose weight rapidly but never suspected hiv. Neither did my doctor. Trying to get a new life insurance policy was the trigger... Now I am under the care of a fantastic woman! And I have never heard her or her staff talk about aids... Hold on in there.. I will get better. I know...My ID doctor one day that I was feeling the blues told me... "You are not dying of aids, you are living with hiv'! Her words resonate every time I feel a bit down.... Take your meds like religion... I dont even mind the size of the pill anymore!! Don't be discouraged... It will improve... You will see.
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 JonJon

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Re: New to the forum
« Reply #22 on: January 12, 2016, 01:00:15 am »
Thanks JosephP for the kind words.  Really, everyone on this forum is helpful and reading everyone's story gives me hope.  I like what you said about living with HIV and not dying from AIDS.  I am very fortunate to have an outstanding HIV doctor in addition to the rest of my "medical team."  They don't even use the term AIDS anymore in their practice....just HIV.  I have been feeling more optimistic lately and eager to see my next lab results next week.

John
8/19/2015: Rec'd HIV positive result on WB test
10/1/2015: Diagnosed with AIDS, CMV retinitis, and MAC
10/1/2015:  CD4- 20 (1%)/ VL- 101,000
11/17/2015:  CD4- 20(1%)/ VL- 108
12/17/2015: CD4- 30 (2%)/ VL- 33
1/14/2016: CD4- 20 (1%)/ VL- 53
2/18/2016: CD4- 37 (2%)/ VL- 39
3/23/2016: CD4- 43 (2%)/VL- UD/clear of MAC
4/18/2016:  CD4- 54(3%)/ VL- UD
5/20/2016: CD4- 64(3%)/ VL- UD
12/10/2016:CD4- 113, VL- UD
4/15/2017: CD4- 144, VL- UD
7/1/2017: CD4- 166 (9%), VL- UD
12/10/2017: CD4- 228 (12%), VL-UD
7/6/2018: CD4- 281, VL- UD
12/12/2018: CD4- 419, VL- UD
7/6/2019: CD4- 458, VL- UD
7/8/2021: CD4- 414, VL- UD
2/21/2022: CD4- 484, VL- UD
8/22/2022: CD4- 602, VL- UD
3/14/2023: CD4- 608, VL- UD
9/8/2023: CD4- 592, VL- UD
3/14/2024: CD4- 733, VL- UD (on Triumeq since '15)

Offline Saadg122

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  • Posts: 7
Re: New to the forum
« Reply #23 on: January 23, 2016, 01:55:26 am »
Hello,
I want to tell my story do you know how I can start a new post for a new topic on this forum? I can't find how to do it.
Thank you

Offline JonJon

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  • Posts: 59
Re: New to the forum
« Reply #24 on: March 22, 2016, 09:23:30 pm »
Hi all,

Just wanted to share that as of today I  finally have an UD Viral Load!  Tomorrow is my HIV doc appt but I received this great news via my health online from the clinic I go to.  I had to stare at the words "Not Detected" several times to make sure I was not seeing things...lol.   It is also my birthday today, so this was the best bday present!

I don't know my CD4 count yet, but hopefully that is up some now too.

On another note, my latest blood culture test shows no MAC either.

It has been a good day for me!

Hoping to hear more good news tomorrow.

John
8/19/2015: Rec'd HIV positive result on WB test
10/1/2015: Diagnosed with AIDS, CMV retinitis, and MAC
10/1/2015:  CD4- 20 (1%)/ VL- 101,000
11/17/2015:  CD4- 20(1%)/ VL- 108
12/17/2015: CD4- 30 (2%)/ VL- 33
1/14/2016: CD4- 20 (1%)/ VL- 53
2/18/2016: CD4- 37 (2%)/ VL- 39
3/23/2016: CD4- 43 (2%)/VL- UD/clear of MAC
4/18/2016:  CD4- 54(3%)/ VL- UD
5/20/2016: CD4- 64(3%)/ VL- UD
12/10/2016:CD4- 113, VL- UD
4/15/2017: CD4- 144, VL- UD
7/1/2017: CD4- 166 (9%), VL- UD
12/10/2017: CD4- 228 (12%), VL-UD
7/6/2018: CD4- 281, VL- UD
12/12/2018: CD4- 419, VL- UD
7/6/2019: CD4- 458, VL- UD
7/8/2021: CD4- 414, VL- UD
2/21/2022: CD4- 484, VL- UD
8/22/2022: CD4- 602, VL- UD
3/14/2023: CD4- 608, VL- UD
9/8/2023: CD4- 592, VL- UD
3/14/2024: CD4- 733, VL- UD (on Triumeq since '15)

Offline Jim Allen

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Re: New to the forum
« Reply #25 on: March 22, 2016, 09:38:55 pm »
Excellent and Welcome to the UD club  8)
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Offline CaveyUK

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Re: New to the forum
« Reply #26 on: March 23, 2016, 08:27:45 am »
Hi all,

Just wanted to share that as of today I  finally have an UD Viral Load!  Tomorrow is my HIV doc appt but I received this great news via my health online from the clinic I go to.  I had to stare at the words "Not Detected" several times to make sure I was not seeing things...lol.   It is also my birthday today, so this was the best bday present!

I don't know my CD4 count yet, but hopefully that is up some now too.

On another note, my latest blood culture test shows no MAC either.

It has been a good day for me!

Hoping to hear more good news tomorrow.

John

Great news! Onwards and upwards (for the CD4 count!)

Of course, in some places you would have already been UD when your VL went under 50 so you are now doing officially amazingly! Congrats!
HIV - Basics
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HIV Transmission and Risks
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PEP and PrEP

Offline Tonny2

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Re: New to the forum
« Reply #27 on: March 23, 2016, 10:42:33 am »
Hi all,

Just wanted to share that as of today I  finally have an UD Viral Load!  Tomorrow is my HIV doc appt but I received this great news via my health online from the clinic I go to.  I had to stare at the words "Not Detected" several times to make sure I was not seeing things...lol.   It is also my birthday today, so this was the best bday present!

I don't know my CD4 count yet, but hopefully that is up some now too.

On another note, my latest blood culture test shows no MAC either.

It has been a good day for me!

Hoping to hear more good news tomorrow.

John

          ojo        Hello Jon Jon....congratulations and happy birthday....happy for you, now, let's get your soldiers "arriba", so you can get rid of all those meds you are taking to prevent infection...how is your CMV?...hugs and welcome to the UD club, hopefully, you will be a long time member of this club, I've been a nine years (same combo) member...more hugs                                                                       ojo

Offline Wade

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Re: New to the forum
« Reply #28 on: March 23, 2016, 11:33:47 am »
Great News John !
What a Great Birthday present .

Oh and Happy Birthday !

Best, 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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Offline Bartlett

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Re: New to the forum
« Reply #29 on: March 23, 2016, 01:36:32 pm »
Awesome - so happy for you! And Happy Birthday as well
DX 1/25/16
3/30/16 - CD4 368 20% VL: 48k
6/7/16 - RX for Genvoya
7/25/16 - VL: <20; CD4 461/17%
11/28/16 - VL: UD; CD4 357/19%
3/20/17 - VL: UD; CD4 489 / 22%
7/24/17 - VL: UD; CD4 449 / 23%
11/21/17 - VL:UD; CD4 523 / 22%
3/27/18 - VL: UD; CD4 580/21%
7/31/18 - VL: 90 ; CD4 552/23%
10/31/18 - VL: UD; CD4 502/29%
01/18/19 - VL: 30; CD4 518/34%
04/29/19 - VL: UD; CD4 707/27%
7/16/19 - VL: UD; CD4 497/27%
12/4/19 - VL: UD; CD4 527/29%
04/6/20 - VL: UD; CD4 668/27%
4/1/21 - VL: UD; CD4 470/29%

Offline JonJon

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Re: New to the forum- UPDATE AFTER 7 YEARS!
« Reply #30 on: January 27, 2024, 03:59:25 pm »
Hello all,
This is JonJon here.  It has been about 7 years since I last posted here and I would like to give an update on my health and to give hope to those who are newly diagnosed and feeling down.
I was diagnosed with AIDS in August 2015 at age 44.  My CD4 count was <20 and a VL of over 108,000.  I waited too long to get tested and was in denial but I had so many opportunistic infections and so sick that I had to do something.  I took a medical leave of absence for one year, got in touch with an HIV specialist and started Triumeq immediately.  I had several other HIV-related health issues that I had to deal with: MAC, CMV retinitis, anal warts and dysplasia (external and internal), molluscum on face, other skin issues on fingers, I was a mess physically and mentally.  It took about 2 years to clear all that up and get to UD status.
I am happy to say that today at age 53, I am still UD and with a CD4 count of 660! I feel and look great. I still have health concerns due to aging (LOL) and non-HIV related such as elevated lipids and I had a detached retina in left eye that required surgery  last summer.  Outcome was very successful.  I remain celibate and do not date or have sex.  I pleasure myself with porn and masturbation ha ha.  Life is good and there is hope.  I just wanted to thank all that gave me support, advice, and encouragement when I was first diagnosed.
John
« Last Edit: January 27, 2024, 04:01:58 pm by JonJon »
8/19/2015: Rec'd HIV positive result on WB test
10/1/2015: Diagnosed with AIDS, CMV retinitis, and MAC
10/1/2015:  CD4- 20 (1%)/ VL- 101,000
11/17/2015:  CD4- 20(1%)/ VL- 108
12/17/2015: CD4- 30 (2%)/ VL- 33
1/14/2016: CD4- 20 (1%)/ VL- 53
2/18/2016: CD4- 37 (2%)/ VL- 39
3/23/2016: CD4- 43 (2%)/VL- UD/clear of MAC
4/18/2016:  CD4- 54(3%)/ VL- UD
5/20/2016: CD4- 64(3%)/ VL- UD
12/10/2016:CD4- 113, VL- UD
4/15/2017: CD4- 144, VL- UD
7/1/2017: CD4- 166 (9%), VL- UD
12/10/2017: CD4- 228 (12%), VL-UD
7/6/2018: CD4- 281, VL- UD
12/12/2018: CD4- 419, VL- UD
7/6/2019: CD4- 458, VL- UD
7/8/2021: CD4- 414, VL- UD
2/21/2022: CD4- 484, VL- UD
8/22/2022: CD4- 602, VL- UD
3/14/2023: CD4- 608, VL- UD
9/8/2023: CD4- 592, VL- UD
3/14/2024: CD4- 733, VL- UD (on Triumeq since '15)

Offline Tonny2

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Re: New to the forum
« Reply #31 on: January 27, 2024, 05:07:22 pm »



            ojo.        Hello there!
… I think I remembered you. I’m glad to hear that everything is OK with you. Question, Amy Secuelas from CMV retinitis?… welcome back.
…hugs

Offline Jim Allen

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Re: New to the forum
« Reply #32 on: January 27, 2024, 05:50:17 pm »
It's great to hear from you, and this is an excellent update. I'm sorry to hear about the eye problems, but I'm glad the surgery worked out.

Don't be a stranger  :)
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Offline numbersguy82

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Re: New to the forum
« Reply #33 on: January 27, 2024, 06:01:40 pm »
Wow you’ve really gotten yourself back on the right track- I’m very happy for you! I’m sure this post will be an excellent source of inspiration for so many on here, who may find themselves feeling down about their own situation!

I’m also glad you’ve returned to these forums. Are you planning to stick around? We now have “virtual” events regularly. A once monthly weekend gathering (which happens to be tomm) and also biweekly peer support on Friday. If you’re ever interested just PM me your email address.
Peer Support is returning, every THIRD Thursday beginning in July. New Time, New Day, New Format!

Offline JonJon

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Re: New to the forum
« Reply #34 on: January 27, 2024, 07:31:02 pm »


            ojo.        Hello there!
… I think I remembered you. I’m glad to hear that everything is OK with you. Question, Amy Secuelas from CMV retinitis?… welcome back.
…hugs
Hello Tonny....no i have no serious damage to my retina or central vision from the CMV.  I go to a retina specialists yearly and it has not returned since the earlier days.  I have had other issues unrelated prior and post HIV:  Poor nearsightedness, Lasik, Cataract surgery on both eyes, and most recently detached left retina that has completely healed with a silicone virectomy.  My vision is great other than some loss of periphery and night time driving is not so good but I dont go out anyways at night ha ha.
8/19/2015: Rec'd HIV positive result on WB test
10/1/2015: Diagnosed with AIDS, CMV retinitis, and MAC
10/1/2015:  CD4- 20 (1%)/ VL- 101,000
11/17/2015:  CD4- 20(1%)/ VL- 108
12/17/2015: CD4- 30 (2%)/ VL- 33
1/14/2016: CD4- 20 (1%)/ VL- 53
2/18/2016: CD4- 37 (2%)/ VL- 39
3/23/2016: CD4- 43 (2%)/VL- UD/clear of MAC
4/18/2016:  CD4- 54(3%)/ VL- UD
5/20/2016: CD4- 64(3%)/ VL- UD
12/10/2016:CD4- 113, VL- UD
4/15/2017: CD4- 144, VL- UD
7/1/2017: CD4- 166 (9%), VL- UD
12/10/2017: CD4- 228 (12%), VL-UD
7/6/2018: CD4- 281, VL- UD
12/12/2018: CD4- 419, VL- UD
7/6/2019: CD4- 458, VL- UD
7/8/2021: CD4- 414, VL- UD
2/21/2022: CD4- 484, VL- UD
8/22/2022: CD4- 602, VL- UD
3/14/2023: CD4- 608, VL- UD
9/8/2023: CD4- 592, VL- UD
3/14/2024: CD4- 733, VL- UD (on Triumeq since '15)

Offline JonJon

  • Member
  • Posts: 59
Re: New to the forum
« Reply #35 on: January 27, 2024, 07:33:17 pm »
It's great to hear from you, and this is an excellent update. I'm sorry to hear about the eye problems, but I'm glad the surgery worked out.

Don't be a stranger  :)
Hello Jim.
I am glad I checked back in here after such a long hiatus. I really wanted to "give back" and bring some hope to anyone who is struggling with HIV/AIDS.  My  numbers were awful in the beginning and I had a lot of infections and mental issues that went along with that but I have a loving and supporting family and have been blessed with outstanding doctors.
« Last Edit: January 27, 2024, 07:41:08 pm by JonJon »
8/19/2015: Rec'd HIV positive result on WB test
10/1/2015: Diagnosed with AIDS, CMV retinitis, and MAC
10/1/2015:  CD4- 20 (1%)/ VL- 101,000
11/17/2015:  CD4- 20(1%)/ VL- 108
12/17/2015: CD4- 30 (2%)/ VL- 33
1/14/2016: CD4- 20 (1%)/ VL- 53
2/18/2016: CD4- 37 (2%)/ VL- 39
3/23/2016: CD4- 43 (2%)/VL- UD/clear of MAC
4/18/2016:  CD4- 54(3%)/ VL- UD
5/20/2016: CD4- 64(3%)/ VL- UD
12/10/2016:CD4- 113, VL- UD
4/15/2017: CD4- 144, VL- UD
7/1/2017: CD4- 166 (9%), VL- UD
12/10/2017: CD4- 228 (12%), VL-UD
7/6/2018: CD4- 281, VL- UD
12/12/2018: CD4- 419, VL- UD
7/6/2019: CD4- 458, VL- UD
7/8/2021: CD4- 414, VL- UD
2/21/2022: CD4- 484, VL- UD
8/22/2022: CD4- 602, VL- UD
3/14/2023: CD4- 608, VL- UD
9/8/2023: CD4- 592, VL- UD
3/14/2024: CD4- 733, VL- UD (on Triumeq since '15)

Offline JonJon

  • Member
  • Posts: 59
Re: New to the forum
« Reply #36 on: January 27, 2024, 07:36:21 pm »
Wow you’ve really gotten yourself back on the right track- I’m very happy for you! I’m sure this post will be an excellent source of inspiration for so many on here, who may find themselves feeling down about their own situation!

I’m also glad you’ve returned to these forums. Are you planning to stick around? We now have “virtual” events regularly. A once monthly weekend gathering (which happens to be tomm) and also biweekly peer support on Friday. If you’re ever interested just PM me your email address.
\\

So many people on this forum have helped me emotionally during those initial years when I was dealing with the worst possible HIV issues....eye, skin, and anal issues.....low numbers.....mentally it was hard too.  I was on here constantly that first year since I took a medical leave of absence but then after awhile I drifted away from the board when my life got back to a new normal.  Yes, I will check in more often here.  This forum is a valuable outlet for all of us.
8/19/2015: Rec'd HIV positive result on WB test
10/1/2015: Diagnosed with AIDS, CMV retinitis, and MAC
10/1/2015:  CD4- 20 (1%)/ VL- 101,000
11/17/2015:  CD4- 20(1%)/ VL- 108
12/17/2015: CD4- 30 (2%)/ VL- 33
1/14/2016: CD4- 20 (1%)/ VL- 53
2/18/2016: CD4- 37 (2%)/ VL- 39
3/23/2016: CD4- 43 (2%)/VL- UD/clear of MAC
4/18/2016:  CD4- 54(3%)/ VL- UD
5/20/2016: CD4- 64(3%)/ VL- UD
12/10/2016:CD4- 113, VL- UD
4/15/2017: CD4- 144, VL- UD
7/1/2017: CD4- 166 (9%), VL- UD
12/10/2017: CD4- 228 (12%), VL-UD
7/6/2018: CD4- 281, VL- UD
12/12/2018: CD4- 419, VL- UD
7/6/2019: CD4- 458, VL- UD
7/8/2021: CD4- 414, VL- UD
2/21/2022: CD4- 484, VL- UD
8/22/2022: CD4- 602, VL- UD
3/14/2023: CD4- 608, VL- UD
9/8/2023: CD4- 592, VL- UD
3/14/2024: CD4- 733, VL- UD (on Triumeq since '15)

Offline JonJon

  • Member
  • Posts: 59
Re: New to the forum
« Reply #37 on: March 15, 2024, 06:22:02 am »
2024 Update:  Just got my lab results back yesterday (3/15/2024) and my CD4 is 733! This is the highest count I have had since my HIV/AIDS diagnosis in 2015.  I was diagnosed in 2015 with a CD4 of >20....I was in bad shape then.  Took me 9 years to get to 733 and I am feeling great!

Just wanted to share with you all that even someone like me who had a very poor prognosis that with today's meds and excellent support and resources, there is hope. 

Happy Friday!
John
8/19/2015: Rec'd HIV positive result on WB test
10/1/2015: Diagnosed with AIDS, CMV retinitis, and MAC
10/1/2015:  CD4- 20 (1%)/ VL- 101,000
11/17/2015:  CD4- 20(1%)/ VL- 108
12/17/2015: CD4- 30 (2%)/ VL- 33
1/14/2016: CD4- 20 (1%)/ VL- 53
2/18/2016: CD4- 37 (2%)/ VL- 39
3/23/2016: CD4- 43 (2%)/VL- UD/clear of MAC
4/18/2016:  CD4- 54(3%)/ VL- UD
5/20/2016: CD4- 64(3%)/ VL- UD
12/10/2016:CD4- 113, VL- UD
4/15/2017: CD4- 144, VL- UD
7/1/2017: CD4- 166 (9%), VL- UD
12/10/2017: CD4- 228 (12%), VL-UD
7/6/2018: CD4- 281, VL- UD
12/12/2018: CD4- 419, VL- UD
7/6/2019: CD4- 458, VL- UD
7/8/2021: CD4- 414, VL- UD
2/21/2022: CD4- 484, VL- UD
8/22/2022: CD4- 602, VL- UD
3/14/2023: CD4- 608, VL- UD
9/8/2023: CD4- 592, VL- UD
3/14/2024: CD4- 733, VL- UD (on Triumeq since '15)

 


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