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Main Forums => Living With HIV => Topic started by: artis2068 on January 10, 2022, 06:47:12 pm

Title: (Crazy Test Result) Family Idk what the hell is going on. I need your wisdom!
Post by: artis2068 on January 10, 2022, 06:47:12 pm
Here are my stat: Male / 32 / 175ibs

1. 1st week Nov 2019 Ė CD4 15 & VL 4.8 Million - Biktarvey
2. 3rd week Nov 2019 Ė CD4 45 & VL 2,200 - Biktarvey
3. Mid December 2019 Ė CD4 80 & VL 626 - Biktarvey
4. Mid Feb 2020 Ė CD4 78 &VL 206 - Biktarvey
5. End May 2020 Ė CD4 206 & VL 506 - Biktarvey
7. Jun 1, 2020 - Retest - CD4 290 & VL 136 - Biktarvey
8. August 4th 2020 - CD4 252  & VL 209 - Descovy & Tivicy (2x a day)
9. Nov 9 2020 - CD4 326 & VL 183 - Descovy & Tivicy (2x a day)
10. Mar 19, 2020 - CD4 351 & VL 79 - Descovy & Tivicy (2x a day)
11. Mar 6, 2021 CD4 666 & VL 53 - Descovy & Tivicy (1x a day)
12. NOV24, 2021 CD4 342 & 308  - Descovy & Tivicy (1x a day)
13. Jan 7, 222 CD4 109 & VL 380 - Symtuza + Tivicy (1x a day)

Please family I dont know what the hell is going on. I need your wisdom and experience.  First off let me say I feel absolutely perfect. I haven't had a cold, covid-19, a sore throat, flu, stuffy nose, no fever, no elevated heart rate, no elevated blood pressure, absolutely nothing since I was really sick back in Nov 2019 (TMI) And I sleep in the nude in with the air on 60 (TMI) and still haven't been sick. During the time I was really sick I had pneumonia, thrust, and a really bad sore throat. Anyway In November 2021 my doctor wanted to switch me form Descovy & Tivicy and try symtuza  & tivicy to see if I could achieve undetectable. For some reason my viral load keeps hovering. So my doctor wanted to give me some medicine with a booster in it. Based on everything I've read the higher and sicker you are when you start treatment the harder it is to achieve undetectable and as you can see I started extremely sick. I had a resistance test in 2021 I believe or maybe 2020 and it came back with no resistance to the meds I was on at that time. My main concern is the CD4 of 109 all of sudden. Frankly I was amazed this was the actual number I was not expecting that. Especially since my VL is still so low. From what I read a viral load that low shouldn't affect my CD4 cells.  I have not missed any doses, I do not take any supplements, I do not have any co-infections, I dont drink or smoke, I workout and mostly have a plant base diet, etc so I do not understand why my CD4 dropped so drastically. The weird thing is my CD4-Helper T cells % increased to 16%. Based on my last test it was 13%. And when I had low CD4 numbers like this before the % was much lower. For example back in Feb 2020 Ė CD4 78 &VL 206 and my CD4% was 7% So based on the numbers in my file and comparing them to my current percentage I find it difficult to believe my CD4 numbers would be that low. My CD4 % always correlated with my active CD4 cells in my blood. However this time its drastically different. The majority of my other immune system numbers looked good or have improved to close to stable numbers or at stable. I dont know if this is a true number. 1. this is a new medicine I've just started, and 2 I had to use a new lab to  complete my blood work for the most recent test. My typical lab I go to was closed due to a covid outbreak.

My questions:
Has anyone every had this experience before?

Has anyone had their CD4 numbers drop but all other numbers either stay the same or improve? ie CD4%

Has anyone switched medications and received a lower CD4?

Do you feel this is a true number or a possible lab error?
- I read that sometimes the tube of blood they test may not have a lot of CD4 cells in that specimen.

Please share your experience.....


Conclusion:

I intend to ask for a new resistance test. Also I intend to ask for a retest as well.

My doctors appointment is on 1/12/2022.


I cant believe I'm back to this stage again. Especially since I've done everything right  :-\. I want lie this I'm trying to stay optimistic but I do feel a bit depress by this. Thanks everyone for your feedback
Title: Re: (Crazy Test Result) Family Idk what the hell is going on. I need your wisdom!
Post by: Jim Allen on January 11, 2022, 09:28:21 am
Hiya,

My CD4 goes up and down by hundreds between visits, last big swing I had it was a 300+ count drop but it's irrelevant to me as my CD4% is okay and the virus is suppressed.

The CD4% is a more reliable indicator and trend to follow. If I am understanding your post correctly, it seems pretty stable, although on the low side at 13%, also the viral load isn't fully suppressed at 300 copies since Nov and changing meds does not seem to have changed it.

If it was me I would talk to my clinic and maybe rerun the viral load in a few weeks time given the recent switch and see what the story is at that time.


Title: Re: (Crazy Test Result) Family Idk what the hell is going on. I need your wisdom!
Post by: CR2016 on January 11, 2022, 11:39:40 am
Hi Artis2068.
is not so nice read about that...
but, as Jim said, talk to your doctor about more VL tests... it seems not so highs at least, so you and your doctor should look ther how these number move up or continue same level....
i understand how you can feel now, however i havent be on this situation but i try to understand. feel confortable if you are healthy today, trust about tomorrow exams and if not, there should be a better thing to do.
please, share how you feel nex days, at least some of us can read you.
Hugs!
Title: Re: (Crazy Test Result) Family Idk what the hell is going on. I need your wisdom!
Post by: lightalltheway on January 11, 2022, 06:00:52 pm
Hi Artis2068,

I am really sorry that your mind is eating you up with all these questions and doubts. I am here to tell you that i can not only understand you but also feel you.

I also started my treatment at a very late stage, my CD4 count was one digit and it took years to achieve the 200 Count. I was so obsessed with my lab results, i kept repeating them, checking numbers and try to understand each single reading and how it correlates to the other. Then i lost track of life.

I echo Jim here, CD4 count is not important at all. It fluctuates during the day. For example, your readings at day time is not the same as at night. What is more stable is the CD4 percentage. From my experience, i also witnessed a drop in the percentage at one of the readings and my doctor assured me that it can happen due several factors such as being sick or previously being sick or an internal inflamation that we cant know about. And she was correct, the next reading, the percentage returned to normal.

In my opinion, achieving an UD VL is what matters at all cost. From your post, you are healthy and feeling well. Here, i also remember my doctor saying: listen to your body and look at yourself, enjoy your wellbeing. Her words brought comfort to me and i do hope my post will do the same for you.

Keep us posted and always remember, you are not alone.

Light all the way
Prince
Title: Re: (Crazy Test Result) Family Idk what the hell is going on. I need your wisdom!
Post by: artis2068 on January 12, 2022, 11:09:52 am
Hiya,

My CD4 goes up and down by hundreds between visits, last big swing I had it was a 300+ count drop but it's irrelevant to me as my CD4% is okay and the virus is suppressed.

The CD4% is a more reliable indicator and trend to follow. If I am understanding your post correctly, it seems pretty stable, although on the low side at 13%, also the viral load isn't fully suppressed at 300 copies since Nov and changing meds does not seem to have changed it.

If it was me I would talk to my clinic and maybe rerun the viral load in a few weeks time given the recent switch and see what the story is at that time.

Thanks!! my doctor confirmed  what you said. They were not concerned with the cd4 because the cd4 percentage increased to 16%.. They said the cd4s could have dropped for many reasons. She said if they took blood from both arms at the same time the numbers could be different. She suggested we stay the course on my current meds. Regarding my. VL She said based on the percentage increase she doesnít feel the VL increase is Replicating virus more than likely itís viral particles being picked up by the machine unfortunately the machine testing does not differentiate between replicating virus and  viral particles. So overall still doing well and we have no concerns. The only suggestion is to take my medicine with more fatty foods. I cook a lot and even go as far to make my own cereal to control my sugar intake since diabetes runs rampant in my family and I donít want that. So a lot of times I would take my meds with super low sugar no fat cereal or a bowl of fruit and maybe an egg.  I take symtuza plus tivicy and she feel the symtuza will be absorbed better with fattier food vs my typical plant base food. We donít believe the VL is replicating virus but to be sure we are getting the full benefit of the meds we decided to switch up on what Iím eating when I take my medicine. Thank for your help, wisdom, and calming perspective regarding this I really appreciate this forum and helping navigate this.  :-*
Title: Re: (Crazy Test Result) Family Idk what the hell is going on. I need your wisdom!
Post by: artis2068 on January 12, 2022, 11:10:19 am
Hi Artis2068,

I am really sorry that your mind is eating you up with all these questions and doubts. I am here to tell you that i can not only understand you but also feel you.

I also started my treatment at a very late stage, my CD4 count was one digit and it took years to achieve the 200 Count. I was so obsessed with my lab results, i kept repeating them, checking numbers and try to understand each single reading and how it correlates to the other. Then i lost track of life.

I echo Jim here, CD4 count is not important at all. It fluctuates during the day. For example, your readings at day time is not the same as at night. What is more stable is the CD4 percentage. From my experience, i also witnessed a drop in the percentage at one of the readings and my doctor assured me that it can happen due several factors such as being sick or previously being sick or an internal inflamation that we cant know about. And she was correct, the next reading, the percentage returned to normal.

In my opinion, achieving an UD VL is what matters at all cost. From your post, you are healthy and feeling well. Here, i also remember my doctor saying: listen to your body and look at yourself, enjoy your wellbeing. Her words brought comfort to me and i do hope my post will do the same for you.

Keep us posted and always remember, you are not alone.

Light all the way
Prince


Thanks!! my doctor confirmed  what you said. They were not concerned with the cd4 because the cd4 percentage increased to 16%.. They said the cd4s could have dropped for many reasons. She said if they took blood from both arms at the same time the numbers could be different. She suggested we stay the course on my current meds. Regarding my. VL She said based on the percentage increase she doesnít feel the VL increase is Replicating virus more than likely itís viral particles being picked up by the machine unfortunately the machine testing does not differentiate between replicating virus and  viral particles. So overall still doing well and we have no concerns. The only suggestion is to take my medicine with more fatty foods. I cook a lot and even go as far to make my own cereal to control my sugar intake since diabetes runs rampant in my family and I donít want that. So a lot of times I would take my meds with super low sugar no fat cereal or a bowl of fruit and maybe an egg.  I take symtuza plus tivicy and she feel the symtuza will be absorbed better with fattier food vs my typical plant base food. We donít believe the VL is replicating virus but to be sure we are getting the full benefit of the meds we decided to switch up on what Iím eating when I take my medicine. Thank for your help, wisdom, and calming perspective regarding this I really appreciate this forum and helping navigate this.  :-*
Title: Re: (Crazy Test Result) Family Idk what the hell is going on. I need your wisdom!
Post by: artis2068 on January 12, 2022, 11:10:51 am
Hi Artis2068.
is not so nice read about that...
but, as Jim said, talk to your doctor about more VL tests... it seems not so highs at least, so you and your doctor should look ther how these number move up or continue same level....
i understand how you can feel now, however i havent be on this situation but i try to understand. feel confortable if you are healthy today, trust about tomorrow exams and if not, there should be a better thing to do.
please, share how you feel nex days, at least some of us can read you.
Hugs!

Thanks  :-* I posted my update below I really appreciate you!
Title: Re: (Crazy Test Result) Family Idk what the hell is going on. I need your wisdom!
Post by: lightalltheway on January 12, 2022, 05:51:16 pm
Happy days! happy news! i am sure you are feeling better now.
Trust your body and enjoy your life.