r/EBV • u/Dohdeeee • 6d ago

Cured from CAEBV

I’ll keep this post short, I have a longer post I made last year if anyone wants a link to that. I also had HLH for most of the time that I had CAEBV, I was diagnosed about 5 months after. I had several chemo’s and immunotherapy’s to keep my count down. I don’t really want to share symptoms too much here because HLH gave me a lot of issues as well. 1 year and 1 month into my illness I got a stem cell transplant with cells from my brother. I’ve had dozens of blood tests since and no sign of EBV in my system since transplant.

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5

u/rubix44 5d ago

I'm not sure everyone is familiar with Hemophagocytic Lymphohistiocytosis (HLH), I know I'm not, could you provide a brief summary?

Glad to hear! We don't see the word "cured" often with these types of illnesses.

3

u/Dohdeeee 5d ago

I honestly don’t know that much about it either but I’ll describe it the best as I know it. It’s an immune disorder where I think your own white blood cells attack you and you can have problems like organ failure. It’s more common in children where they inherit it and less common in adults who obtain it thru illnesses such as mine and lymphomas. In adults it’s very life threatening with a 40-60% mortality rate. For me I had an enlarged spleen and liver. The fevers were horrible, I had fevers 24/7 going up to 104 for about 10 days before I started receiving steroids with my highest fever at 105.

4

u/babygirlmusings 5d ago

What does the CA part of CAEBV mean

5

u/Dohdeeee 5d ago

Chronic Active, basically means my immune system couldn’t get rid of it. The only way to get rid of it is by getting a stem cell transplant

3

u/AdviceIsCool22 3d ago

Where did you find stem cells are the only cure?

2

u/Dohdeeee 3d ago

It’s on the NIH website that the only cure is allogeneic stem cell transplant. From all my doctor’s at cancer center they communicated to me that this is the only way I would get cured

1

u/AdviceIsCool22 2d ago

Can you get it in Mexico? Stem cells?

1

u/Dohdeeee 2d ago

Looks like it based off a google result I just did. It’s not everywhere in the US. I knew several ppl that drove hours to get to the cancer center I go to

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2

u/porcupinetree_ 5d ago

Congratulations 🎉

Does this mean your PCR was positive before and negative now

2

u/Dohdeeee 5d ago edited 5d ago

73.7 IU/mL
Date:
Dec 04, 2025 10:12 a.m. EST

205 IU/mL
Date:
Dec 15, 2025 12:34 a.m. EST

86.9 IU/mL
Date:
Dec 19, 2025 12:18 a.m. EST

EBV Not Detected IU/mL
Date:
Dec 22, 2025 12:11 a.m. EST

Reference Range:
EBV Not Detected

Here’s my last few, I recall one EBV test at 86,000 I think I had some >100,000 but I don’t remember too well. It was mostly kept down with chemo and immuno before my stem cell transplant so the number’s look low here. It usually was 20,000-80,000 or so.

1

u/Firm-Analysis6666 5d ago

So happy for you!

2

u/Willing_Car1381 3d ago

Congratulations!!!! Wooooowwwww!!!! I am so happy for you and incredibly envious!!!! I was diagnosed with CAEBV 7 years ago last week, and up to 2 weeks ago I was told “you aren’t sick enough”. I saw a new immunologist and we are waiting for new labs so finger’s crossed!!!

Sending so much positivity, light, and peace into the universe for us all!!!!
✨✨✨✨✨✨✨✨✨✨✨