Lately Bella has been off FB because she posted a link to the blog and asked people to donate and share, and people started being mean and overbearing, the stress was just too much. So she took a break from her only connection to the outside world other than me. Somehow just her account sign in sparked a whole other thread of people being mean and worse than the last time, without her even posting anything at all. So quick to judge because they don’t understand, and refuse to even look through what we’ve written over the last year or so, and then trying to threaten calling cops or CPS because of their own bullshit. Like we don’t have enough going on already.
People need to grow up, and stop with the hate. I don’t understand how these adults can live with themselves being so messed up twords a person so sick, who’s only crime was asking for help. I cant stand people, and times like this make me happy i have severe anxiety and PTSD in crowds. Helps me stay away from them. However I’m done with my little rant on that…
Through coordinating with her doctors, Bella is being prescribed what she needs for the first round of treatment. They want to start by switching her current antibiotic to doxycycline. She’s had bad reactions in the past wheb starting doxy, but hopefully since she’s switching from rocephrin it won’t be too bad. Also we have to have rocephrin on standby in case she starts going catatonic or paralysed without it. Scary first step, because how how her body may react, but it’s the only way we’ll be able to hopefully make progress.
We’re still waiting on insurance, hopefully they’ll approve it and it’ll be easy, but if history shows anything, it will show a struggle to get her medicine covered. She has medicaid, and everything is supposed to be covered, but since it’s long term they like to say no.
Next step, while continuously on doxycycline, is Malerone. Malerone is an anti parasitic drug meant for malaria, but can also be used to kill babesia. This is the blood parasite they’re hoping is causing most of her more serious symptoms, and the herx reaction is going to be strong. Since its in her brain, causing the neurological symptoms, we’ve been warned that she is going to hate it til her body gets used to it. Lethargy, depression, and confusion will likely occur along with a whole slew of other things caused by the die off of the parasites. Always nice that the thing killing you can also hurt you worse when you kill it. This one will be even harder to get covered by insurance, but it has to be done.
Step 3 is flagyl. We’ve already been told this one isn’t covered and will be $30 per day, but we’re working on that too since we can’t afford $900 per month just for one medication.
Hardest part is we don’t know exactly how long she’ll have to be on any of these. Best guess is when she starts being asymptomatic, then 2 months after to make sure they don’t reactivate or something like that.
There’s also a herbal supplement protocol from her funtional med doctor for after all the medications and some during, but those are more optional, and only when her body is strong enough to handle the rest first.
I think that’s one of the biggest problems with chronic Lyme and Babesia. It hurts as much to treat as it does to get worse… Treating these two also treats the other infections and hopefully can get her back to living a normal life, we just don’t know how long it will be.
It took about 6 years, 4 of which we kept coming back to Lyme. All of which they still won’t admit, but her PCM and functional medicine doctor working together, without outwardly saying it is Lyme, are finally trying to treat her. Now just affording it on top of everything else is going to be a struggle.
Hopefully she responds well enough that I can go back to work in a few months, but for now im just trying to keep us here and alive. Im tired of fighting and just want this all to be over and done with, and im hoping this is the final stretch.
Im sorry if us asking for help is a burden to you, but right now I don’t have another choice. If you’re able too please donate to our medication fund, and if you cant that’s fine too. Please share so maybe someone else can or that eventually it will get to someone who can or is willing. I know how complicated and how many twists and turns we’ve had in searching for her diagnosis and treatments, but we’ve lived it. Please take that into consideration before you comment or decide to “call her out”. I’d prefer if everyone just contacted me, either here through email, FB messenger, Idk if you text or call me. Bella is sufferiby enough for people to gang up on her and call her a liar.
Thank you for reading I’ll post again soon.