Low T-Cell - Bone Marrow Biopsy

Hi Maria, I’m glad the information was useful. I couldn’t believe how similar those conversations where to what you’re experiencing!
I haven’t heard of any negative side effects from the HPV vaccination. There were very few minor reactions listed on the manufacture sites. It appears to be a pretty safe vaccine. I recently had all of my childhood, adolescent vaccines which included the HPV and didn’t have any issues. But it’s worth checking into if you feel the timing of your shot is coincidental to your recent symptoms.

Here’s a link to the Vaccine Adverse Event Reporting System where you can research your particular vaccine to see if there is any relationship with it and POTS.
https://vaers.hhs.gov/index.html

I have a feeling you’d feel a lot more comfortable staying with your parents a while long until this gets sorted out, right? Is it possible to see a doctor for further treament in Canada now that you’re there?

Hi @loribmt, I listen to a podcast also call POTS-cast 😀 - which one of the episode saying Gardasil can create POTS as it might activate mass cell syndrome (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8779641/). Its now scaring me to death to continue with the vaccine. Im not sure how to move forward.

I am only insured for emergency here so I can’t go to a general doctor, I will have to wait until I’m back to see my immunologist and infectiologist. I will probably have to wait 3-4 weeks to have my diagnosis from the heart monitoring with some medication. I’m supposed to go back home on the 15th so I’ll get my diagnosis remotely. From there, Im still waiting for my genetics results, and to see a well-known immunologist. Maybe I should get an appointment with a POTS doctor in the meantime.
I also want to try cutting dairy, gluten and sugary (that would be thought for a foodie like me 😂)

Regarding staying here, I find it really hard to enjoy myself (probably will be the same back home). I am constantly reading stuff and feeling dizzy or scared to eat and then feel even worst or to go out and have an episode. I really need to try having a minimum of fun maybe, but I’m so sad to be feeling like that and not being myself anymore - I don’t recognize who I am and I feel hopeless.

Thanks again for being there, your message always makes me feel incredibly good and reassured <3

This new finding of yours has certainly piqued my interest. I’ve been doing some research too, as I know you have.
The good news that I found out is, while POTS is life changing, it is not a fatal condition. So if there’s any consolation to ease your mind, for me, that took the stress level down a notch.
The podcast sounded informative for you. I’ve also found these two articles that I felt were filled with more details on the types of testing, what happens, how to mitigate the symptoms with possible treatments.

https://www.hopkinsmedicine.org/health/conditions-and-diseases/postural-orthostatic-tachycardia-syndrome-pots
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https://myheart.net/pots-syndrome/

The link with the Gardisil vaccination was a good catch on your part. This will be something to discuss with your immunologist back home. A cardiologist should also be on your team. If you have a patient portal with your immunologist, it might be good for you to send her a message informing her about what’s going on while you’re on vacation so that she’s aware. In the meantime she can do some research and/or contact a cardiologist to get some collaborative opinions on where to go next with your treatments!
Sometimes with vaccinations, if there is a triggered response, they will abate within a few weeks. So hopefully that will be the case with your POTS. But definitely inform your doctor. And at this time, delay having the second vaccination until you discuss this with your doctor.

I read about the possibility of diet changes helping too. HAHA good luck with that! Those would be my favorite things too and pretty tough to give up!! I’ve been having some mouth sores as a side reaction to a medical conditions I have. The past month, I’ve had to give up chocolate, salty, crispy and spicy foods, minty toothpaste, etc. I’m not a happy camper!! 😂. I fell off the wagon today though…I found I can give up a lot of things but chocolate isn’t one of them! 😂

I can understand wanting to get back home and to work. Do you feel comfortable flying solo? That’s a long flight. Any way you can have a parent or a sibling fly back with you?

Thanks a lot @loribmt for all your research, I have emailed both doctors but they are not super responsive by email…Since Im outpatient it’s usually impossible to get an appointment at the same hospital but I need to go to external clinic for other specialist - this is one of the main issues where I had to go to seek all specialist external. They were talking once to admit me for a week and do all the test in-patient at the same time but since I’m not « dying » they are pushing it. This is very frustrating that they are not responsive - I guess they have a lot of work and maybe don’t take me so seriously. Lets hope that when I’m back I meet them in person and they really listen to me. At least there is two weeks left so maybe they take that time to look it up.

Im so sorry for all your dietary change. Chocolate is indeed a hard one 😂 - is milk the problem? For me its cheese, milk in my coffee and gluten. That will be incredibly hard, but probably I should really try it.

I do not think anyone can fly home with me, but I think I should be able to manage it if that’s « not dangerous » apparently. Deep inside still having a feet that the high D-Dimmer is really a blot cloot issue, but again they ruled it out so I should stop.

Hey Maria, sorry I’m late in replying. I was offline most of the day. Just catching up.
I hope you’re a little relieved that this isn’t a fatal situation but it sure is negatively impacting your life. I can understand your concern about the possibility of a blood clot, especially when flying.
Do you have any allergy to aspirin or any reason why you can’t take it? Has a doctor ever told you not use aspirin?
If you’re able to use aspirin, you might want to consider taking an 81 mg baby aspirin once per day starting 5 days before you travel. They’re chewable and they should be taken with food. It works as a blood thinner/anti-coagulant. But again, you should check with your doctor to see if this is product safe for you.
When do you return home?

No worries! Im glad you enjoyed the day wherever you are 🙂 I never heard that I shouldn’t take an aspirin - I unfortunately don’t have a way to reach out to doctors, I don’t have a family one and my immunologist is answering (a few weeks later if answering at all) 🙁 I guess I should try to believe the scan but it’s very hard to trust that the D-Dimmer are high and I don’t have a blood clot. In any case my flight is on the 15th. I was out again today for an hour (tried to see a friend for an ice cream) but I was so dizzy it was really hard to feel fully there, but I’m glad I went even tho I am feeling so anxious to do anything and it ruins my vacactions.

Had the most frightening experience ever where I woke up 3-4 times feeling like Im fainting and my heart is stopping. It’s terrifying and can’t sleep. I’m really concern 🥺

Maria, I’m so sorry to hear you had such a horrible night! That had to be really scary. Since you’re at home right now, do either of your parents have a blood pressure cuff? You could check your BP during those events to see if your pressure has dropped during that time.

This entire situation you’re going through is way out of my level of experience. But years ago I did have heart palpitations and a doctor gave me a way to reset my rhythm. I looked through some articles this morning and found this one which gives pretty simple and clear ides for how to calm the palpitations. It’s not from a medical source and it’s not a permanent fix. But it helps to regulate beats when you’re having an episode.

From my understanding POTS is positional and generally happens when a person is standing. So it’s curious that you felt the same feelings when you were lying down. Honestly Maria, if this happens again, it might warrant another trip back to the ER. I know you’re visiting and in a foreign country where your insurance doesn’t cover anything but emergency. But if your heart is at risk that IS an emergency.

How are you feeling right now? Did the symptoms pass?

Hi @loribmt,

I wanted to give you an update and thanks for always supporting me - Its really really great. I went back to the ER again yesterday.

I saw the urgentologue - she did again an EKG, ultrasound, and blood test. The D-Dimmer had decreased to 100 instead of 6500 and everything was alright, thyroid, mononucleosis, etc except obviously the Lymphocytes were very low.

She prescribed an external test - A stress echocardiography in the next two weeks. She said that I should try to take an Ativan to relax wherever I need it and that it can be a mix of anxiety. She thinks I might have some sort of tachycardia but that for that we need 1) the results of the 7 days cardiostat 2) the stress echocardiography. Once I do the cardiostat (max 14 days) I will know the result right away, vs the cardiostart in 3-4 weeks max.

I am still a bit concern - could I have a heart blockage or serious issue? The doctor is pretty convinced that I don't but I still do feel very dizzy. My dad did have a heart attack because a small artery was not seen on the ultrasound (they just show the main ones).

Anyway, I am very glad and trying to relax now and not think too much of the above 😛

@loribmt I hope you’re alright! I do not mind the no answers but just unusual so wondering if ur alright 🙂