Welcome, Guest. Please login or register.
November 17, 2018, 02:03:40 am

Login with username, password and session length


Members
Stats
  • Total Posts: 737780
  • Total Topics: 61119
  • Online Today: 342
  • Online Ever: 1421
  • (August 13, 2016, 05:18:44 am)
Users Online
Users: 2
Guests: 223
Total: 225

Welcome


Welcome to the POZ Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: Newly diagnosed with low CD4 count  (Read 1706 times)

0 Members and 1 Guest are viewing this topic.

Offline Kingofhearts517

  • New Member
  • Posts: 2
Newly diagnosed with low CD4 count
« on: July 10, 2018, 07:29:46 pm »
Hi everyone,
Iíve been trolling these forums for a little while so I figured itís time for me to make an introduction.

I was diagnosed with HIV April 27, 2018. I had no idea That i had it or who I got it from. I found out through a series of blood tests that were initially only supposed to check my thyroid. Needless to say, I was sad and scared. But Iíve made peace with it for now.

A month ago, I was told from my doctor that my viral load was 20,000 and my cd4 was 209. So if Iím understanding correctly, under 200 would be considered AIDS?

Anyways, could my viral load of 20,000 indicate how long I may have had the virus?

I started Genvoya right after this appointment and I go in Friday to get more blood drawn so they can see how the medicine is working. Hopefully I hear good news. Iím glad to see a community for people dealing with this. Iím in the process of going to grad school to become a counselor. Maybe Iíll get the chance to counsel people who have HIV as well.

Offline Ptrk3

  • Global Moderator
  • Member
  • Posts: 2,513
Re: Newly diagnosed with low CD4 count
« Reply #1 on: July 10, 2018, 07:45:53 pm »
Sorry to read of your diagnosis, but glad that you started immediately on Genvoya and have found these forums for support and guidance.

Yes, the CDC considers a CD4 below 200 to be AIDS, but, these days, that is really just for surveillance purposes (geographic) in order to best focus and expend resources (human and financial).

Few practitioners use that terminology today, preferring various stages of HIV-disease.

In other words, don't get hung up on a word.

No, it really is difficult to determine from a viral load when the infection began.  Don't bother:  that is just a rabbit hole.

Focus on your future good health.

Adhere to your Genvoya regimen and your viral load will quickly become undetectable (if it isn't already) and your CD4's will rise.

You will live a long and healthy life.
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 lightalltheway

  • Member
  • Posts: 75
Re: Newly diagnosed with low CD4 count
« Reply #2 on: July 11, 2018, 03:25:15 am »
Hello and welcome to this forum,

I am glad that you started your treatment already. You will notice eventually that HIV does not define you but you will define this little virus. It will make you more aware about how you can maintain your health.

As probably you already know that AIDS is late stage. But it can not be used to indicate your overall condition. I can truly understand what does it mean to not knowing how did you contract the virus, but do not overthink .. what matters is moving forward.

Light all the way,
Prince

Offline Tonny2

  • Member
  • Posts: 2,169
Re: Newly diagnosed with low CD4 count
« Reply #3 on: July 11, 2018, 02:52:42 pm »

      ojo.       Hello king, welcome to the club... I'm glad you found us, you are not alone anymore.

At this point, doesn't matter when it who infected you, what it matters is that you are HIV positive so you can be treated... don't worry about your low cd4 level, mine was only 20, as a matter of fact, at one point, my cd4 were zero, 23 years later, my cd4 between 700-800... so, all you have to do now is, take your meds (IMG, just one pill a day, I take four, twice a day ;( ), as ordered and try to keep a good attitude, this formula has worked for me during this last 23 years, in sure, it will work for you too... life goes on... please keep us posted... hugs.          ojo

Offline CaveyUK

  • Global Moderator
  • Member
  • Posts: 1,577
Re: Newly diagnosed with low CD4 count
« Reply #4 on: July 12, 2018, 05:23:13 pm »
Hi and welcome.

Not much more to add to the others really. In the US, they still have a definition of AIDS=CD4<200 but thats not the case in all other countries, where you would need to have an AIDS-defining illness to get classified as such (like the UK). As has been said, even in the US it is a term being used less and less these days. So don't get hung up on the terminology.

I was diagnosed at 160 with a vl of 70k, and treatment got me on an upward trajectory almost immediately so your numbers are fine in the big scheme of things. Give it a few months on treatment and you will be UD and have a much less scary CD4 count. You just need to ensure you are adherent from then on, as keeping the virus undetectable is key to living a long and healthy life.

Forget trying to work out when you picked up the virus. Your VL won't tell you, nor will your CD4. There are so many variables, including genetic ones. I have always assumed I had the virus for around 4yrs prior to diagnosis because that was the only significant and unexplainable illness I'd had, and it followed a pretty risky event. Since then, I've started questioning myself and in reality I may have had it for far longer. It's all pretty much irrelevant though - it's all about getting on the meds and staying adherent, knowing the length of time infected doesn't give me any advantage in any way!
HIV - 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 Loa111

  • Member
  • Posts: 71
Re: Newly diagnosed with low CD4 count
« Reply #5 on: July 14, 2018, 05:43:40 am »
Hi there! Welcome to the club we donít want to be a member of! 🙂

I was Dxíed a week after you, on genvoya too 7 weeks approx. I was quite sick n now I starting to feel better. We just got to make sure we take that pill exact n strict and get on with life. Its early days for me, as I have s cd422, so getting a lot of monitoring, so Iím hoping things will get stable in a few months.

Sometimes I go through Who, what, where, how, wtf moments, and since itís early days itís on my mind a lot but I enjoy when I forget about it! I guess this is normal for newbies like us and will ease in time.

Offline JosephP

  • Member
  • Posts: 252
  • Keep looking FORWARD... Dx'd 8/10/2013...
Re: Newly diagnosed with low CD4 count
« Reply #6 on: July 14, 2018, 04:17:14 pm »
 :) As many have expressed here, it doesn't matter how long have you had it or who gave it to you! Concentrate in getting better and take your medication religiously. I am, also, on Genvoya and has been pretty good to me. When I was dx'd, I had a cd4 count of 198! So I classified for the check mark 'AIDS'. My VL was 78,000; higher than yours but less than some other guys. I also asked when was I infected and doctor told me that it was impossible to tell. It could have been years before and be a slow progressor or a week before and be a fast progressor. She told me not to worry and I am following her advise. Three months with medication and my viral load had dropped to 21. Have been undetectable ever since. :)
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 JosephP

  • Member
  • Posts: 252
  • Keep looking FORWARD... Dx'd 8/10/2013...
Re: Newly diagnosed with low CD4 count
« Reply #7 on: July 14, 2018, 04:20:18 pm »
Forget trying to work out when you picked up the virus. Your VL won't tell you, nor will your CD4. There are so many variables, including genetic ones. I have always assumed I had the virus for around 4yrs prior to diagnosis because that was the only significant and unexplainable illness I'd had, and it followed a pretty risky event. Since then, I've started questioning myself and in reality I may have had it for far longer. It's all pretty much irrelevant though - it's all about getting on the meds and staying adherent, knowing the length of time infected doesn't give me any advantage in any way!

Right on spot! No need to spend energy on how, where and when! It is with us and we have to make the best of it!
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 kentfrat1783

  • Member
  • Posts: 234
Re: Newly diagnosed with low CD4 count
« Reply #8 on: July 15, 2018, 09:43:57 am »
Hi,

I thought I would give you my thoughts but I think they have already been given by the other forum members.

From what I have been by all of my doctors they only call having HIV nowadays as just a condition.  Yes, technically in the US if your CD4 count is less than 200 it is AIDS but I have yet to have any of my doctors or state nurses call it that. 

Once you start treatment your VL will drop to undetectable quickly.  I started at nearly 170k and within a few months, I was UD. 

Just make sure to take your Rx at roughly the same time each day and make sure to ask questions on how to take it.  Such as with food, without food, water, the best time of day, etc.  I take mine at night before I go to bed so it works for me.  I also set a reminder on my phone to help me not forget. 

Now for me I was Dx'd late so I started with a CD4 of 2, VL of roughly 170k, PCP pneumonia and a few other things.  So I was Dx'd with an opportunistic infection but I am doing so much better today.  A year later my CD4 count is now over 100 and will soon be able to get off one of my Rx's I take.  The pills aren't that bad as it's just part of my daily routine. 

I know I pay attention to the numbers but I'm to the point of just making sure they are heading in the correct direction.  I'm sure I will be getting blips as time goes on but just eat right, exercise and continue enjoying your life. 

Just remember to ask your doctor questions in addition to finding a doctor that makes you feel comfortable.  If you can't talk to your doctor then you haven't found the best doctor for you.  Also, if you have problems paying the co-pays check with the manufacturer to see if they have any co-pays cards.  Just a thought.

Wishing you the best.

Kenneth
08/28/2018 - CD4 166 (15%)  VL - <20
05/08/2018 - CD4 106 (11%)  VL - <20
03/05/2018 - CD4   90 (10%)  VL - <20
12/11/2017 - CD4   60 (  8%)  VL - The hospital forgot to run
09/07/2017 - CD4   42 (  6%)  VL  54        (1.70)
05/11/2017 - CD4     2 (  1%)  VL 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: USA

Offline MarkintheDark

  • Member
  • Posts: 76
Re: Newly diagnosed with low CD4 count
« Reply #9 on: July 15, 2018, 12:20:37 pm »
Welcome King --

Speaking as a long term survivor, everything in this thread is spot on.

I'll expand on what @kentfratt alluded to.  Initially it's pretty normal to laser focus on numbers as we try to figure out what that alphabet soup of values means.  I'm UD and CD4 is in the low 200s (new therapy) after being in the mid-100s for years.  You'll likely establish a range that's normal for you on this therapy.  I've had blips either way, but I tend to look at longer term now.

What has come to be more important to me is how do I feel?  But it's an acquired habit.  Simply, it gets me out of not being able to see the forest for the trees. 
HIV dx - 02/93
AIDS dx - 07/01
Rilpivirine/Cabotegravir guinea pig since 01/17

Offline leatherman

  • Member
  • Posts: 7,459
  • Google and HIV meds are Your Friends
Re: Newly diagnosed with low CD4 count
« Reply #10 on: July 15, 2018, 03:56:15 pm »
technically in the US if your CD4 count is less than 200 it is AIDS but I have yet to have any of my doctors or state nurses call it that.
using the word "AIDS" is an issue muddied by history and stigma.

In the beginning of the epidemic, before the human immunodeficiency virus (HIV) was discovered, people were already sick and dying of a heretofore unknown disease. This "collection" of opportunistic infections and death was called AIDS ("acquired immune deficiency syndrome"). Eventually as more knowledge was gained, HIV infection became defined in 4 basic stages:

1) Acute HIV Infection (a short period of time right after initial infection)

2) Chronic HIV Infection - asymptomatic HIV infection (once infected, a person is always infected, hence it is a chronic condition. Asymptomatic means without symptoms. Successfully treated patients (those whose HIV is virally suppressed i.e. undetectable) are in the category)

3) Chronic HIV Infection - symptomatic HIV infection (once infected, a person is always infected, hence it is a chronic condition. Symptomatic means with symptoms. UNtreated patients, and often those in the earliest days of treatment who are still dealing with OIs, are in the category)

4) Advanced HIV Infection - formerly known as "AIDS" (patients with low cd4s and high viral loads, and OIs are in this category. Many public health organizations and departments consider AIDS to be defined as the situation at a cd4 <200 and at least one opportunistic infection.)

so historically we called it "AIDS" before knowing what caused the syndrome of health issues, instead of using the more accurate "advanced HIV". Now, we're trying to switch to "advanced HIV" because it's more technical and accurate, and because of the stigma and negative connotations surrounding the word "AIDS". However, if your cd4 is <200 and you have an OI, then you technically have "AIDS". Nowadays in America, just being <200 cd4s is referred to as AIDS or advanced HIV because that allows a broader range of people (people with less than 200 cd4s who are with or without OIs) to receive treatment (to qualify through various funding options like the Ryan White Care Act).

I'm sure I will be getting blips as time goes on
blips (viral load jumps of over 2000 or more) are fairly rare on successful treatment (ie viral suppression/undetectable). Often they are attributable to lab error if the patients are still being adherent to their regimen) However, "micro-blips" (not a real thing. just something the forum members use to describe the relatively minor fluctuations (<1000) in HIV viral load. You really need to patent this word, Cavey. You'd make a fortune on just how much I use it when talking to newbies with their first micro-blips :D ) are a little more common and of no consequence. (especially blips of less than 200 as that amount is used to determine "viral suppression" in studies) Always remember: lab results are only a snapshot of one moment in time. Knowing that we all still have small reservoirs of virus, we should never be surprised to see these small micro blips every once in a full blue moon.
leatherman (aka mIkIE)

There's no rain, there's no storm, though the blue sky makes you wonder
Don't you fear what will come will come
And right now we're in the sun
Sure enough, seasons change
But don't let today get lost 'cause today the sun's on us
Today the sun's on us
- Sophie Ellis-Bextor

chart from 1992-2017
Isentress/Prezcobix

 


Terms of Membership for these forums
 

© 2018 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.