I haven’t posted in a couple months, because I have been super super sick. This post is going to be about my experience at a clinic I went to in Germany. I went for a little over three weeks.
Before I went to Germany I was so sick. I was unresponsive, having seizures, couldn’t eat or drink, couldn’t get out of bed, super bad vertigo and neurological problems etc. I was going to the ER 1-2x a week. Now I am able to walk short distances, I’m able to eat and drink, I’m able to speak, I haven’t had a seizure, I can get out of bed at least to get food and go to the bathroom. Sometimes I’m even able to leave the house and hang out with friends. Like today I went to the swimming pool with my friend Anais. I can’t swim, but it was nice getting fresh air. I am definitely better. I still have a long way to go until I’m 100%, but I’m getting better instead of worse. I still have to detox and kill my co-infections. Co-infections are basically other diseases you can get with Lyme. I’m pretty sure that I don’t have Lyme though, because that’s what the doctors in Germany said. I still have most of my symptoms though. I’ve heard that the co-infections are usually what’s making you so ill. Anyways here’s what happened in Germany…
My mom and I went on June 11th 2016. Neither of us had ever been to Europe before. We took a direct flight from Denver to Munich. It was about a 10 hour flight. We then took a shuttle to the clinic which was about an hour away. The clinic is named Klinik St. George and it’s in Bad Aibling Germany.
When we got there one of the doctors met us and showed us our room. It was a nice room, but still looked like a hospital. It had buttons to press, so you could call for a nurse. It also had an IV stand and hospital beds. The kind that your feet can raise or you can lay on an incline. I remember us thinking that the pillows were huge too. We then went down to eat lunch. After lunch I was supposed to do tests, but they didn’t have my schedule yet. We didn’t do anything until the next day.
First day of treatment I did some tests and got IVs. We still had to wait for my schedule, so I didn’t start treatments until the afternoon. I had different treatments depending on the day.
Initial and Final Lab Controls
– Dark field blood analysis (when indicated by our physicians, this may also be substituted by other tests like VCS)
– Infusions with Vitamin C, chelation, selenium, procaine, antibiotic
– Ozone Therapy (intravenous and rectally)
– Singulet Oxygen Therapy
– Laser Therapy (red and green)
– Magnetic Field Treatment
– Detox footbath
– Colon cleansing
– Systemic Whole Body Hyperthermia
– Detoxification Program
– Infusions/detoxification program are established by the physicians according to the individual situation of the patient.
The biggest treatment was Hyperthermia. They heated my body to 108º and the chamber I was in was about 148º. I had this done twice. This was the hardest treatment. I was put to sleep and hooked up to many machines, so they could monitor me. It takes about 7-8 hours. I don’t remember two days after that treatment. All I know is that I got really sick. I was unable to eat so they gave TPN, I couldn’t move, had bad vertigo, horrible nausea, pain, fatigue, and the second hyperthermia I was unresponsive. Both times I had it on Friday, so on Monday I would start the detoxing treatments. The second time I remember more. I actually woke up in the chamber after the treatment was done. A nurse helped me into a wheelchair and brought me to a recovery room. You stay in a recovery room for a night just to make sure you’re okay. I thought I was fine. I felt tired, but not overly sick. I watched Modern Family with my friend Kaitlyn. The next day I felt super sick though. Basically the same as the first one. I didn’t start detoxing until a bit later then I was supposed to, because I couldn’t make it out of bed, but I got a lot of IV’s. Through my whole time at the clinic I was almost always hooked up to some kind of IV. I’m so glad I got a port!
I stayed a third week, because of how sick I was. I got Plasmapheresis and Cell therapy. The Plasmapheresis was pretty intense too. Not as intense as Hyperthermia, but still not too fun. I was totally awake during it. They took out half my blood, maybe a bit more and cleaned it. They separate the blood into bad plasma and cells. Then they gave me new plasma in an IV with the rest of my good blood. I remember feeling faint, but 100x more. I looked at my arm and it was white and purple like a dead person. I wasn’t told what was going to happen before the treatment, so I didn’t know what to expect. Plus the doctors didn’t speak much English, so I couldn’t ask them questions. It’s supposed to take 4 hours, but mine took 7. They had to use my port and the needle was small. The machine beeped the entire 7 hours. Apparently it was still working though. It also kept stopping, so they had to give me a lot of heparin. I passed out a few times. It was super weird, I thought I was going to die at the end.When it was done I felt like the inside of my body was buzzing. I then went back to my room and ate, so that I would feel better. That night I went out to dinner with my mom, crazy! I wish I had done two, because it’s very good for detoxing.
The last week I also had two shots a day for 5 days. These were the Cell therapy shots. They were cells from sheep and pigs specific for different parts of my body. I don’t know much about it, but it’s supposed to help your body create new healthy cells. It lasts for a year.
The best part though, other then getting a bit better, was meeting so many people who understood me. The community was great. We were all going through something so hard. It didn’t matter if you had Cancer or Lyme. We all did very similar treatments. We all felt horrible. It was amazing! I wish I had that community here in Boulder. The doctors and nurses were nice too. My favorite doctor was Urs, he was very sweet and kind. The nurses I liked were Kristof, Mo, and Christine. They treated me like a person, not just another patient. I hope I never have to go back there, but at the same time I miss all the people. It get’s pretty isolating at home. I’ve lost all my friends, but two. I’m so grateful that Sara stayed with me through all of this. I also have Anais who is my massage/physical therapist, she is my best friend. I see her at least twice a week for a couple hours. I’m glad I get some kind of social interaction regularly. I wish I had Lyme friends I saw in person, but it’s actually looking up. I’ve talked to two girls who live in Boulder who have Lyme. Both would like to meet me. Hopefully I can become friends with them. I have Gabbi and some other Lyme friends who live in other states, but I want to be able to physically see people.
I know people wanted to know what my experience at the clinic was like, so I hope this helps. If you have more questions, you can comment and I’ll try to answer them. I didn’t go into too much detail, since I was there for 3 weeks. If I did this would have been a very long post.
Here are my symptoms: Chronic fatigue, Insomnia, Cognitive issues (hard time spelling, word retrieval, memory), Joint pain, Sharp pains, Nerve pain, Arthritis, Allodynia, Dystonia, Depersonalization, Derealization, GI/menstrual cramps, Digestive problems (nausea, no hunger/thirst, bloating, stomach pain, dry heaving etc.), Epstein Barr (CFS), POTS (heart palpitations, sharp heart pain, lightheadedness etc.) PTSD, Aches, Muscle spasms, Lung pain/pressure, Hard time breathing, Low SATS sometimes (use supplemental oxygen), Dizzy, Fever, Night sweats, Hot flashes, Body temperature is off, Skin burning, Super Itchy (give myself welts from scratching), Whole body weakness, Hormone problems, Sore throat/cough, Sensitive to light, sound, and smells, Ear pain (TMJ), Ringing in ears, Headaches, Migraines, Inside body shaking/buzzing, Twitching, Paralyzation, Feeling bugs crawling on me, Feeling airy (like I’m a ghost), Hallucinations, Depression/suicidal, Vertigo, Bartonella rash (tiger marks), Numbness, Anxiety, Paranoia, Fear, Eye sight problems, Muscle pain, Feeling like your brain is short circuiting and can’t tell your other body parts to do things, Feeling like you have the flu constantly, Sharp skull pains, Brain buzzing/shaking, Seizures, Seizure auras, Can’t speak/muteness, Restless leg syndrome, Feeling like my limbs need to be ripped off. I have more symptoms, but I always forget some.