It has been a while since I last posted and a lot has transpired.
We were all set to head back to Klinik St Georg this summer but ran into some issues that delayed our trip. One main thing that we wanted to happen before us leaving was that we wanted to get a better idea of why this did not work for Chloe. We are very hesitant to put her through the physical and emotional toll without being ensured of success this time around. You know the saying, “The definition of insanity is doing the same thing and expecting different results”…….. So we did some additional testing, looking at mycotoxins and completing the 23andme test to take a look at her genes. We did find that she is unable to detoxify heavy metals so we are looking further into that but haven’t found anything definitive that would cause her treatment to be unsuccessful.
Klinik St Georg was puzzled as to why it did not work for her and could only suggest a new infection, which we know isn’t the case. We had some questions for Dr. Douwes that we were promised a reply on but we still have not heard back from him. That was in June.
We were all set to go the end of June but cancelled last minute because we still did not have the tests results back and had not gotten a reply from the doctor discussing the questions we had posed before leaving. We hope to hear from him soon, as Chloe is definitely struggling. her seizures have returned full on and they recently had to increase her seizure meds. She is also having vision disturbances and joint pain pretty constantly.
My sister passed away quite unexpectedly July 3rd which completed rocked our world. As anyone familiar with Lyme knows, stress is a huge problem. Chloe is not only dealing with the loss of her Aunt who was only 30, but also an increase in symptoms. She has pressed on though, never missing cheer practice and working twice as hard as everyone else to memorize the cheers. This kid is one tough cookie.
This whole process is extremely frustrating and heart wrenching. We seem to be completely on our own. Nobody can give us answers as to why Chloe was not cured when I was, and our next step is so unclear. I did hear from a good friend and fellow Lymie who was treated at Klinik St Georg along with her 18 year old son a month before us. They just got their post treatment test results back and she’s negative now but her son is still positive. So there’s another young person that treatment failed for. I just wish we knew why it works on most everyone but them.
It seems that retreatment in Germany is still our best option, we just wish there was more answers.
2 thoughts on “Searching for answers ”
We were there in June and looked for you. Now know why we didn’t see you. We are two months post treatment and have yet to do labs. Out 19 yr old is doing well. I’m ok and our 15 yr old is ok. Will keep you posted. Blessing to Chole.
Shannon — can I reach you this way? I’m responding to the email I got that you had a new post, and I’m not sure if this will reach you?
I’m a fellow Lymie and wanted to give you some ideas of what worked with me after 25 years of the same old non-diagnosis, etc. But I want to be sure this gets to you before I send you a long email!
Please let me know!
Michelle Fields — Suzy Harlen’s sister (Helena)