When Bella was first diagnosed with Chronic Lyme, they didn’t treat it because she had already been on an antibiotic for a month. Also chronic lyme disease is a controversial subject, and a lot of the bigger hospitals don’t recognize it as a real thing. The call it post lyme syndrome, and there’s nothing they do for it. The closest LLD (lyme literate doctor) we were able to see was in New York, and we got an appointment as soon as we were able. We tried hard to get her doctors here to treat with CDC guidelines, LLD protocols, and anything we could find on the subject; but again her doctors hands were tied. There is an LLD closer in ohio, but it would have cost almost double what a trip to New York for the night and her appointment with the doctor out of pocket than to do so. We had to chance the trip, barely being able to cover gas.
Seeing the doctor in New York was a glimmer of hope at the time. He was determined he could help, and had a protocol he made tailored to her symptoms and how long she had been fighting it. At the time, the only good days she had were when she was inadvertently on the protocol that he made for her. It was the hope we were looking for. We barely made the trip, prayed we didn’t have to go to the ER or somehow miss our appointment. They were very understanding, and it was an overall great experience. She had more good days, but it wasn’t the end all for everything going on.
It ended up being help, but no where close to the end of everything. The fixes were temporary at best, and there were still several co-infections being ignored. It wasn’t until we found a stand alone doctors office that we trusted and liked, to ensure she was able to even start the protocol. Fighting insurance, and so much stress on top of everything else to even start anything. Everything is a fight.
It’s not hard enough being sick for so long, every aspect of treatment or diagnosis is a fight. We’ve proven doctors wrong so many times, even specialists showing them the CDC practitioners guides saying this is what it is, how to treat it, and you’re the one to treat it… Doctors hate being proven wrong. I think that’s one of the biggest things we’ve learned. It’s so much harder trying to fight to live when you’re also having to fight those who are supposed to be there to treat you.
Sorry I think I lost some of my steam writing this, trying to do multiple posts tonight. I still want to post it because though this post is short, it still shows how far we’re willing to go in pursuit of a cure. The second trip to the mayo clinic was mostly for genetics. Bella’s entire system went out of whack getting sick, and now has so many allergies that they can’t even keep track of them all.
Even in all the pain, she refuses pain meds, because we found out her body processes them so quickly her body acts as if it’s overdosing and then it’s out of her system in about 2 hours. The food allergy test showed she could only eat 3 foods without having an adverse reactions. We even tried a diet of only chicken, soy and rice for a while, and it was hell. After a while it was easier to eat, but her stomach is still hard to please.
The meds she is on, are mostly supplemental and holistic at this point, less the antibiotics and the treatment for her blood infection. It’s hard to find balance, and so easily tipped in the wrong direction, every day has the potential of being good or bad or both.
Any good day you may see, know there’s more than enough time down and out that we don’t show. It hurts to see every single time, but it’s our life.
I’ll end tonight here, where hopefully I made sense, even where I lost my place and kind of went in a different direction. I poured a lot of heart and soul into my other post tonight, and I hope it’s even a little bit impactful. We’re not lazy, not trying to get a free ride, not trying to trick people or anything of that nature. We’re just trying to do anything we can to help Bella get better so we can lead a somewhat normal life. For that I unfortunately need a bit of help, and that’s the whole point of telling our story for the world to see. I’m not sure if I ever explained that part. Thank you for bearing with me tonight, and please see the earlier post named the Truth, if you read nothing else but that. Please share it costs nothing, and please if you are able in any way to help donate at the link in our homepage. Also if you’d like follow #helpthehero on facebook and Instagram. Thank you for reading, and have a nice night. I’ll try to post more frequently.