Letters to the doctor

Bella is doing worse and worse. There’s nothing we can do to stop it at home. She just writhes in pain, hoping something will take the sickness down until she literally cant take it anymore and has to be seen. She’s too weak to speak, can barely lift a cup to drink, can barely eat because that sends in new waves of sickness and discomfort. I can get her to eat well maybe once a day. She cant make it to the bathroom on her own, and even pooped her pants a few days ago without knowing it. All we can have her do at home is lay in bed. Her eyes dull, her skin pale, clammy, not moving, scarcely talking, plenty of sweating from the sickness. She’s too sick to make it to her appointments. She’s in too much pain, too much sickness.
We even tried to take her to an Urgicare because the day before Bella was in the ER. The Urgicare called 911 because they saw an atrial flutter, and sent her to the ER anyways. Who saw nothing and sent her home. ER the next day because the sickness was overwhelming and they sent her home again saying they don’t know, good luck.
Im unable to dress her unless absolutely necessary anymore. The shooting pains in her brain, the abdominal pressure and aches, every part of her body aches, and we don’t know how to fix it on our own.
WHY IS NO ONE HELPING? Why is everyone simply saying they don’t know, and no one is trying to do ANYTHING any more. Even if they don’t think it’s Lyme or babesia, no one is moving in any other direction. WE HAVEN’T EVEN GOTTEN THE EQUIPMENT SHE WAS ORDERED OVER 2 YEARS AGO. Her wheelchair, bedside pulse ox, a medicine pump… Let alone her picc and port supplies. We can’t do it alone, and we’ve tried reaching out countless times. We even paid out of pocket to get a Lyme doctor to write Bella’s IV supplies so you don’t have too anymore, but we’re pushed back with no help anywhere.
How can we try to get her better, when we’re stuck between a rock and a hard place? She’s barely alive in bed waiting. SHES UNABLE TO FIGHT FOR HERSELF ANYMORE, we don’t know what to do and so much has been left for us to figure out on our own. It’s not right.
Her service dog only sits and lays on her now, alerting me every so often, but what can we do? The ER isn’t set up to handle her, but it’s way too much for home care. Any time she’s admitted, they take one look and send her home because they don’t know either.
She NEEDS be hospitalized while we figure out how to care for her PICC at home, but again no one wants to do that either. Last time they almost called security just for us asking for help and letting them know it’s unsafe, but here we are. Reaching out yet again. WE CANT DO THIS ON OUR OWN.
The babesia is the biggest threat right now, causing THE MOST SEVERE symptoms. In order to treat it we need Malerone. Simple as that, it’s gone too far to be treated in other ways. She’s too far gone for the natural support protocols.
We’ve done EVERYTHING asked of us. She’s done un needed procedures and come off meds simply to show what happens. We are lost and at a stand still and NO ONE is doing anything. No one can put it to a diagnosis, other than those who say it’s Lyme and babesia, but aren’t able to help because they can’t order her meds or supplies.
We can’t move, Unfortunately we’re stuck here. So now she sits feeling like DEATH every single day in more and more SICKNESS, and all we get is “figure it out yourself”? HOW IS THAT OK?
Why is Bella so sick and the only positive testing the ones being IGNORED? Everyone says it’s biological in origin but no one seems to know what it is, but it cant be Lyme or Babesia? None of it makes sense to us and no one will explain it.
WHAT ARE WE SUPPOSED TO DO? At least most cancer patients and other terminal patients know what they have, or have some form of treatment plan, but Bella is just supposed to take I don’t know as the answer? What are we supposed to do? Im tired of having to try and console her while knowing nothing more is happening to get her better, no matter how hard we try.
We’ve given the research, the testing, even books on all of this to show how well it all aligns with her symptoms and conditions, and we’re all failing her. No one listens.
Something NEW needs to happen, WE NEED HELP, and we need it NOW. What are our next steps?
We no longer have time for wait and see. We need action. We cant just let her die like this. We are being failed on so many levels. We need a plan and we need it now. We need her treated and we need it now. We need an answer.
Also we’ll need medical transport to make it to your appointment Friday.
His reply:
Brett: I wish there was more that our medical team can offer, but we honestly do not know. I see that Isabella was in ER yesterday and the ER staff felt she was stable for discharge. However, if you feel she has worsened since yesterday, then I recommend taking her to main campus ER. I do not have other recommendations or advice beyond that.
As you know, we have a disagreement about the role of these chronic infections in your wife’s symptoms. I remain dubious about the need for additional antibiotics.
Me again:
Even if there is debate about the infections and whatever. There is NO DEBATE ON HOW SICK SHE IS AT ALL.. ITS DOCUMENTED CLEARLY.. Some of it BY YOU.. If it is not those infections, THEN immediately find out what it IS THEN and treat it immediately. Its 2019 there is no excuse for this blatant lack of care her iv med supplies and the REASON SHE IS THIS SICK AND CONSTANTLY DECLINING…. ARE EXACTLY WHAT? THIS ISN’T HOW A NORMAL HUMAN IS.. WHAT IS HAPPENING. WHY DO WE HAVE AN IV AND NO CARE.. WHERE ARE THE MED EQUIPMENT.. WHAT IS GOING ON WHY IS SHE SICK AND WHY IS NO ONE FINDING OUT OR FIXING THIS.. If you don’t know find out.. Reach out to everyone until we do know.received_2808762239188447.jpeg
She is too ill to be taken care of at home.. We tried the nursing home.. She is too ill they kept calling 911. Someone is lying. This has literally got to be illegal. If its not lyme and the 15 other co infections than what is it. What are you doing to find out.. If you cant and you refuse to treat what WAS found and what doctors told you it was what is next. This has put her in literal direct danger. This is openly failing. What do you want us to do.. We did all you told us to do INCLUDING going to the Lyme dr in New York. I, myself asked you several times at several appointments and you told us to go. Then its ignored.. Then Dr. P told you. If its not those than what exactly are we doing besides waiting for her to die? Its real easy with no supplies. I sent you the recording twice when you told me IT WAS MY JOB to MAKE her compliant for IV SUPPLIES which it is not.. And still I tried.. They told us WHY. It was sent to you. Regardless you are meant to keep her safe and healing.
Both of which are not happening.
Still waiting for his reply at this point, if we even get one… its been a rough past few weeks.

3 thoughts on “Letters to the doctor

Add yours

  1. That’s beyond aggravating, I’m so sorry 😦 I was diagnosed by a geneticist in Boston and then confirmed by a Functional Med doctor. It’s worth pushing for answers! I’ve also heard of immunologists diagnosing it. I don’t know where you guys are located but there is an amazing Mastocytosis center in Boston. Praying for healing and answers!! XO


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