Monday, we got Bella’s test results from Armin Labs. They cost about half of what we had left to get through the month, but we finally got some positive results! She tested positive for Borrelia burgdorferi (Lyme Disease), Borrelia miyamotoi (similar to Lyme, usually a bit worse), Bartonella henselae (cat scratch disease), Babesia microti (Malaria like disease Babesiosis), Chlamydia trachomatis (not the STD form of chlamydia most people are familiar with, the blood infection kind), Cytomegalo-Virus, and a slight case of Mycoplasma pneumoniae (walking pneumonia). On top of the Positive test for MARCoNS in her sinuses, it’s been fun to finally have names to all the chaotic symptoms she’s been exhibiting.
Since the only Personal Info I can see in those results are her birthday, I figured it’d be ok to link the full PDF file rather than redact anything. Fun times.
This means quite a few things. First off, Bella was correct in asking them to test her for Lyme about 3 years ago. Secondly, the positive western blot they did, but said was a past infection was incorrect. Thirdly, us constantly circling back to Lyme and having many out-of-pocket specialists saying it was Lyme, even without the proof of the Lab results we also correct, and Lastly, Bella’s care has been brushed off for years, causing her to get much worse and have unnecessary surgeries to something we are treating for now, after having to go to the ends of the earth to prove what we already knew; but kept getting told we were wrong, or they don’t recognize it due to policy…
Years of fighting for her life, us losing our careers, let alone the constant fear every single day that something else might come up, or something else might happen to make things worse, possibly could have been prevented. Implanted devices and surgeries may not have had to happen. It may have never gotten to the point where it infected her Central Nervous System (CNS) or her Autonomic system to the point where she’s having memory, speech, cognitive and motor function problems. Years going untreated so the bacteria could spread, only being “treated” when she got an acute infection that needed antibiotics to treat. Years saying the only thing that helps the symptoms is antibiotics. Years that the bacteria became immune to those antibiotics due to not killing off the bacteria fully… It’s heartbreaking to her the moments she wants to just give up and stop searching, and to know that there’s been so many doctors that refer her to psych because her symptoms “can’t be explained”, having us question over and over that we might be wrong, and actually believing them at times, abandoning Lyme and searching for something else that fits. Always to circle back to Lyme. The Co-infections are just an added bonus I guess.
We immediately faxed it to her entire medical team, and are awaiting responses. Hopefully this will be the push to finally get them all on the same page, and get her treated. It’s still a long journey ahead. She’s likely going to need a spinal tap because it is infecting her brain, CNS, and Immune system, with an admittance afterwards with 100% no moving bed-bound status for 3-5 days to avoid a CSF leak; which is highly likely since she has EDS. But we need to see how bad the infection is to determine the level of treatment. So far worse case is we have to travel to Germany to have her monitored while they heat her body temperature to 107*F for a few hours to kill off everything and then bring her back down to normal. Very risky, but for those that didn’t have complications felt better very quickly.
For now Bella is on IV antibiotics, starting Flagyl very soon. Finally got the approval from insurance, and it will be much needed to break up and dissolve the bio-films and cysts created by the bacteria in defense, so we can eradicate them from her system. It’s all very confusing and kind of annoying to figure out but basically the antibiotic she’s been on is very much needed to kill the bacteria, but we’ve kind of plateaued and the flagyl will be like bringing a gun to a knife fight. However since the infection has been raging so long, there will be a lot of die off, and lucky us these bacteria release toxins as they die. So she will be starting very slow, and will likely feel much worse for a while, as we adjust to help ease the herx reactions. She’s likely also going to start malaria drugs, oral antibiotics for the Co-infections (causing more herx), and a malaria drug.
Hopefully we can get them all covered for long term use, because from what we can gather this can take between 6 and 18 months of treatment to get back to OK. We’re already having to pay out of pocket for her Rocephrine, and that’s hurting every time.
Also good to know, a few of those bacteria and viruses can be transferred in the womb and through breast milk, so we will also have to get the same testing for Savayah and treat her, which makes me feel even worse because she can’t tell us what hurts. I just don’t know when we’ll be able to afford it.
I guess I’ll leave it there for now. I kind of ran out of steam and lost my flow. Bella got a bit worse and I also still need to finish meds for the night and shower if I’m able to, so I can start all over again tomorrow.
We’re making progress, but still need help if you’re able to donate. There’s still more testing needed, and now for savayah so we can get her better before it becomes life-long, it’s all just too much for me to handle. I need to start working on me too soon once everything else is quieted down. So please share far and wide if you can, and please donate if you’re able, I promise it all goes to a good cause of getting treatment and keeping us alive, while we fight to get the correct treatment, and hopefully don’t have to pay for that too. To make the quickest progress we’d have to get treatment from the Lyme doctor out here, who can do hyperbaric treatments and other cool sounding things that have great effect on treating Lyme, in conjunction with her current treatment; but we can’t even afford the consult anymore.
Sorry for the kind of sad and depressing blog, but I did my best to keep it light; however it’s been a very long day, and life happens. Either way please share and follow #helpthehero on other social media. Any questions feel free to ask or send me a message. I’ll get to them when I’m able. Also I’m going to start shooting for a definite post every Friday, with a few sprinkled in as bigger things happen. Wish us luck.