So tired of all of the struggle

I’m tired. Fighting this and trying to keep everything going is tough. It’s taken everything from us. My military career, Bella being able to play with or raise Savayah for the most part, Bella’s independence, my ability to work to ensure we have everything we need, friends, family, even strangers look in disbelief because it’s just so much. We know it’s a lot, and seems surreal, but we live it every day. Every day, every setback, every action we worry that it’s the thing that will make it impossible for Bella to get better, or it might be the day her body finally gives out, or worse… The stress of that alone is enough to cripple most, and we push forward.

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The doctors from when she was admitted said we’ll have to move to get better. Being one of the top hospitals in the USA, most people can’t believe it when they say they don’t know. With letters from her entire medical team about 2 years ago saying she needs to go to the NIH, un-diagnosed diseases program, people still don’t believe. When we found a doctor who said it was Lyme and Babesia, and created an entire treatment protocol for Bella, the doctors here didn’t agree. With doctors and specialists saying it’s not her head, her heart, or anything else that’s causing all of her symptoms, sating it’s an infection, the only doctors who say it isn’t is Infectious Disease… The tests from multiple labs, including the hospitals, all showing positive results for Lyme and a few other infections, they’re all wrong too somehow… Doesn’t make sense to me, because we know what she has, and what we’re fighting, we just need help.

Functional Medicine is trying to work with Bella’s PCM to try and get her treated. With FM hands tied when it comes to Lyme and a few other things, there’s nothing the doctor can really do without losing their job and possibly licence. We have a nice recording of the appointment, and looks like I’ll have to find a new place to be able to upload and link to the pages themselves, since I can’t afford to pay for a premium blog site.

That’s also who we’re down too at this point. Functional Medicine and her Primary care manager. One can’t do anything without help and “off the record”, and the other relies heavily on her specialists because of how complex and complicated Bella’s case is. However Infectious Disease decided to no longer follow her case because he doesn’t know, and refuses to believe it’s Lyme or babesia, or the tests are correct, or maybe he just wants to cover his own ass… Who knows for sure, all we know is what we were told, which is he’s signing off the case, and he doesn’t believe it to be Lyme.

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During her appointment he doctor looked at me and said I need treatment too. The way this can spread in so many ways (sexualy, congenitally, body fluids, and even breast milk), could have gone to me or even Savayah. We can’t afford the testing, and even with it we’re struggling just to get Bella to be stable enough to stay home, let alone multiplying it by 3. I’ve never been wished to have something like H. Pylori, but if I did I’d get the right meds to take care of the Lyme too, but it’s a stretch, and even then it may not be enough.

So Bella’s FM doctor’s recommendation she’s going to talk to the PCM about is IV doxycycline, IV Flagyl and Malerone. 2 antibiotics and a powerful anti-parasitic. The treatment can be between 6 months – 2 years depending on how bad everything is, and if we can’t get the medicine covered there’s no way we can afford them all. Hoping her body can even handle it all.

We even talked to a Lawyer yesterday. He seems iffy about the case itself, because though she has the diagnosis, and though she has the tests, and though she has some doctors who believe and know what this is, there’s too many who think otherwise. We need the expert witness, preferably an LLMD who’s seen her before. We have to dive through all the recordings and bring out anything relevant, and hopefully build a case, but without an expert testimony, they won’t even attempt to pursue the case. Most lawyers wont even talk to us because of who we’d be taking on, what hospital we have to take on, but at this point if they aren’t willing to help, what do we have left to lose?

We’re lost, broke, and struggling every day. Have to get her doctors either on board or back to New York to see her Lyme Doctor, and hope we can figure out a new way to treat her. We just don’t have the ability to do all of that without help. So I have to keep asking as much as I hate it and as much as it hurts. Please if you’re able to donate, anything will help. Please share far and wide so maybe someone else can if you’re unable. I don’t know what else to do. Thank you for reading.

-Brett

3 thoughts on “So tired of all of the struggle

Add yours

    1. She has Medicaid, getting a long term antibiotic is rarely approved, and she needs 2 as well as an anti parasitic. She can’t go to the VA because she’s not a veteran. I have to go to the VA for my care since i don’t have insurance for anywhere else.

      Liked by 1 person

  1. Did ever see the movie “Brain on Fire?” The Disease in the movie sounds a little bit like Bella. The women in the movie has some type of rare autoimmune disease. The doctor that found the disease was in NYC. If you can’t watch the movie then maybe look up specifics of the movie and the name of the disease. There is also a book written by the girl that had the disease. I believe she is a reporter at the NY Post.

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