Sick and tired of being sick and tired

So the last two weeks have been super long. Sorry for not writing, I just couldn’t find the time or energy to keep up my daily tasks, take care of Bella and savayah, and the house project I’ve been working on. The appointments have been countless, and trips to the ER many. But it started out good enough.

Two weekends ago, likely just after my last post, Bella had a good day. We visited a friends house, and to Bella’s adoptive mom’s BBQ. Bella was happy to wear “real” clothes. She was able to be up and around the very few people who actually showed up. Lots of last minute cancellations, but we tried to have a good time anyways. From there to our buddies house, where we also grilled a little, and hung out. She tried hard to pace herself, and not push it too far, and by the end of the day she didn’t quite crash. She was weak, and hurting, but she made it through a day. The next day, she woke up in pain, but it wasn’t too excruciating. She pushed through and we had another day, letting savayah play with a friend most of the day, and doing our best to keep it kind of chill. Bella determined to have another good day pushed through most of the pain, having to stop a few times , but mission accomplished. Well deserved rest after night meds, and a bit more pain, but she made it. Day 3, harder and harder to get up. Still manages clothes, and we don’t plan much other than hanging out at a friends house to let the kids play together and chill. So that’s what we did. She tried helping the kids play dress up, even was able to do some cute braids for their princess dresses. Come time to go because it’s getting too much. Turns into long days and longer nights. Bed bound, but fighting hard.

0518191520

She had a good 3 days. We count them all as good days because she was able to not only get dressed but leave the house and attempt to be social. Even with the pain and headaches going on, she forces a smile to feel normal. Because it’s not as bad as the pain that makes her unable to leave bed, she wants nothing more than to have a day with us. To be a mom, a wife, and a friend. Those three days that are so insignificant to the rest of life, our little slice of normal, are worth everything to her. It’s what we aim for with slightly less pain as a goal. Even if they were short lived, and not as great sounding to everyone else that can do this at any time, they are what we’re working to with the end goal being relatively back to normal.

0511191909a_HDR.jpg

Med’s have been messed up the whole time. We have to pay the entire price out of pocket for her med’s now. We had to switch pharmacies to get the vials to mix her medicine ourselves to make it cheaper and honestly more portable. We were having to pay almost $250 a week for Bella’s med’s and have now got it down to around that per month. Still working on getting insurance coverage since they’ve been having trouble getting it approved and sending it to the wrong places, but hopefully we can get not only that, but her new IV flagyl into the mix soon as well. As we research more and more it’s showing that it’s a much needed component to penetrate a bio-film the Lyme creates. Oh and also got back the blood tests from Armin Labs showing a large infection of borriella burgdorfei which is the cause of Lyme disease, meaning we have blood proof of her infection. Waiting to get the rest of the results when we can pay them the rest of the bill, but having to pay for her med’s really hit us hard.

1 Borrelia b. Full Antigen ! 3 SI
0-1 = negative
2-3 = weak positive
> 3 = positive
1 Borrelia b. OSP-Mix ! 5 SI
0-1 = negative
2-3 = weak positive
> 3 = positive
1 Borrelia burgdorferi LFA-1 1 SI
0-1 = negative
2-3 = weak positive
> 3 = positive

The results of the EliSpot tests indicate current cellular activities against Borrelia burgdorferi.

Explanation of antigens:

Borrelia-burgdorferi Full Antigen: Borrelia burgdorferi B31 reference strain (Borrelia burgdorferi sensu stricto)

Borrelia-burgdorferi Peptide-Mix: OspA from Borrelia b. sensu stricto, Borrelia afzelii, Borrelia garinii + OspC native + DbpA recombinant.

Borrelia-burgdorferi LFA-1 (Lymphocyte Function Antigen 1) Own body protein + Borrelia burgdorferi sensu stricto (shared epitope). LFA1 can be associated with autoimmune diseases: collagenosis, Rheumatoid Arthritis, vasculitis. If positive or borderline positive look at: ANA, CCP-antibodies, ANCA.

2 B.burg.+afz.+gar.IgG positive ! 1,188 Ratio
Ratio 0,01 – 0,89 = negative
Ratio 0,90 – 0,99 = weak
Ratio >= 1,00 = positive
2 B.burg.+afz.+gar.IgM positive ! 1,258 Ratio
Ratio 0,01 – 0,89 = negative
Ratio 0,90 – 0,99 = weak
Ratio >= 1,00 = positive
2 B.burg.+afz.+gar+round bod.IgG negative  0,667 Ratio
Ratio 0,01 – 0,89 = negative
Ratio 0,90 – 0,99 = weak
Ratio >= 1,00 = positive
2 B.burg.+afz.+gar+round bod.IgM positive ! 3,625 Ratio
Ratio 0,01 – 0,89 = negative
Ratio 0,90 – 0,99 = weak
Ratio >= 1,00 = positive

The antibodies indicate humoral immune responses against Borrelia burgdorferi.

Please look at the results of the EliSpots and the CD57-positive NK-cells.

Tickplex is analyzing research parameters, quantified under  research project conducted at the University of Jyväskylä in Finnland.

Disease diagnosis is based on clinical symptoms and differential diagnosis, supported by laboratory test results and other diagnostic possibilities.

Serological tests like Tickplex support the diagnosis of infections.

validated by
Dr.Armin Schwarzbach

I wanted to add the whole thing, but couldn’t figure out how to cut out the personal info so hopefully the results do for now. This lab is showing current infection and body activities against the Lyme, and we’ve been trying to tell Bella’s doctors for quite some time this is a major factor in her getting better. We’ve been real good about her med’s on time and on schedule regardless of anything else going on. Even hooking her up at a doctors appointment and the ER once or twice. Since we’ve been doing so well, I think she’s been doing a little bit better, but for it to really work we need to add the Flagyl, we just can’t afford right now. As soon as we can get in to work with her PCM’s nurse to submit her orders to medicaid correctly, hopefully it will all be covered and we can treat her and get her better and start on her 11 step protocol to not only heal, but to rehabilitate her body.

The days have been longer with Bella in too much pain to sleep more than an hour or so at a time. rarely she’s able to go a bit longer, but it’s not good for her. OTC pain med’s are helping slightly, just not enough, and we’re holding strong as we can. The stress is getting to us and we’re getting scared.

 

0526192234_HDR.jpg

We’ve come so far, with so many impossible things happening to us over and over. We’ve been lied too, told we were wrong, and somehow we always are able to figure it out on our own, to treat her, to get her better.Without help from everyone who has, we wouldn’t have made it even this far, and I wish I didn’t have to keep asking for more, but I want to cross this finish line, so I can go back to work and be able to do it all on our own. This has been a living hell for us with so much done, and so much still left to do to ensure we get Bella to that point of healing I don’t have to be on 24/7 standby for an emergency.  Maybe one of these days we could get a home health aide that actually shows up or does their job. Right now we are alone again. No home health aide, the one who was here for almost 3 weeks was fired by the company, and now we wait for someone new to come available and we look for new companies who may have availability but so far no luck.

Anyways other than doctors appointments and quick trips Bella hasn’t been able to leave the house. I’ve been doing my best to clear out the basement of all the clutter and boxes, to give a real good clean and look out for any mold or signs of anything bad that could be exacerbating her condition. So far, just a lot of things to be thrown out and scrubbing everything with ICU cleaner to kill off anything I can’t see. Still trying to do as much yard work as possible to at least make it look like we have it together somewhat on the outside. Just doing what I can for free at the least.

0511191238a_HDR

Beyond that we’re just struggling along trying to figure out how to afford med’s, food and our lives, hoping that we don’t lose everything. I’ve been trying to work with my buddy here and there who does landscaping, but I haven’t been able to do it with Bella so down, and now without an aide it’s kind of impossible, unless she’s well enough to go with us and chill in the car or something while we work. Which doesn’t seem like a great plan, but if possible we’d do it in a heartbeat if it helps us keep food on the table or the lights on.

I’ll leave it at that, kind of losing my train of thought, I’m just so tired. If you’re able too please donate. We still have more tests needed, out of pocket prescriptions, and even gas money but no funds for it anymore. The truck is still in the shop, with my neighbor trying to get to it as soon as he can to see what’s causing it to make a loud knock, and as soon as we get that back we can travel to the out of state doctors and testing needed. It’s just hard, and I promise we’re trying our best to get by, but I need help, and as much as I hate to ask I have too. Please share if you can and follow #helpthehero0528190635

Since I’m not really on social media anymore and not setting up anything on FB anymore, Bella may write a few posts here and there on the blog site, so don’t worry. I’m not leaving, and I’ll be writing as often as I can, and will work harder on following through with that. It’s just been rough, and I’m sorry. Pray for us.

Thank you for reading,
Love,
Brett

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

Create a website or blog at WordPress.com

Up ↑

%d bloggers like this: