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Low T-Cell - Bone Marrow Biopsy
Blood Cancers & Disorders | Last Active: Nov 15, 2022 | Replies (162)Comment receiving replies
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
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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?