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Low T-Cell - Bone Marrow Biopsy

Blood Cancers & Disorders | Last Active: Nov 15, 2022 | Replies (162)

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@mariabrat

Hi Lori,

Haha, we are so connected! Thanks for taking the time, and so nice that your daughter was home with you 🙂 I feel very lucky to be home as well but really wish I could just enjoy nature and be calm - which I am really not right now. Your daughter is lucky to be spoiled 😉 There is no age for that! I had miss my parents so much!

I actually did buy an apple watch two days ago and started to monitor my EKG and heartbeat which looks good except for my heart rate variability which seems poor. I did do a holter in the past a few years ago and do often EKG but it's always fine. Once 10 years ago I went to ER as well for weird heart feelings and had a thyroid issue but it went away. That still was not comparable to what I feel now.

I still do not feel well, I feel extremely dizzy and it feels like my heart is going to stop and that I will faint (some sort of malaise). This dizziness feeling is quite panicky and really makes me wonder what it is if that comes from the heart or not. Can my mysterious disease be autoimmune and create something from the heart? Can the head MRI have missed something?
I am supposed to go camping tomorrow and to be fair I am super scared as I do not feel good and debating going to ER today.

My infectiologist gave me a box of antibiotics to try if I feel bad, to see if that improve (as a test) - I am tempted to take it? But at the same time I am worried it might get worst.

On your side, I am very happy you are doing well - it was about time for you to enjoy a bit more of a peaceful life as well as the summer (and thanks its way colder here than in Germany) 🙂

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Replies to "Hi Lori, Haha, we are so connected! Thanks for taking the time, and so nice that..."

Hi Maria, Y’know, I’m sitting here reading through this latest post and I can feel your anxiety across the ocean.
Anxiety can cause myriad issues with our health; our hearts, guts, brain. It’s all connected. Autoimmune diseases take on a life of their own and by doing so, can cause our anxiety levels to soar through the roof because we can’t pinpoint what’s going on. I can’t help but think you’re having some of each from that random smorgasbord of symptoms you’re experiencing over the past few years. That would cause anyone anxiety.
With the Apple monitor, you’re not seeing anything wrong with the EKG or heart beat. That’s a very good sign. Our heart rates can fluctuate greatly throughout the day. Any movement or change in breathing, any activity can cause them to speed up and slow down. So it would be more beneficial to note the EKG numbers. If you’re not seeing any erratic issues there, that’s positive. But also, please don’t become fixated on those numbers and continually checking them because it’s easy to become too preoccupied with looking for something wrong when there might not be anything amiss at all. Do you see my point?

With your past history with EBV and Covid, both viruses can cause unexplained symptoms in every part of the body.
I’m going to give you some links to our long Covid conversations so you can see if any of these run parallel to you. This one in particular with a member who also had EBV and Covid with chronic issues might be of interest for you.

Epstein Barr Treatment for Long Covid. https://connect.mayoclinic.org/discussion/epstein-barr-treatment-for-long-covid/
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A discussion on Post Covid heart related issues. https://connect.mayoclinic.org/discussion/post-covid-heart-issues/
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Post Covid Recovery: https://connect.mayoclinic.org/group/post-covid-recovery-covid-19/
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Here are a few conversations from our EB postings just to let you know that there are other people experiencing similar unexplained issues. Sometimes knowing you’re not alone in these events can lessen the anxiety a little bit.

This link is one that our Connect Director posted a few years ago with all the links regarding EBV. Some WON’T apply to you so don’t read too much into some of the discussions. https://connect.mayoclinic.org/comment/135342/. (It’s the 6th reply down on that page)
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This is an offsite article with some natural healing ideas. Avoid the ads! https://aboundinginhopewithlyme.com/what-you-should-know-about-chronic-reactivated-epstein-barr-virus/

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Everything that’s been checked out with your vascular system has shown to be in great shape. You’re young so those 2 factors are in your favor. It doesn’t mean there’s nothing wrong, but, the odds are that it’s nothing significant or you would have had a telling event by now.

Unless you’re really feeling awful, if this were me, I’d be inclined to go on the camping trip tomorrow. In this type of situation, I’m a ‘rip the bandaid off person’ and I’d go on the trip. My reasoning is what’s the worst that happens? Nothing has happened in all the months I’ve worried and I’m tired of wasting my life, so I’d just go.
You’ve felt this way for months, each day expecting the worst and it hasn’t happened. So it would be worth the trip with family or friends to spend a night out in nature. It has healing powers while you’re away from the norm.

Maybe hold off on the antibiotics until after the camping trip instead of tossing something new into the mix.
I just have to ask this: When you’re out with friends or doing something you enjoy are you still experiencing the heart related feeling?