Today was like the last few for Bella. In more pain than imaginable. Unfortunately she wasn’t able to rest with an early appointment downtown. Infectious Disease, the first time since we got the results back showing her Lyme and co-infections. So we packed her bag with all her emergency meds, and set out.
We did our best to keep her as stable as possible, I even had to mix her rocephrin in office. She could barely speak without making her headache worse, but this is the doctor who should be able to help. We recorded it all as we do all our appointments. Mostly so we can remember everything we went over and ensure no misinformation. From what I can understand, even with piles of positive results from multiple labs, including the hospitals, he still doesn’t believe it to be Lyme. He barely touched on the co-infections, and we’re not entirely sure of the outcome yet.
He wants to do a spinal tap. Next week he is planning on hospitalizing Bella, taking her off her antibiotics, observing what happens when she comes off. Day 3 would be the lumbar puncture. Then healing, where she would have to lay completely flat for a minimum of 3 days. However as I understood, and as Bella understood was different, and listening to the appointment, I feel she’s correct.
We’ve done it all before. In January when she was hospitalized last for her extreme headaches, they already saw that she got exponentially worse, quickly. From extreme pain, to catatonia, to paralysis. Where they tried their hardest to induce a pain response but nothing. Where they found the only thing to help get her back to where she was, was antibiotics and steroids. This is the same stay where we met her current Infectious Disease doctor by chance.
He’s already seen how quickly she goes down, and how far. She was there three days. Day one was her getting that bad. Day two they listened to us and what has worked in the past. Day three was mostly just them trying to get us out with that same plan. Not figuring anything out or fixing it, but putting a band-aid on and hoping someone else could figure it out, which I think we did. However her doctors still need more and more proof… It’s hell. Also the same treatment no longer works, but instead seems to intensify her symptoms. It may have been what pushed her over the edge to need the ER earlier this week.
As far as we can tell, he wants to observe her get bad, do a spinal tap, and test for the broad range of things they test for. However not testing for the Lyme or other bacteria and viruses that we believe to be causing it all, because we have piles of proof all pointing to it. He seemed concerned and genuine when talking to us, but still doesn’t believe it to be Lyme.
He even debated us a little on the validity of the testing, and we countered with the validity of theirs, he’s basing it on. Kind of a stale mate, but none the less we need doctors to prescribe and follow to get her healed. It’s just infuriating. The only doctor she has at the hospital that believes it’s Lyme has no power to treat it, and the rest are just trying to pacify her or don’t believe it at all.
So we sent a few messages over to him, and hope to hear back soon. The only reason he wants to do all this next week is because he will be out of town through the weekend, and doesn’t want to pass this off to one of his colleagues since her case is so complicated.
With the amount of risk involved for Bella it wont be worth going through it all unless he also looks for the things we keep trying to prove over and over again (successfully). The amount of sheer hell Bella will go through just coming off her meds to do the procedure is enough of a risk, let alone the spinal tap to come after. She has Ehlers-Danlos syndrome, and one of the symptoms is that her body heals slower due to the elasticity of her skin and connective tissues. Cerebral Spinal Fluid (CFS) leaks are common, and can cause a whole mess of issues, let alone putting a hole in purposefully. She may need a blood patch to even heal from it, where they inject a bit of her blood to clot in the hole they have to make to try and stabilize it. Which sounds super fun (sarcasm).
So we sent the messages to ensure the risk is worth it, and to have it in writing, rather than something verbal that can be denied. We get lied to too much to not anymore. So for now, we just try to keep her home somehow. Hopefully it doesn’t get too bad and need more before we get answers back about it all, but it’s all up in the air. She’s barely able to do anything right now due to the pain. Her words are slurred and elongated bad. it’s presenting more and more neurological, and we just don’t know how long we can keep it up. How much she can endure.
We’re trying so hard to get her better, and I’m not sure if people understand. She has to text me most of the time because it hurts too much to talk. In the same room, we still have to talk through text. At this point we don’t know what to do next. We can’t afford it on our own. We need them to prescribe the treatment plans we brought to them from the Lyme specialists they sent us too. It’s the only way for her to be treated correctly, and after every single time, they still don’t help. It took 3 years just to get step one of like 20 done. I don’t know how we’ll survive the rest if they don’t take it seriously…
We’re falling apart, and need help. More and more it’s looking like we will have to find a way to do it all ourselves. We have the prescriptions already from the doctor in New York. We just can’t afford them. It’s hard enough just getting the one we’re paying for now, but it’s a necessity. We can’t afford to do anything but scrape by, and if we can’t figure out the house we won’t even have a place to live soon.
Anyways I’d like to end on a positive note. Savayah has been progressing a lot the last few months. Saying more, and being less aggressive. Playing more with us rather than near us. Even listening more. I know she’ll get past this all and be able to thrive as long as we can keep it all going. She’s our reason for pushing so hard. So she can have every chance in the world. She’s amazing like her momma. They’re both fighters and I know they’ll both make it to where they want to be someday. I’m doing my best to make sure of it all.
I love these women so much. I’d do anything to help them get better. So I ask you all to please donate if you’re able, so I can do more to keep us ok. Please share so maybe someone out there can help even if you can’t. Either way thank you for reading our story thus far, and hopefully someday soon they can be more positive and happy. Right now I think we’d settle for even one good day as a little break from the despair. Thank you again.
PS I’m working on adding the audio files, but they aren’t working. So once I figure it out I’ll upload the full appointment as soon as I can make it work with me. I’ll likely have to turn it into a video and put it on YouTube or whatever, but It’ll come soon enough. Thank you for your patience. Also I’d like to take this opportunity to again ask people to donate and share if they’re able, we’re in a real bad spot. Talk to you all soon. -Brett