I thought I should touch base with everyone and give a three month post Germany update. As many of you know, my 11 year old daughter and I went to St George Klinik for whole body hyperthermia treatment. It literally saved my daughters life. She is totally back to her old self, playing travel basketball and soccer again, running around all the time, smiling and laughing again non stop, able to think and read and do all her homework. She is totally normal. Literally a miracle treatment for her! She was also very Lyme heavy in her presentation: classic joint pain, brain fog, inability to think, extreme fatigue, etc. The doctors told us over and over again that the treatment only takes care of Lyme— not coinfections.
I, on the other hand, am not as awesome as I’d like to be. I’ve had some positive changes for sure: I haven’t had a fever once since returning from Germany, I don’t walk around feeling like I have the flu 24/7, I don’t have light sensitivity, perpetual nausea, no appetite, etc. However, I’ve had some new symptoms I’ve never had emerge: a ton of weird/freaky neuropathy, feels like there is fur or crystals growing on the inside of my legs that starts from my feet and moves up, feeling like I need to be moving my feet and legs all the time, pain in my hands, weakness in my hands, sometimes when I walk outside in the cold it literally feels like someone is splashing cold water on my legs, hands fall asleep. So just a lot of weird neuro stuff.
My hunch is that Bartonella has stepped in as the predominant issue. I’m trying my best not to go back on antibiotics for now. Taking tons of herbs. I’ll be starting intensive IV ozone 4 days a week for a good month or two. If that doesn’t help, then I’ll likely go back on antibiotics. Dr H is considering dapsone, rifampin, mini cycling for me first. If that doesn’t help, he mentioned, rifampin, minocycline, Pyrazinamide.
Rifampin was great for my Bart in the past but has permanently messed with my white b,old cell count. It’s been really low ever since going on rifampin. Ozone might help with that.
Anyways, St George is an AMAZING treatment if Lyme is your one and only issue. Life changing and I am ssssoooooooo grateful we went! My daughter is totally and completely living again and that makes everything so much better! I could not recommend the hospital enough. They were incredible there. But if you are dealing with other coinfections that appear to be more of an issue than Lyme, have realistic expectations that you will likely need to address the coinfections upon return from the hospital.
I hope everyone is hanging in and doing ok! Please let me know how you all have been: Girlie, Rikky, Traveler and the rest.