Low T-Cell - Bone Marrow Biopsy

Hi Lori,

thank you so much for messaging! How are you? How is the summer on your end?

Well, I have been feeling quite bad. The antibiotics don't seem to be working. I am super dizzy and apparently, it does not come from my ear (I went to the HNO). Also, my glands under the throat, tongue, and stomach hurt, I am really thinking there is something like Lymphoma that they might have missed on a scan? I also stopped eating Gluten - initially looked like it got better but it came back.

Next week I am going again to see the infectiologist and will potentially try another type of antibiotics and she wants to do an EKG of the heart (no idea why, maybe because ASO titer is elevated)? then try corticoid and antiviral....

I am now in London this weekend with friends, but just feel constantly worried with this dizziness that I will faint or feel too bad. I am thinking this dizziness must be something serious like a brain issue that has not been found? I don't understand 🙁

xx

Oh golly, Maria. I sure hope you find some relief from this. Please try not to keep thinking worst case scenarios. I know it’s hard not to do so but negative thoughts add stress and sap energy.
It’s encouraging your doctor will keep pursuing this for you with continued tests and trying different meds. Unfortunately medicine isn’t an exact science or it would be easy to treat every unusual case. Your doctor is trying to unravel the mystery…and you’ve ‘written’ a good one!

I’m glad you’re having fun with friends this weekend. Even if you’re only going through the motions. I know there’s that underlying concern all the time. But it’s good to be out with people you enjoy and keeping some normalcy for your life.
Keep me posted, Maria. Hugs!

Hi @loribmt,

How have you been? You have been on my mind these days - I was thinking that I should write you an update and ask for your wisdom.

I am currently back at my parent's place for a month's holiday - My infectiology doctor back in Europe decided to stop the antibiotics (which I was taking for 2 months) for that month since it did not seem to change much. Last week I started to have a very strange feeling in the heart, some sort of pressure, with some moment of sharper pain. I also was waking up during the night or even can't fall asleep as I have a very strange skipping beat feeling like my heart is going to stop. I thought it would go away, but 4 days after it was still there, and worst, I wasn't able to do my normal activities and started to panic. I went to the emergency cardiologist, they did a EKG, Chest Xray, Blood test for troponine and heart ultrasound, and all good. My dad's familly died at 40 from a heart attack (they were smoker) and himself had one a few months ago, without any worrying EKG or ultrasound. He had one calcified artery which was not seen as it does not release cholesterol. I am very much worried and debating if I should go to the ER again to ask for more test? Maybe CT Scan? It does not seem like they want to do that... I also had a HPV vaccine two weeks ago but it would not really make sense that this caused that. Could it be autoimmune? Could it be a sign of soon to be heart attack? I am very much clueless on what to do and my parents do not believe me and think I am just scared of also doing a heart attack like him, but my symptoms are very real.

I know this is outside of the "cancer" topic but if ever someone (including you) has tips or advice here I would very much appreciate it.

How are you enjoying the summer otherwise? How are you keeping up with the forum?

So grateful for your support xx

Hi @mariabrat, we must be on the same wavelength. ☺️ I’ve been thinking about you and felt it was time to check in to see how you’re doing and here you are!
Ok, first, I’m relieved to see you’re home with family for a month, though I wish it was more restful for you and you weren’t plagued with negative thoughts. We had our daughter home with us for a few days…always fun to spoil her. At 39, she’s still our little girl. LOL I’m sure your parents are happy to have you with them for a nice long visit.
With the family history of early heart attacks I can understand how that shapes your thoughts when you start feeling skipped heart beats and other symptoms you haven’t experienced before.
Since all of the test results for possible heart disease were clear for you and you’re still having these palpitations or skipped beats, one thing I might suggest is speaking to your doctor about a Holter Monitor. This is a little wearable device that tracks your heart’s rhythm over a period of days and is read by your clinic for results. Here’s a link to a description: https://www.mayoclinic.org/tests-procedures/holter-monitor/about/pac-20385039

Another option that’s available is an APP for your smartphone like Cardiogram for Apple. There are number of them on the market in the US. So you can check the availability in your country for your phone. A friend of mine with Afib has a phone app and can keep track of her heart rhythm beyond what we get with our exercise apps.

Knowing that there isn’t any longterm issue with your heart will be a relief for you. Sometimes coronary issues can be genetic, but it sounds as though your dad’s side of the family made some poor health choices that may have attributed to their early heart attacks. It was the right thing for you to have your heart checked out. But I think you can relax a bit about any heart related issues.
I can’t help but wonder if some your heart symptoms aren’t anxiety related. I guess I sound like your mom now, sorry. ☺️ You’ve been under so much stress the past couple of years with your undetermined illness. There’s a lot of worry over trying to find answers, a diagnosis, and a treatment so you can start feeling whole again. That can take a huge toll on the body. About 40 years ago, I’d gone through similar skipped beats and anxiety attacks because of some very stressful situations I was dealing with at the time. Took some convincing from my doctor that nothing was wrong with my heart. (I wore a Holter monitor) But once I realized that it was stress, and not actually heart related, those symptoms went away.
Are you still practicing your mindfulness exercises to reduce anxiety?

I’m sorry to hear the antibiotics made no change in your health. But it was a good place to start. I think your doctor wanted to rule out any underlying infection. Autoimmune diseases can be a huge mystery to unravel. So your doctor started with the easiest thing to try and will be able to refocus to other possibilities going forward. Some of your symptoms sound very much like Long Covid. Though I know you had your illness before you had Covid. But you had Epstein Barr and that is also a virus which can leave the same longterm after effects as Covid with autoimmune symptoms. I hope you and your doctor back home continue to work on this together, Maria. You need some good news!

Life is good right now on this side of the computer. Summer is winding down, days getting shorter. The oppressive heat seems to have passed, so that’s a relief. I lose my cherub-like demeanor when it’s so hot and humid. 😀
Keep me posted, Miss Maria. Say hi to your mum and dad for me! Hugs!

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) 🙂

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?

Thanks a lot! Yeah I know many of us feel some weird feeling due to vaccine, virus and so on. Its so frustrating. I am actually not an anxious person but when I start feeling dizzy (it can happen during wonderful and relax moment) and that ruins everything. My heart issue is pretty constant and I try so hard to not think about it but deep inside I know I am a mess healthwise. Some days I’m thinking I won’t wake up.

My heart feeling is going to the shoulder area (near the clavicule) and sometimes the hard. It feels so tight and strange. Also the dizziness is quite worrying and worst during some part of the day.

I will go through the links xx

Hi @loribmt

I hope you’re having a nice weekend! I just wanted to give you some update. I went for dinner with my family and right after I started feeling a malaise and my heart was racing at 130. I went to the Emergency and felt absolutely horrible. I tested positive for D-Dimmer at 6500 which is very high so they were convinced I had a pulmonary embolism. I went to an emergency scan with contrast. They kept me in a room to observe me as my heart rate was too high. The scan came back negative which they were very surprised. They said they think I have POTS, and that they don’t know why D-Dimmer is high. After reading on the internet I found out that D-Dimmer can increase if important disease is present in the body and POTS can be cause by an infection, trauma etc. I am very confused with the D-Dimmer wasn’t high a week ago when I went to ER the first time. I am also confused why the symptoms of POTS would have started 2 weeks ago? Could it be the vaccine? Is it my autoimmune/disease? I am very discouraged, I feel like my heart will stop during night, and I walk two steps and my heart is on the roof. Im feeling very anxious because this create very strange feeling and dizziness. Im very struggling to go out of my house without panicking and thinking I’m going to die. I have a machine for a week that measure my heart beats, but that might take 3-4 weeks to get the results. I don’t know if you’ve ever heard about this but that’s very mysterious, Im again thinking they must have miss something or if my underlying disease will make my heart stop. I’ve been feeling like my heart can’t handle my sickness anymore as I feel absolutely exhausted.

If you have ever heard this, or if anyone had this condition, I am keen to hear some advice

Hugs from Canada xx

Maria!! Oh my gosh, sweetheart, I’m so sorry to hear about your horrid experiences with these episodes! But wow, huh? This is really revealing about your possibility of having POTS, Postural orthostatic tachycardia syndrome). You know your body better than anyone else and this is what you’ve been saying all along!

I know nothing of this condition but I found several discussions in our Connect forum which relates to POTS. Read this one! I’ve posted the link below so you can follow along with @azurite who wrote in Aug 20, 2020. This could have been you writing! It parallels your symptoms!

“ I'm 27 years old, and 2 months ago (coincident with just before I had an upper endoscopy), I started experiencing symptoms of lightheadedness, dizziness, heart racing and pounding out of my chest, blurry vision, etc. I had a til table test done earlier this month that was positive for probable POTS. However, coincident with these symptoms, I also began experiencing what I would call non-anxiety "panic attacks." At times when I wake up in the middle of the night, my heart will start racing and a sense of panic floods my body. My veins feel as if they go white cold with electric charge, and I feel 'trapped' inside my body, oftentimes shaking. My brain will also often feel like it's being pulled into another dimension. It's a horrific sensation that can take 20 min to pass (I typically have to take a Xanax to get through it). There were also days when as soon as I would wake up in the morning I would instantly be filled with a sensation of panic with a racing heart. My body feels like it's constantly on the edge of fight-or-flight, but it feels entirely physiological rather than psychological (I've been meeting with a psychologist for months and had been doing really well with my anxiety, I never experienced panic attacks before). Has anyone else with POTS experienced these issues? I'm getting better dealing with my issues of lightheadedness during the days, but now I'm terrified to go to sleep at night.”
Here’s the link to all of the conversations from their posting. None Stop Panic attacks with POTS
https://connect.mayoclinic.org/discussion/non-anxiety-panic-attacks-with-pots/
https://connect.mayoclinic.org/discussion/pots-patients-vaccine-or-no-vaccine/?pg=1#comment-624457
POTS
https://connect.mayoclinic.org/discussion/pots/
21 Things People Don't Realize You're Doing Because You Have POTS: https://themighty.com/topic/postural-orthostatic-tachycardia-syndrome/things-people-do-because-pots

I hope now that there’s been this huge discovery, that there is credibility to what you’ve been saying all along to your doctors. I also put a link in regarding the Covid vaccine and the possibly of POTS, just because you mentioned it.

Please let me know what you find out! I’m so relieved your with your parents right now! Sending a huge hug and a little sigh of relief that you might finally have a diagnosis!

Thanks a lot for sharing! Its a bit discouraging as it just adds up to the autoimmune condition. If I look back in time I had 2-3 épisode in the last year were I had this sort of panic attack - probably due to POTS and maybe got worst with my HPV vaccine 3 weeks ago. I am really wondering now if I should continue this HPV vaccine??? I just want to find a way to get better, and Im feeling helpless if I should go back home to see some doctor again or stick to my parents place for a few weeks more and then go to my immunologist. I hope they can give me medecine for POTS and can find out what do I have because I can’t live like that 🙁