Three months post treatment in Germany

Hi everyone.

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.

Welcoming the happy news.

Evanston - such great news about your daughter!

Sorry that you didn't get the same results. I don't think people know that hyperthermia doesn't touch the co-infections.
That's too bad.


I hope you can also join your daughter in remission soon!!!

mpost said...

Girlie said...

How low we talking? Mine dipped to the mid to high 2's for awhile. But usually they're in the mid 3's.

my WBC is 3.56 with interval range 4-10
Neutrophils are 1.45 with interval range 2-8

so both are below minimum. my LLMD does not seemed worried at all and he told me not to stop any abx.

So, if your neutrophils were in range you'd be fine. (it would boost the total WBC)
It my lymphocytes that are under range making my total WBC low.


I've never stopped abx for that reason either.

yancync - not sure if you will see this - I'm just wondering how your DS is doing now.

I hope he's doing well...and in or close to remission.

Wow, that's wonderful for both of you! Thank you for sharing the story - I saw your post when you were going there and am glad to get an update. Especially useful to know about Lyme vs. coinfections. Hope you also make as much of a recovery as your daughter!

I am going to try some UV blood therapy and neural treatment next week. I think it is not as intense as your hyperthermia, but it looks promising to me. (Not to mention accessible for my present situation.) Even 20-30% improvement would be a big help - as you know!

Hang in there!

CTLyme said...
What treatments, meds, supplements etc in addition to hyperthermia was your daughter on that helped bring her to remission. Was this her first time treating? How long was she sick prior to treatment? I am 23 years into this on and off IV so very curious how they treat.
Thanks!

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