Bella has been in bed 100% the past few days. She’s had chest pain like you wouldn’t believe, and tonight it got to be way too much. We had to call for an ambulance. The closest hospital isn’t her normal hospital, and their records are incomplete, but she always brings her doctors notes with her just in case.
Her heart rate in the 170s-190s at rest, chest pressure and pain radiating from her heart to her back, whole body aches, and hard to breathe, even a pain in her arm that would be concerning enough for anyone else to go into the ER, she finally gave in and had to go to the ER.
Standard stuff, EKG, blood labs, and the like. It’s hard to get treatment when you’re chronically ill, and most of the time they just blame that and move on. This time is no different, but the doctor sees the note from Bella’s PCM, and stares in disbelief. We even overheard him saying that he wanted to contact her doctor because he thinks she wrote it herself… Her PCM confirmed he wrote it, but still… How do you get even basic treatment when the doctor doesn’t believe what’s right in front of him? Why is that ok?
Her labs came back decent enough, so they’re sending her home. Still having a heart rate comparable to you running as fast as you can. Still having chest pain. Still not well enough to be home, but having no choice. So we do our best to keep her home, and the cycle continues.
A Doctor being pleasant to her face, going into the hall and saying he doesnt believe her, and to verify with her doctor around 10pm on a Sunday, because there’s no way that hospital couldn’t know what’s wrong… Well they don’t, confirmed by her PCM…
We have a mountain of evidence, diagnosis from multiple doctors (including the same hospital), even more doctors saying it all points to something like an infection, just not sure what, but all of them refuse to believe what’s right in front of them.
If you catch Lyme early on there’s still a 40% chance the initial treatment won’t work. But after that its ok for doctors to say its resistant and there’s nothing they can do… Most hospitals operate this way, and so many people are out there in our same situation. Others have been treated by LLMDs for long periods of time and gotten “cured” or at least remission.
We were told to move or seek help somewhere else by one of the top hospitals in the country. Because they don’t know what’s causing it, but cant blame it on anything else either. All know it’s organic in nature, but refuse to believe it could be Lyme and some common co-infections because it’s ok to just say there’s nothing they can do even if it is…
She even had to mix her own medicine while in the ER. They gave her the go ahead, but it’s not the best place to do any of this in an ER room.
We have to go back to her LLMD in New York. The one out here would be more than triple the price and even with travel and it being hard on her, we have no other options out here, or at least that’s the way it seems.
Please if you can donate to our gofundme, PayPal if you’d like works as well. We’re struggling. We can’t relocate without making things much worse, or possibly killing her… We don’t know what to do other than ask.
Tomorrow I’m setting aside time to figure out how to upload the audio recordings, the updated letters, and whatever else we can. It’s amazing… How can we get help here when the doctors don’t want to believe the tests they ordered? Or the letters of explanation from her own primary doctor?!
Please share, please keep us in your prayers, and please help if you can. She’s been failed by her doctors and specialists here, and I refuse to let her down too.
Thank you for reading,