2 weeks positive, VERY low CD4

[bradley2023]

Hi, I just wanted to get some honest opinions from the community.  So with that said, I will give a little background.

I'm a 45yo male, quite healthy overall, workout 7 days a week, and pretty much never get sick (or should say I never have symptoms).  My wife is 37 and a bit more susceptible to illness as she's quite tiny.  Recently went in for a checkup for her because of an ongoing problem they couldn't figure out and the Internal Medicine doctor threw out the idea of an HIV test just to sort of rule it out.  We casually accepted it and awaited the results.

Hopefully there's not too much judgement on this site, but prior to being married, let's just say my wife and I were quite open with our sexuality while single.  Personally, I was young, handsome, and quite frankly, stupid.  My wife wasn't nearly as bad, but she was no angel herself.  We openly talk about it and accept our pasts and we're happy together.  Since being married, we've also participated in group sex.  Enough said.

I honestly don't know the last time I had an HIV test (maybe in the back of my head it was always "ignorance is bliss", and the fact that I never get sick).  You already know where this is going.  Wife tested positive.  She handled it quite stoically.  I tested a week later, but we already assumed I was positive as well, since we've been married so long.  I'm very pragmatic and have done quite a bit of Internet research about HIV and living with it through meds, etc.  So I was prepared and honestly not too worried about it from a health standpoint, but rather from a stigma standpoint and how it could impact my job, etc.

Then I got my results.  My CD4 levels were shockingly low.  And based on Dr. Google, it means I have full blown AIDS I believe.  My CD4 is 28 and my wife is at 84.  And according to Google, that means I have had HIV for a long time.  Not shocking I suppose.  I still feel my normal self.  I still go to the gym daily, eat healthy, no sickness (symptoms) that I'm aware of.

Mine: Viral load 71,000; CD8% 47.07; CD8 668; CD4% 1.96; CD4 28; CD4/CD8 0.04
Wife's: Viral load 1,250,000; CD8% 51.85; CD8 531; CD4% 8.22; CD4 84; CD4/CD8 0.16

Sorry if that's too much information, or too specific, but I figured it might help with the bigger picture.

I guess my question is for honest feedback/opinions/etc.  I'm a realist.  I don't like beating around the bush and I just want to know if people with CD4 levels as low as my wife and I have, are we F#@$&D, or are we also able to have a realistic shot at getting the disease under control with the use of the medications we were prescribed (Acriptega and Cotrimoxaxole)?  I've read that generally within 6 months it can be turned around and at some point a positive person can even be undetectable.  However, I don't know if we should get our hopes up and if that's a realistic possibility, or what reality is.  Don't worry, we're not fatalistic in our thinking or anything, like I said, just very pragmatic with the condition and what we need to do to be our healthiest selves.

Sorry for the dissertation.  And thank you ahead of time for any replies.

[Jim Allen]

Hiya,

Sorry to hear about the diagnosis, but glad to hear you have access to healthcare and have started treatment.

I guess my question is for honest feedback/opinions/etc.  I'm a realist.  I don't like beating around the bush and I just want to know if people with CD4 levels as low as my wife and I have, are we F#@$&D, or are we also able to have a realistic shot at getting the disease under control with the use of the medications we were prescribed (Acriptega and Cotrimoxaxole)?  I've read that generally within 6 months it can be turned around and at some point a positive person can even be undetectable.  However, I don't know if we should get our hopes up and if that's a realistic possibility, or what reality is.  Don't worry, we're not fatalistic in our thinking or anything, like I said, just very pragmatic with the condition and what we need to do to be our healthiest selves.

The reality is you will still need a retirement plan.

If you continue to take your treatment, the viral load should soon be suppressed (undetectable).

Most people have a fully suppressed viral load within a few weeks/months after starting treatment, sometimes, it takes slightly longer than 6+ months. Once suppressed, HIV can't do unchallenged measured and unmeasured damage to you, and your immune system can start to "heal" for lack of a better phase.

Since being married, we've also participated in group sex.  Enough said.

I added both of you to my "Must invite to a party" list.

So I was prepared and honestly not too worried about it from a health standpoint, but rather from a stigma standpoint and how it could impact my job, etc.

Don't tell them, unless where you live, there is a requirement for them to know.

Best, Jim.

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

[Tonny2]

             ojo.            Hello there!… may I ask? Where are you from?, it is just for the medication that you’re taking.


Welcome to the forum, I am glad that you two are already on treatment… I slime I asked you take your medication as prescribed, as you will be OK. Your medication will start to suppress the virus which is what it does, your cd4 is a different story but eventually they will go up… about the stigma, you don’t have to tell anybody about your diagnosis, I’ve been leaving with HIV/AIDS Almost Twentynine Years and just My Family knows about my diagnosis, by the way, I, like you, West, diagnosed with aids, only 20 cd4, now UD for 19 years and 1040 cd4 so, there’s hope.. please keep us posted and good luck. You are not alone. We are here for you two

[zach]

Don't apologize to us for venting. Dump it out, its what the site is for.

Many of us had single digit cd4 counts at diagnosis. Don't let any lab number scare you, those numbers don't define you or how you feel. My advice? Ignore them if it gets overwhelming, just take your meds.

That's an excellent med you're on, be confident. Your job is to take that pill every day.

You're gonna be ok, no bullshit.

[bradley2023]

Hiya,

Sorry to hear about the diagnosis, but glad to hear you have access to healthcare and have started treatment.

The reality is you will still need a retirement plan.

If you continue to take your treatment, the viral load should soon be suppressed (undetectable).

Most people have a fully suppressed viral load within a few weeks/months after starting treatment, sometimes, it takes slightly longer than 6+ months. Once suppressed, HIV can't do unchallenged measured and unmeasured damage to you, and your immune system can start to "heal" for lack of a better phase.

I added both of you to my "Must invite to a party" list.

Don't tell them, unless where you live, there is a requirement for them to know.

Best, Jim.

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

Thanks Jim, appreciate the feedback and optimism.  Our partying days are over!  We're a bit freaked out at the thought of sex right now, since our situation is so new to us, but we realize that will pass in time.  I'm sure everyone in this situation has had the same feeling.  The wife is having a pretty rough time with the side effects to the meds, but she's sticking to them and we will do our 1st checkup in a few weeks.  Cheers!

[bradley2023]

             ojo.            Hello there!… may I ask? Where are you from?, it is just for the medication that you’re taking.


Welcome to the forum, I am glad that you two are already on treatment… I slime I asked you take your medication as prescribed, as you will be OK. Your medication will start to suppress the virus which is what it does, your cd4 is a different story but eventually they will go up… about the stigma, you don’t have to tell anybody about your diagnosis, I’ve been leaving with HIV/AIDS Almost Twentynine Years and just My Family knows about my diagnosis, by the way, I, like you, West, diagnosed with aids, only 20 cd4, now UD for 19 years and 1040 cd4 so, there’s hope.. please keep us posted and good luck. You are not alone. We are here for you two

Thanks Tonny.  Reading about your initial low CD4 count and current status took a huge weight off my shoulders.  I'll still be cautiously optimistic, patient, and diligent until I see the numbers change, but hearing your success was really nice.  I'm from the States, but living in Southeast Asia for quite a while now.

[bradley2023]

Don't apologize to us for venting. Dump it out, its what the site is for.

Many of us had single digit cd4 counts at diagnosis. Don't let any lab number scare you, those numbers don't define you or how you feel. My advice? Ignore them if it gets overwhelming, just take your meds.

That's an excellent med you're on, be confident. Your job is to take that pill every day.

You're gonna be ok, no bullshit.

Excellent advice, thank you.

[zach]

About your wife's side effects

This is just my opinion based on experience

Doubt it's side effects. Maybe a little adjustment.

There is an immune response when you first go on meds. The body has the weapon to fight the bug now. It goes to war, during that battle maybe feel flu like.

It's called I.R.I.S, immune response irration syndrome (somebody correct if I'm off on that wording)

Either way, expect both of you to adjust quickly.

[leatherman]

immune response irration syndrome

close.
Immune reconstitution inflammatory syndrome
inflammatory and irritation are certainly close to synonymous in this case

We're a bit freaked out at the thought of sex right now, since our situation is so new to us, but we realize that will pass in time.  I'm sure everyone in this situation has had the same feeling.  The wife is having a pretty rough time with the side effects to the meds, but she's sticking to them and we will do our 1st checkup in a few weeks.

med side effects, immune system doing it's thing....I bet y'all never expected that getting healthier could make you feel worse?! LOL

I know there are a lot of mental/emotional and physical issues right now; but keep in mind that after being UD for 6 months, you can no longer transmit HIV.  That should make sex a little less worrisome in the not so distant future.

[Tonny2]

             ojo.             @OP…I suppose your doctor or the health department adviced you to anonymously let your sex partners to recommend them to get tested for hiv, didn’t him?…you and your wife will be ok because you got tested, let’s give your sex partners the same opportunity to start treatment before it’s too late for them.


Ps. I always thought that IRIS present it's elf only if you had an OI when starting treatment and a good immune response, I might be wrong

[leatherman]

Ps. I always thought that IRIS present it's elf only if you had an OI when starting treatment and a good immune response, I might be wrong

What happens is that your immune system can be so severely compromised that it's simply unable to mount any response at all. Once you start meds, the HIV is blocked from reproducing and killing off cd4s. Cd4s start to recover/multiple until there are enough to give a response. To the patient who hasn't felt sick (because their body hasn't been fighting off any germs), they may start to get sick as their immune system finally has enough umph to start fighting off the viruses and bacteria that have actually been hanging around unmolested by their too weak immune system.

So getting healthier (with an improving immune system) after starting meds can actually mean getting sick for a while as your body/immune system starts to really work again.

[bradley2023]

About your wife's side effects

This is just my opinion based on experience

Doubt it's side effects. Maybe a little adjustment.

There is an immune response when you first go on meds. The body has the weapon to fight the bug now. It goes to war, during that battle maybe feel flu like.

It's called I.R.I.S, immune response irration syndrome (somebody correct if I'm off on that wording)

Either way, expect both of you to adjust quickly.

Lucky for me, I haven't felt any difference.  She's feeling quite better now, thankfully!

[bradley2023]

I know there are a lot of mental/emotional and physical issues right now; but keep in mind that after being UD for 6 months, you can no longer transmit HIV.  That should make sex a little less worrisome in the not so distant future.

Looking forward to it!

[bradley2023]

             ojo.             @OP…I suppose your doctor or the health department adviced you to anonymously let your sex partners to recommend them to get tested for hiv, didn’t him?…you and your wife will be ok because you got tested, let’s give your sex partners the same opportunity to start treatment before it’s too late for them.

Ps. I always thought that IRIS present it's elf only if you had an OI when starting treatment and a good immune response, I might be wrong

Oddly enough, the doctor didn't mention that, but it's something we already discussed.  The only problem is, since it was a group activity and it was anonymous, we don't have the slightest idea how to contact anyone.  That thought weighs a bit heavy on my mind, but I really don't know how to search for them.

[Tonny2]

          ojo.           Hi there!…well, I guess there’s nothing you can do about it, I just hope some of you were practicing safer sex…wishing you the best and please keep us posted.                                    ojo

[leatherman]

Lucky for me, I haven't felt any difference.  She's feeling quite better now, thankfully!

Great news! From both of you!
Stick to the meds and things will continue this way

Oddly enough, the doctor didn't mention that, but it's something we already discussed.  The only problem is, since it was a group activity and it was anonymous, we don't have the slightest idea how to contact anyone.  That thought weighs a bit heavy on my mind, but I really don't know how to search for them.

this is a thing called contact tracing, and it's usually done by the state's health department. People who have been diagnosed with HIV are asked to list anyone whom they may have had sexual contact with. These people are contacted anonymously by the health dpt and told they may have been at risk for HIV and should get tested. Evidence has shown that contact tracing has gotten a lot of people diagnosed who might have not been diagnosed until later.

A lot of people simply don't test regularly and can go years without knowing their positive status. Not only does that mean that these people aren't getting treated early before HIV can get a good foothold in their systems; but they are transmitting HIV without knowing it. Don't feel like I might be talking about you about  this because many of us here were in the same boat. It wasn't until health problems developed before we knew our HIV+ status. (For me, it was my first partner having gastro (Crohn's disease) health issues before he and I got tested. My second partner didn't get tested until he was sick with cancer in the hospital) Sadly, it's just how it happens a lot of the time.

But, if you don't know names, then you don't know names. Those people are as much adults as you and took the same kind of risk as you. Maybe one of them is HIV+ and hasn't been tested yet. You never know. Hopefully they'll get tested before they get to the point of being sick or very immune compromised.

[bradley2023]

I have a question regarding traveling with medications.  So I travel quite a bit for work, and sometimes I have to go for more than 1 month.  I would need to have 1 bottle or more with me, and I was curious if anyone had any firsthand experience with Customs in other countries and if we are required to account for our medications with a doctor's prescription.  It's one thing to say "Yeah these are my blood pressure medications", but it's a whole different animal saying "Yeah, I'm HIV+ and these are my medications"...for obvious reasons.  I realize a Customs officer wouldn't really know what the medications are used for, but on my doctor's prescription it literally says HIV.  Also, it's one thing to have blood pressure meds confiscated because they can easily be attained, but not sure about our special pills.  I considered typing up a small note and laminating it and putting it in my medication bag that explains my situation and politely asks for privacy and empathy (?).  Just a preemptive measure.  Appreciate the insight!

[Jim Allen]

Pre-covid, I travelled 4-5 times per year within the EU and 2-3 times a year outside the EU.

It was never a problem; I always kept my meds in my hand luggage in their original packaging and was never asked or questioned about it. I always carried a letter from my GP stating that the meds are for personal use and treatment of a manageable condition should I ever be asked.

The only time I was ever asked about it was my own fault, as I had left the bottle in my fleece/jacket pocket at the time instead of my hand luggage, and even then, it wasn't an issue.

Make sure to check you are not travelling somewhere with restrictions. https://www.hivtravel.org/

[Jim Allen]

I considered typing up a small note and laminating it and putting it in my medication bag that explains my situation and politely asks for privacy and empathy (?)

Risking a free prostate exam.

[leatherman]

I realize a Customs officer wouldn't really know what the medications are used for, but on my doctor's prescription it literally says HIV.

explain your situation to your doctor and have that changed. There's no reason for a prescription to say HIV, just the medication names. Or get them to write up something like Jim had:

I always carried a letter from my GP stating that the meds are for personal use and treatment of a manageable condition

Also while traveling here are a few tips:
do not put your meds into checked luggage. always keep it in your carry-on. If your luggage is lost, your meds won't be.

always take more meds than you will need. Don't forget that weather (hurricanes, snow storms) and other obstacles (union strikes, volcanic ash, forest fire smoke, etc) can delay flights for days. The last thing you would want is to be delayed 3 or 4 days and out of meds.

[bradley2023]

Just an update after our 3 month checkup.

Initial numbers:
Me:  71,000 viral load; 28 CD4
Wife:  1,250,000 viral load; 84 CD4

Now:
Me:  Undetectable viral load; 72 CD4
Wife:  32 copies/ml (whatever that means, that's what the doc told me); 283 CD4

So it looks like we're trending in the right direction!  Have been SUPER diligent with the meds, never missing a dose.

Side note 1:  I'm quite healthy, gym daily, but have taken too many (legal) supplements for many years, and never had any kidney issues in the past.  However, my kidney function seems to be quite affected.  Doctor is monitoring and might have to switch up my meds if it doesn't get better.  Anyone else have this issue in the past?  (I have no "symptoms" related to my renal function, but the numbers were quite worrisome to my doctor.)

Side note 2:  Any idea why my wife's Viral Load was so much higher (and continues to be), relative to mine?  What factors influence a Viral Load?  I understand what it is, just wondering if it has anything to do with the time it's been in the system, or if it's anything else I'm unaware of.

Thanks for everyone's help and encouragement!

[Jim Allen]

Hiya.

Side note 2:  Any idea why my wife's Viral Load was so much higher (and continues to be), relative to mine?  What factors influence a Viral Load?  I understand what it is, just wondering if it has anything to do with the time it's been in the system, or if it's anything else I'm unaware of.

Undetectable when discussing treatment is a bit of a misleading or misunderstood phrase from the lab; that's the first thing to get your head around.

You and your wife's viral load are both fully suppressed "undetectable" and I'll explain why in brief, so most labs have a threshold nowadays of 50 copies or 20 copies, meaning they can't count viral copies below that threshold. Results will often still read something like "Detected x copies" or "Detected but less than X copies" if the value is below the threshold that can be measured.

You can also get a result that is just "undetectable." However, even that does not mean zero viral load. It just means it was too low to detect for the test in the small sample.

In new HIV treatment studies, the goal is to suppress below 50; In the clinical (treatment) standpoint, anything below 50 copies is also considered fully suppressed, although tests nowadays can often detect down to 20 copies. There is no clinical difference between having 20 or 50 copies and very little evidence or contradicted evidence that even a few hundred copies would make any difference.

In some research studies, hypersensitive testing can detect and count as low as a single copy. There, however, is no point in having that in the clinical setting as these low values are often defective copies, not viable HIV, and there is simply no clinical benefit.

To confuse matters a bit more, regarding sexually passing on HIV (TaSP) (U=U), undetectable is defined differently again. Once you have achieved an undetectable viral load defined as (below 200 copies) for at least six months, you can't sexually pass on HIV.

Side note 2:  Any idea why my wife's Viral Load was so much higher (and continues to be), relative to mine?  What factors influence a Viral Load?  I understand what it is, just wondering if it has anything to do with the time it's been in the system, or if it's anything else I'm unaware of.

Things that can influence viral load without HIV treatment include other STIs, Age, Time and Sex for example.

[Jim Allen]

Side note 1:  I'm quite healthy, gym daily, but have taken too many (legal) supplements for many years, and never had any kidney issues in the past.  However, my kidney function seems to be quite affected.  Doctor is monitoring and might have to switch up my meds if it doesn't get better.  Anyone else have this issue in the past?  (I have no "symptoms" related to my renal function, but the numbers were quite worrisome to my doctor.)

Are you still taking any supplements now you started HIV treatment? If so you might want to stop the supplements or at least clear it with your healthcare provider.

I'm not sure what you mean by worrisome, did they give you the details? Anyhow, you just started treatment so things can be off at first, and one result being out of range isn't really a concern unless it's a trend but glad to hear they will monitor it.


Far more important question: how are you both feeling & doing?

P.S. Don't forget to write these questions down and ask your doctor the next time you see them.

[leatherman]

So it looks like we're trending in the right direction!  Have been SUPER diligent with the meds, never missing a dose.

it doesn’t just look like you’re trending in the right direction – y’all ARE trending in the best direction!  Both of you have had a great improvement in just a few months. Many people take a lot longer, so this is great news. Enjoy the satisfaction of taking proper, diligent care of your health.

Side note 2:  Any idea why my wife's Viral Load was so much higher

Things that can influence viral load without HIV treatment include other STIs, Age, Time and Sex for example.

Not to mention the most obvious thing – you are separate people. LOL They call it “practicing medicine” because everybody's body is a little different…..but thankfully we’re enough alike that medications work for most of us. You and your wife have different cd4 counts, different viral loads, and you’re both reacting to the medications in you own unique way.

P.S. Don't forget to write these questions down and ask your doctor the next time you see them.

this ^ (besides "take your daily meds") is one of the best pieces of HIV treatment advice you'll ever get. After thirty-one years of HIV treatment, I still enter every appointment with my doctor holding a slip of paper that has my last cd4 and vl results along with any questions I might have about my treatment or my health.

[bradley2023]

Thanks for the help.  Great explanation!

Unfortunately, I've had to stop taking all of them.  My creatinine levels were ~160, then the following 2 months they were ~170 (with no supplements).  Admittedly, I probably could stand to drink more water throughout the day.  Plus, I figure all the exercise and muscle breakdown is having an affect as well.  Anyways, I'm due to do monthly checkups for my kidneys, and I believer every 3-6 months for CD4 and Viral Load.

In terms of how my wife and I are feeling, we both feel...normal.  We were just talking about it today and the only reminder of our condition is the daily pill routine.  But other than that, it's life as usual:  Work, gym, dinner and TV/movie/games, etc.  I almost feel guilty that it sort of feels like it's not a big deal and it's barely a speed bump in our lives.  Despite understanding the severity of it.  We're typically very positive people, so we try to never even think about the negative side of things.  (Perhaps why we got into this predicament in the first place...lol)

I will say though, this forum has been huge for us.  The knowledge and support you all provide are fantastic.  I think you all do a great job of being honest, realistic, hopeful, and help to keep people away the ledge, so to speak.  So thank you.  Seriously, it's much appreciated.

Are you still taking any supplements now you started HIV treatment? If so you might want to stop the supplements or at least clear it with your healthcare provider.

I'm not sure what you mean by worrisome, did they give you the details? Anyhow, you just started treatment so things can be off at first, and one result being out of range isn't really a concern unless it's a trend but glad to hear they will monitor it.


Far more important question: how are you both feeling & doing?

P.S. Don't forget to write these questions down and ask your doctor the next time you see them.

[Jim Allen]

I almost feel guilty that it sort of feels like it's not a big deal and it's barely a speed bump in our lives.

Don't feel guilty. When you have access to treatment, HIV simply isn't a big deal in life unless you let it. There are far bigger issues in life and medically more difficult-to-treat conditions most of us have or will have to deal with at some point in life.