Undetectable. But Cd4 keeps dropping under 150 now

[silguy618]

Found out that I was hiv positive Feb 2018.  Had been positive I assume for 12 years. Never knew, never been sick.  Married 11 years and wife is negative.
Started with Genvoya was undetectable within 14 days.   ID Dr changed me to Biktarvy. And have been undetectable ever since. Wife is an advanced nurse practitioner so she keeps up with my blood work.  My ID Dr is a 4 hr drive one way.  We live in a rural part of the United States.
At start cd4  was 650.  VL was 150,000.  Since start of medication.  I have maintained undetectable levels.  But Cd4 has slowly dropped since 18 and the start of the antiviral.   Last check I was at 154.  Can't shake the flu bug.  Drove to my ID and he said everything was ok as long as I'm undetectable 
I am concerned with the continued drop my health is endanger.   Wife started me on Bactrim daily. But I'm physically exhausted after working 12 hr days. 
And help or suggestions.   I don't smoke or drink.
48 years old.  Extremely fit. 

[Mojito]

The anti retroviral drugs would only keep your viral load undetectable. So if you are undetectable, that means the drugs are working for you. The drugs don't do anything to increase the CD4 count. However continuous decrease in CD4 should be worrying especially to the level you have reached. Would suggest to consult another doctor. Make be some detailed investigation or blood work (than regular for CD4) might be required. Continue the bactrim to protect yourself from OI.

[silguy618]

That's what I thought as well.  I travel to Washington University in St Louis.  They are supposed to be the best in my area.  They said not to worry.  And even went as far as to say Bactrim wasn't needed.  My wife went ahead and had it prescribed for me.  We asked for any testing to determine why and was told it unwarranted. 

[Jim Allen]

Hiya,

I would not worry too much, it was was just a recent dip in CD4 counts whilst you have been unwell. I ask because looking back they recovered nicely for the first year.

More importantly what has the % trend been like? I can understand wanting to take the antibiotics for the time being

But Cd4 has slowly dropped since 18 and the start of the antiviral.

?

March 12 2018
First visit CD4 was 292 or 215

May 2018
CD4 305

Dec 2018
CD4 600

What the trend from the last 2 check-ups in 2019?

Jim

[silguy618]

It's dropped continuously since 2018.  My ID switch me to 6 month visits.  In Aug it was 270.   Now 154.   Steady decline.  They don't seem to worry. I'm just a number to them

[silguy618]

Hiya,

I would not worry too much, it was was just a recent dip in CD4 counts whilst you have been unwell. I ask because looking back they recovered nicely for the first year.

More importantly what has the % trend been like? I can understand wanting to take the antibiotics for the time being

?

Jim.  I never said I was sick.   I got my cd4 results a few weeks ago.   Now I can't shake this flu bug.  Not sick or fever just extremely fatigued.  I'm year 3 now and they have been dropping since the start.  Bactrim won't help on a virus.  I was fatigued for the last few months.  But not sick till Wednesday.  That got me thinking I'm sick because of my cd4 count has my immune system weaked.   The  don't seem to be considered  but now 3 weeks later I got the flu. Took Tamiflu and still not recovered even weaker now






March 12 2018
First visit CD4 was 292 or 215

May 2018
CD4 305

Dec 2018
CD4 600

What the trend from the last 2 check-ups in 2019?

Jim

[leatherman]

first, cd4 counts should always be viewed as a trend of at least 3 tests over 6 months or more
second, cd4 counts can vary by 100 pts a day
third, cd4s are not a measure of healthiness. it a quantity measure of one part of your immune system.

so, like Jim, I went through your posts and these have been your numbers
4/2018 292
5/2018 305
12/2018 >600
8/2019 270
2/2020 154

I'm just a number to them

well, numbers are data (i.e. numerical representation of factual truth) so yes, we are often just numbers as it's that data that explains what's going on in our bodies, and what a doctor needs to do to treat our bodies at that stage.

seems to me most of your counts have been close to 300 with the anomaly being the >600 data point. Your last two tests are barely different from than the 100-pt possible daily change. During that time you have gone from initially diagnosed with a high viral load to UD. Looking at those numbers it's not surprising that your doctor isn't very concerned. In two years your VL has gone to UD and your cd4s have held pretty level. That's a pretty standard situation for successful HIV treatment.

Make be some detailed investigation or blood work (than regular for CD4) might be required

if you're having issues (fatigue, flu, or anything else) they aren't HIV related (you're UD) and you and your doctor should be addressing other reasons. As far as the flu, your situation sounds pretty much like what went around here in SC back in Nov and again in Jan. Seemed like nobody could shake the thing for weeks.  Try to get more rest, drink plenty of fluids and feel better soon!

[silguy618]

Factual data. I have left out 6 cd4 count results.  Which has been declining since 12/18.  I appreciate yo advice.  But after 12/18. I quit posting.  Now I see again why I stopped.  Jim who is the administrator.  Must not live in the United States.  Has to deal with health care insurance I would bet.  Probably isn't fully employed or employed at all.  I'm done.  Now I see why the forums have drastically dropped.  The post are over ran by him and his opinions.  You can just delete the thread.  The cdc says extended cd4 levels below 200 are health dangerous.  I'll just stick to actual medical sites

[Jim Allen]

You sound bitter about the work situation and it seems to be important to you.

I work full time, always have and I have to deal with insurance, no idea why my employment status is on your mind or why it would matter to you if I was employed or unemployed. HIV certainly doesn't care, anyhow, it's not a secret, here is my LinkedIn profile if that helps you https://ie.linkedin.com/in/jimallenireland

Now just to be fair and since you seem to think it's important would you care to share your full name and employment records with us?

No, I'm not the USA and neither is it the centre of the universe but I've been living with HIV & AIDS about 18 years more then you have and, experienced more then you could ever fucking have or could imagen. Anyhow the forum is actually trending very healthy minus the spammers and fakers, but thanks for your concern.

I simply asked about your trends and expressed my understanding in taking the Bactrim given the CD4 count, and you come back with what is an unprovoked attack about my employment status, where I live and the CDC... 
 
Obviously, you have some issues so in your own interest ill count myself out from the thread. I'll simply close by saying I do wish you well and hope things go well, particularly regarding the fatigue as I know how hard that can be.

Best, Jim

[Mojito]

Hey Silguy. I understand that you are going through difficult times. Be assured everyone on this forum is having or had a tough life. That doesn't mean that one has to be rude to other members. People here comment based out of their experiences and their HIV journey that we have gone through. Most of us aren't doctor. But it always helps when someone is there to listen and assure.

[leatherman]

Factual data. I have left out 6 cd4 count results.

doesn't matter. CD4s are about a trend. your first count over the 2yr period was 292 and the last count was 154. While that is a slight trend down, it's just shy of the possible 100pt change within a day.

The cdc says extended cd4 levels below 200 are health dangerous.

can be dangerous to your health but not absolute. I lived with >200 for 20 yrs before getting better numbers. It's been 10 yrs since that and I couldn't be healthier - even though my count is still normally in the mid 300s. there are others here who have lived with cd4s >200 for decades.

[skeebo1969]

   Wow.....   

[harleymc]

With a suppressed viral load there is no point in changing anything about ART or medical practitioner.

When you've been around the PLWA community long E much you'll fi d that your story is not uncommon.

[silguy618]

Well I have been stressed and mentally struggling.  Sorry for the temper blow up.
I did my retest yesterday. Still waiting for my updated CD4.  I have been undetectable since 15 days starting my treatment.  Was first on Genvoya then ID switched me to Biktarvy.
Todays VL has floored me.   934.   
I have always been undetectable and now it's this.  I haven't heard from my ID Dr but I'm panicked.   What had happened?   Have I become resistant?   I have never missed a dose ever.  Please help

[silguy618]

Can I get a idea of what is happening.   My ID hasn't returned my call and I'm panicked..

[guitargal]

I know you are worried. Try not to panic. Stress is really bad for us. FWIW, my counts were below 100 back in the mid 1990's, before protease. This was before viral load tests. I had fatigue, pneumonia once, I just tried to eat well, keep stress at a minimum, no alcohol, fresh air. Then the new meds came out and the viral load tests.
By 1999 I felt really good and got a new lease on life and my t cells were about 450 and undetectable.
Best thing you can do is exercise, fresh air, home cooked food, home made soups,  no junk , frozen, pre packaged or takeout,  keep clean, wash your hands and listen to music, do art projects,  have something to plan for...look forward to, concert, holiday etc, , try to have fun and laugh. Being happy and laughing is healing.
I know it's  hard to be happy laugh, with such a disease but you just have to wait it out and see. When you shake that cold off you will feel better.

[silguy618]

Well I got some results back from my follow up my np insisted on doing
It's just cd4 /cd8
%CD4  27
Absolute CD4 676
% CD8.  43(high).??
Absolute CD8. 1048

Nurse practitioner put me on daily Bactrim when she saw my number so low. So I'm taking that every evening.  But it's a good change.  Scary how a flu or virus does this.   
My ID Dr. I have one the main one and a fellow the main one told me viruses and things like this doesn't affect viral load.  Not to worry.   
The fellow told me the opposite.  That it's can. 
Also the main Dr. Told me if I'm suppressed and undetectable.  I'm protected from other strains of hiv. If I had an encounter. 
The fellow said complete opposite.  That it doesn't and I would have extreme risk of getting a Resistant virus

[silguy618]

Made a mistake

Actually I have made a error. This is what I get for stressing and looking at my results online myself 
January 28th  cd4. 153
February 5th.  Cd4  676
Feb 25th  cd4. Is  394.

This is just confusing me to no end.

[leatherman]

%CD4  27
Absolute CD4 676

Nurse practitioner put me on daily Bactrim when she saw my number so low.

what number is low? If your cd4% <= 15% and your absolute cd4 was <=200 you would need to be prescribed bactrim
https://i-base.info/ttfa/section-1/9-interpreting-cd4-results-cd4-count-and-cd4-percentage/

if you mean that you were previously prescribed bactrim, you can safely stop now.

 
My ID Dr. I have one the main one and a fellow the main one told me viruses and things like this doesn't affect viral load.  Not to worry.   
The fellow told me the opposite.  That it's can.

the only thing that will affect your viral load is taking ARVs. Adhere to the them daily and the HIV can't reproduce and the viral load goes down. Don't take ARVs or stop taking them, and your viral load will rise.

diseases/illnesses though will adversely affect your cd4 count. that count fluctuates a lot. Up to 100 points a day sometimes! cigarette smoking will rise them for an hour and them decrease for hours later. They are higher in the early evening and other times of the day. Exercise will first reduce the count before increasing (the opposite of what smoking does)

of course the cd4 count isn't a measure of healthiness. some people will high cd4s get sick and some with low counts never get sick.

   
Also the main Dr. Told me if I'm suppressed and undetectable.  I'm protected from other strains of hiv. If I had an encounter. 
The fellow said complete opposite.  That it doesn't and I would have extreme risk of getting a Resistant virus

in essence, your HIV meds act like PrEP so if you were exposed to HIV again (or another mutated version) then you would be protected.
resistance happens from haphazardly taking meds, allowing the level of meds to drop and rise, which gives HIV time to mutate against the meds.

the only way to get "reinfected" or have a "super infection" (i.e. infected again with a different strain) is for one person non-adherent to meds have sex with another person non-adherent to meds with a high viral load. There have only been a few cases of this. the best example was in the early years of meds when two HIV+ gay men were in the hospital at the same time. Both were there because they had stopped taking meds, had a very high viral load, and were hospitalized with other AIDS-defining illnesses. Amazing even that sick and hospitalized with AIDS, the two guys had unprotected sex with each other. Later testing showed that both had been re-infected with a different strain/mutation of HIV that came from the other partner.

(unfortunately, I have found that some healthcare professionals are ashamed or adverse to talking about healthy sex. It's easier to spread misinformation about sex or to try to discourage sex. especially surrounding gay sex or HIV+ sex. The old wives' tale about superinfection is always a sure winner to discourage a patients from doing the "nasty" and keeping a doc from talking about sex)

January 28th  cd4. 153
February 5th.  Cd4  676
Feb 25th  cd4. Is  394.

This is just confusing me to no end.

cd4s fluctuate. is the % holding stable?

[silguy618]

I'm not sure if it's stable waiting a few weeks for more blood work.  My ID said don't worry see you in 6 months.  But my primary was going over notes and noticed they haven't did my cd4 in St Louis ( where my ID is located). Since 9/23/19. 
She had been checking my numbers.  I actually had just started working out again.
Testosterone hrt .  But I'm so stressed at work and this I'm mentally and physically drained at night. 
My primary but me on Bactrim at the 153 mark. And said I need to be on it for at least a month to make sure I'm stable.  She believes that the high number is a fluke or false number because of the 3 they have did and have current results back. It was done at a different lab. 
She also follows alot of sites and agrees the VL like that isn't a blip.  Because of the number.  I have never ever missed a dose.  I think actually i took a double once.  Thought I hadn't taken it. And took a second dose.   
I have read everything I can. And see mild bumps in VL.  But nothing like mine at 964. Especially when I have adhered to the medication.  Never missed. 
I'm taking Biktarvy and was told it was the best. 
My ID fellow gives me one story.  Sickness and virus illness can cause cd4 to drop and VL to rise .  If I'm suppressed and taking my medication. I can still get infected with another resistance strain. 
Then Dr comes in.  Tells me as long as I'm taking my medication properly and suppressed nothing should affect my VL.   Not even a serious illness. 
And my Biktarvy will act as a prep also keeping me safe from others strains and resistances.    Both said don't worry ( was the only thing they was consistent on as well as see you in 6 months). 
They also said no need for Bactrim was a waste of resources. 
Primary said hell no.  She is following cdc guidelines for under 200.  Waiting for my Feb 28th  blood work to come back. And the primary did a resistance hiv test to see if anything changes.  She is also going to treat me just in case for any sti including the dreaded syphilis shot.   Instead of running the blood work and having to report anything.   
I like how she is aggressive in trying to get my numbers correct.   But I'm still extremely worried.
I have stopped working out because I  had been off for months.  And stopped after my big drop.  Didn't want to get sick from anything at the gym.  I missed enough work already 
Any help or suggestions would be great. I'm all by myself here  now

[skeebo1969]

I'm not sure if it's stable waiting a few weeks for more blood work.  My ID said don't worry see you in 6 months.  But my primary was going over notes and noticed they haven't did my cd4 in St Louis ( where my ID is located). Since 9/23/19. 
She had been checking my numbers.  I actually had just started working out again.
Testosterone hrt .  But I'm so stressed at work and this I'm mentally and physically drained at night. 
My primary but me on Bactrim at the 153 mark. And said I need to be on it for at least a month to make sure I'm stable.  She believes that the high number is a fluke or false number because of the 3 they have did and have current results back. It was done at a different lab. 
She also follows alot of sites and agrees the VL like that isn't a blip.  Because of the number.  I have never ever missed a dose.  I think actually i took a double once.  Thought I hadn't taken it. And took a second dose.   
I have read everything I can. And see mild bumps in VL.  But nothing like mine at 964. Especially when I have adhered to the medication.  Never missed. 
I'm taking Biktarvy and was told it was the best. 
My ID fellow gives me one story.  Sickness and virus illness can cause cd4 to drop and VL to rise .  If I'm suppressed and taking my medication. I can still get infected with another resistance strain. 
Then Dr comes in.  Tells me as long as I'm taking my medication properly and suppressed nothing should affect my VL.   Not even a serious illness. 
And my Biktarvy will act as a prep also keeping me safe from others strains and resistances.    Both said don't worry ( was the only thing they was consistent on as well as see you in 6 months). 
They also said no need for Bactrim was a waste of resources. 
Primary said hell no.  She is following cdc guidelines for under 200.  Waiting for my Feb 28th  blood work to come back. And the primary did a resistance hiv test to see if anything changes.  She is also going to treat me just in case for any sti including the dreaded syphilis shot.   Instead of running the blood work and having to report anything.   
I like how she is aggressive in trying to get my numbers correct.   But I'm still extremely worried.
I have stopped working out because I  had been off for months.  And stopped after my big drop.  Didn't want to get sick from anything at the gym.  I missed enough work already 
Any help or suggestions would be great. I'm all by myself here  now

I know how stressful this must be for you.  I went through something very similar about two years ago.  My vl remained undetectable while my cd4's continued to drop.  At the same time the level of fatigue I was experiencing  was gripping me and making life at work unbearable. 

I went through this for a good year.  I was soaking the bed with night sweats and really started doubting every word my doctor was saying. 

My doctor decided to do a MRI.  I don't recall what exactly pushed her to do this but it ended up leading to a lot of answers to an underlying issue I have dealt with for about 13 years.  My intestines were racked with infection from a condition called diverticulosis.  As I mentioned, it was something I knew I had, but for some reason this time there was absolutely no pain involved.  The MRI showed so many inflamed areas, it was even in my colon, which was different from all the other instances that have put me in the hospital.  The infection was pretty bad and it took months to get it all under control.  Once we got most of the infection cleared up the night sweats stopped and my Cd4's slowly started getting higher.

Now I am in no way implying that you have either divirticulitis, or the condition divirticulosis.  But, if your numbers on these next labs still show a decline it could be a sign of some other underlying issue not related to HIV.

Our bodies are pretty amazing at letting us know something is wrong.  I hope your next labs show improvement.  I know it's easier said than done, but try not to stress yourself over this.  That will only make things worse.

Please keep the forum updated.

Thomas

[JosephP]

They also said no need for Bactrim was a waste of resources. 
Primary said hell no.  She is following cdc guidelines for under 200.  Waiting for my Feb 28th  blood work to come back. And the primary did a resistance hiv test to see if anything changes.  She is also going to treat me just in case for any sti including the dreaded syphilis shot.   Instead of running the blood work and having to report anything.   
I like how she is aggressive in trying to get my numbers correct.   But I'm still extremely worried.
I have stopped working out because I  had been off for months.  And stopped after my big drop.  Didn't want to get sick from anything at the gym.  I missed enough work already 
Any help or suggestions would be great. I'm all by myself here  now

Seems to me like a tug-of-war between your Primary and the ID! Go back and work out. It'll do you good!

[leatherman]

She is also going to treat me just in case for any sti including the dreaded syphilis shot.   Instead of running the blood work and having to report anything.

that's not at all how STIs should be treated! If your doctor is going to "treat" you for diseases you don't have, that's medical malpractice. Demand to have testing done and don't take any medication for any diseases you don't have.

[silguy618]

I know how stressful this must be for you.  I went through something very similar about two years ago.  My vl remained undetectable while my cd4's continued to drop.  At the same time the level of fatigue I was experiencing  was gripping me and making life at work unbearable. 

I went through this for a good year.  I was soaking the bed with night sweats and really started doubting every word my doctor was saying. 

My doctor decided to do a MRI.  I don't recall what exactly pushed her to do this but it ended up leading to a lot of answers to an underlying issue I have dealt with for about 13 years.  My intestines were racked with infection from a condition called diverticulosis.  As I mentioned, it was something I knew I had, but for some reason this time there was absolutely no pain involved.  The MRI showed so many inflamed areas, it was even in my colon, which was different from all the other instances that have put me in the hospital.  The infection was pretty bad and it took months to get it all under control.  Once we got most of the infection cleared up the night sweats stopped and my Cd4's slowly started getting higher.

Now I am in no way implying that you have either divirticulitis, or the condition divirticulosis.  But, if your numbers on these next labs still show a decline it could be a sign of some other underlying issue not related to HIV.

Our bodies are pretty amazing at letting us know something is wrong.  I hope your next labs show improvement.  I know it's easier said than done, but try not to stress yourself over this.  That will only make things worse.

Please keep the forum updated.

Thomas

Thomas. 
My last cd4 was above 200 it's the VL I'm so worried about.  I have been undetectable since I started my medication. And now after my illness I have not a bump in my opinion.  But a big spike almost a 1000.   That's main concern. I tested undetectable two weeks after my virus. Less than 30 days later I'm almost a 1000. 
I'm also dealing with chills and night sweats.  General muscle aches and fatigue.  Plus stress and work.  Getting to much.  I finally accepted my diagnosis and moved on after my first year.  And was confident in my medication (Biktarvy).  Never missing a dose and now this. 

[silguy618]

Just a update.   Well  I redid my labs after the Feb 25th VL reading 962.  After being undetectable since I started my medication.   Two days later Feb 27th. Re ran all blood work.   This time it's undetectable.  Lab told my Dr today it had to be a lab error.  That they have never seen one go undetectable 25 days later 962. Then 2 days after that back undetectable. 
So it was a total fluke I suppose.  Thank God