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Author Topic: 5 months since diagnosis...  (Read 1796 times)

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Offline Allthefeelings

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5 months since diagnosis...
« on: September 29, 2022, 02:20:56 pm »
So I was diagnosed in late April. My initial numbers were CD4 22/3% and VL98,000. Today I just found out my CD4 is 134/13% and my last VL is 60. Most of my other blood is looking good accept something called Reticulocyte seems to be extremely high. It's still really hard not to get discouraged when I get back labs. I'm doing everything right, I think. I don't drink. I take my meds. I eat cleaner. I'm exercising. I take my vitamins. I'm starting to lose hope for my future, and I very much so want my future.

Sorry to dump this here but I literally do not know where to dump this.

Online Jim Allen

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Re: 5 months since diagnosis...
« Reply #1 on: September 29, 2022, 03:17:07 pm »
Hiya,

The VL is suppressed, and CD4s are stable, whilst your other labs are stable, and you are not even a year into treatment.

Congrats, you have achieved in 5 months what took me over a decade to mess up or fix afterwards, depending on how you look at it.

Quote
I'm doing everything right, I think. I don't drink. I take my meds. I eat cleaner. I'm exercising. I take my vitamins.

Okay, you are way ahead and ill let you know when I reach this stage.

What HIV treatment are you taking?

Quote
Reticulocyte seems to be extremely high

Hmm... What do you consider high RBCs, and what did your doctor say?

Quote
I'm starting to lose hope for my future, and I very much so want my future.

Why? What are you scared about, what fears, and why do you think there is no hope? I don't mean to be blunt, I want to support you, but let's talk about it.
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Offline leatherman

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Re: 5 months since diagnosis...
« Reply #2 on: September 29, 2022, 08:24:13 pm »
I totally agree with Jim. In a few months the meds have knocked down the viral load to almost undetectable. For scientific research, a vl <=200 is considered "successful" for controlling/suppressing HIV. So at a VL of 60, you're doing really well, especially since keeping HIV controlled is what will allow your immune system to recover.

As far as your cd4, your count was really really low. While a few people may recover their CD4s quickly after HIV is suppressed, for most people who had a really low count it takes more time for their cd4s to recover above 200. If you had been diagnosed with 250+ cd4s, well they probably would have recovered faster; but your count was very low, so its' probably going to take a year or more to recover above 300.

Keep in mind that HIV treatment isn't like penicillin for an infection. Taking Penicillin for a week, often knocks out the infection and helps you completely recover. HIV meds stop HIV from replicating and destroying your immune system. Taking daily meds keeps stopping HIV from replicating and allows your immune system to slowly recover to whatever level you have based on the genetics you inherited from your parents. HIV treatment isn't a quick cure; but a long term strategy to block HIV and allow your body to be as healthy as it can be.

Instead of losing hope, you should be acknowledging how bad your situation was .... and how much it's already improved in less than a year. ;) Hang in there and don't give up hope. Trust me (someone who has lived with HIV for nearly 40 yrs), two years from now, all these worries you are having will be distant fears you don't  think about or hardly even remember. ;)
leatherman (aka mIkIE)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Tonny2

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Re: 5 months since diagnosis...
« Reply #3 on: September 29, 2022, 10:09:30 pm »





           ojo.            @allthefeelings…welcome to the forum…I’m sorry you are feeling hopeless, please read my thread, “hope dies last”…have you seen your doctor about the “high” results?, tho, not always having a high result is bad…I’m not a doctor but if I remember well, I was in the same situation a long time ago, jyst 20 cd. When I started treatment, HAART, high RBCs, the doctor expkanation was that my red bliid cell were developing immature to become regular bliid cells, either you had anemia when diagnosed or your immune ne system pretty bad. Doctor said that it was good that my RBCs were high because it meant that my bone marrow was starting to work normally again. What did your doctor said to you?.


Congratulations, your miracle treatment it’s doing its job, kicking hiv ass…I know how you are feeling, hopeless and tired, I felt that way 28 years ago when there was no HAART, the difference now is that there is not mire AIDS, due to precisely HAART, your VL IS DOWN TO 60 years n just five months and n treatment, is envy you, it took me that get an UD level 12 years and my cd4 were 56 when I was told by my doctor that there was no mire treatment for me due to a history of resistance, after I started a “salvage treatment, my cd4 jumoed to 361, it was when I became UD since my AIDS dx in November 1994…HOPE DIES LAST, trust me, this f$&@ virus, its complicacions, almist kill me three times, twice due to PCP and once hemolytic anemua, same problem with RBCs luke yours…well, wishing you the best, we lease keep us posted, you are nit alone, we are here for you.


There is still AIDS, some parts of the world don’t have access to HAARTs, in the rich countries aids gas becomes an acute hiv infection, you are almost above 200 cd4 levels and 14% level, consider a ver an aids illness. We are so lucky. Let’s think in thise whom don’t have HAARTs and are still dying from aids opportunistic people nfections

Offline Allthefeelings

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Re: 5 months since diagnosis...
« Reply #4 on: September 30, 2022, 02:00:34 am »
Hi Jim,

So I’m taking Biktarvy. The RBC’s were all in the high end of the range. He made me go for more blood today. Got that back and Haptoglobin looks super low <8. Waiting to hear back on his interpretations on that.

Offline Tonny2

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Re: 5 months since diagnosis...
« Reply #5 on: September 30, 2022, 07:17:40 am »




         ojo.            Hi again!… what does the doctor tell you about your situation?, remember that we are not doctors,
We just share our experiences. Please keep us posted. Good luck...hugs

Offline Allthefeelings

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Re: 5 months since diagnosis...
« Reply #6 on: September 30, 2022, 08:35:42 am »



Hmm... What do you consider high RBCs, and what did your doctor say?

Why? What are you scared about, what fears, and why do you think there is no hope? I don't mean to be blunt, I want to support you, but let's talk about it.

So circling back to these questions.

My RBC ‘s are over 150,000.

I’m just scared of getting sicker. I’m an overthinker by nature. I don’t mind blunt at all. Like others have said I obviously realize I’m doing well in context of where I started. I’m usually hopeful. But seeing I change on cd4 always makes me anxious. I know that will eventually subside. I’m definitely in a better head space than I was yesterday.

Offline leatherman

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Re: 5 months since diagnosis...
« Reply #7 on: September 30, 2022, 09:10:54 am »
I’m just scared of getting sicker.
well, when you consider you first numbers (CD4 22/3% and VL98,000), you WERE actually quite sick/unhealthy - even if you didn't realize it. Were you having issues when you were diagnosed? Some people can have very low numbers and not be sick (well, sick with issues). Without a good working immune system our bodies don't fight diseases and often there may not be symptoms until almost too late.

I say "almost too late" because one incredible thing about HIV meds is that many people who have been on death's doorstep amazingly recover after starting meds. It's known as the Lazarus effect (seemingly coming back from the dead). Twice in the 90s I was hospitalized (with pneumonia, cd4s at 5, and VL in the millions) and told I might not survive until the next day (once on my 36th birthday and then again on my 38th birthday); but since I'm here today I'm proof that getting HIV meds into you can bring your health back from some dire situations.

Of course while HIV meds will work wonders for suppressing HIV, there's not much you can do to improve the situation of regaining your health. You just have to wait while your immune system recovers/rebuilds. Sometimes as people's VL is reduced and they regain cd4s, their bodies start to fight infections/diseases they didn't know they had (because their immune system was so gone, it wasn't doing anything) and that can lead to feeling "worse" while you're actually getting better. That's called "immune reconstitution inflammatory syndrome" (IRIS). It may seem counterintuitive but when you start taking HIV meds and your VL goes below 200, you still might have some health issues to deal with while your CD4s recover, start to multiply, and get back to their job of fighting off disease.

Of course, you shouldn't expect to have IRIS issues, just like you shouldn't expect negative side effects from medication. It's just something to keep in mind that might happen and that it actually means you're getting better. Also keep in mind, since your initial numbers were so bad, that recovering is not always a straight line improvement. Sometimes your VL and CD4 numbers will bounce up or down, so the best way to ALWAYS watch your HIV condition is by the change over at least 3 tests over at least 6 months. So far you have two results and if you graph that out, it's an amazing improvement. But if the next test results aren't even better, don't fret until the test after that to see how things are going.
leatherman (aka mIkIE)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Tonny2

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Re: 5 months since diagnosis...
« Reply #8 on: September 30, 2022, 03:36:30 pm »





           ojo.            @allthefeelings, hi again!, may I ask you why you went and got tested for hiv, were you sick?…usually people with numbers like yours have already gotten an OI, that was my case, as a matter of fact, I ended up in the ER because I couldn’t breathe, I was in the ICU, dx=AIDS, cd4 20, i had lost 30 pounds and still didn’t get check by a doctor until I was dying of PCP. Can you tell us about your story?.

We all know how you are feeling, we went through the same when we got the dx, you are going to be ok…I’ve asked you what your doctor says about your high level of RBC?

Again, good luck, just take your med as prescribed and try to relax…hugs

Offline Allthefeelings

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Re: 5 months since diagnosis...
« Reply #9 on: October 05, 2022, 05:06:50 pm »
Hey y’all. Feeling better since my post. Thanks for all the support. My VL is 22. I can never seem to get below 20. I’m feeling mostly ok. Just trying to focus on joy and living life and doing well

Online Jim Allen

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Re: 5 months since diagnosis...
« Reply #10 on: October 05, 2022, 05:15:41 pm »
Glad to hear the VL keeps being fully suppressed and you are feeling okay and better.

Keep taking your meds and live your life.  :)
HIV 101 - Everything you need to know
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Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
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Offline Tonny2

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Re: 5 months since diagnosis...
« Reply #11 on: October 05, 2022, 05:52:04 pm »
Hey y’all. Feeling better since my post. Thanks for all the support. My VL is 22. I can never seem to get below 20. I’m feeling mostly ok. Just trying to focus on joy and living life and doing well




           ojo.          Hey there!!…it makes me happy that read that you are learning to live with hiv, in other words, you are letting your med take control of the virus, while you take back, control of your life. Now, all you need the do is, be disciplined on taking your “vitamin” and keep a positive, namaste pun in ntended, and keep a good attitude…keep us posted and good luck

Offline leatherman

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Re: 5 months since diagnosis...
« Reply #12 on: October 05, 2022, 08:22:16 pm »
My VL is 22. I can never seem to get below 20
some people can never get their VL to undetectable. It's unusual but it happens. And there should be no shame in that. As long as your VL is <200 and you're taking HIV meds daily, that's all you can do.

Sometimes your VL and CD4 numbers will bounce up or down, so the best way to ALWAYS watch your HIV condition is by the change over at least 3 tests over at least 6 months. So far you have two results and if you graph that out, it's an amazing improvement. But if the next test results aren't even better, don't fret until the test after that to see how things are going.
So let's look at your numbers based on what I posted earlier:

CD4 22/3% and VL98,000
CD4 134/13% VL is 60
CD4??? VL is 22

That's at least 3 test results over at least 6 months. 98000 to 60 to 22. Obviously there's nothing wrong with your treatment and it's clearly successful as your VL is <200 and seems headed toward undetectable and your CD4s are heading upwards towards >200.

If you stick to the meds daily and aren't undetectable by next April (the end of your first year of treatment) then talk to your doctor about his thoughts about the meds you are currently taking. Although if I were you I wouldn't be worried about that at all. At the rate your VL is lowering and your CD4s are recovering, you'll probably be VL UD and cd4>200 by the end of this year and months before the anniversary of you first year of HIV meds.  ;) :D
leatherman (aka mIkIE)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

 


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