Hi Everybody from St. Georg in Bad Aibling, Germany!
I’ve started this adventure a while back. A group of friends have mentioned that in Germany they treat Lyme Disease using Hyperthermia (I will explain what this is later on). It was not until a friend gave me the courage to start a fundraiser, things got real. My family, close friends, internet friends, people from my past, people I do not know at all chipped in (and still contributing) to bring me here. A lot of coordination had to happen to make this treatment a reality for me. My mother flew into States (as many of you know I am originally from Turkey), so she can watch my kids while I am gone. My father had to make time available, so he can take me to Germany and attend to me during my treatment. My husband, my brother and my friends had to step up to make home life as normal as possible for my 3 kids, who are also sick with Tick Bourne Diseases (TBDs). My sister and her boyfriend took care of me a week prior to my treatment in Istanbul, Turkey, while I rested, adjusted and recovered from traveling across the world. My sister had to run around find doctors, who are willing to prescribe my IVs (I will touch base on this topic later on as well, I know you are all curious). She also had to find a home nurse, so I got my treatment at the comfort of a home instead of a hospital. My sister’s boyfriend took care of me during the day, which put his own work on the back burner. I know I am very, very very lucky to have such a support system.
I’ve decided to be very public with my treatment progress in hopes of creating breadcrumbs for fellow Lymeys. I get a lot of courage from the beautiful Lyme community and this is the least I can do to give back to the same community. If I had internet connection every moment of the day and they allowed me, I would live broadcast every minute of it. That is for sure 😀 Well instead I will use this one blog post to write everything about it, in a single page. I do not want anybody to come to my website and search through multiple pages to get the whole picture. So keep checking this page for more updates.
The moment the decision was made to get treatment in Germany, I chose to hire a health coach in US. Even though I had direct contact information with the hospital coordinator, I found it convenient to use Lyme and Cancer Services. Brendan, a very good guy, provided a lot of valuable information for me and also recommend a Pre, during and a post protocol that he feels was helpful to him. I took that protocol and customized it working with my Lyme Literate Doctor (LLMD) in Washington, DC. I will share general information on this topic soon on this same blog post. I did not start my protocol, until a month before my scheduled date due to lack of funds. It was also very difficult to find a doctor to write a prescription for infusions. Silly part they aren’t even antibiotics. They were for boosting my immune system and detoxing. So many doctors turned me down. Some said they did not have liability insurance, some said it wasn’t their area, some said they didn’t feel comfortable, some said they afraid to lose their license. You get the picture. I finally found a very good doctor, who is local to me that already use similar approach in supporting immune system of chronically ill people. Very expensive, but it is that way everywhere. I was supposed to go through the pre-treatment protocol at least 3 months before. I did not get to do that. I did 3 weeks In USA and 1 week in Turkey. I figured it is better than not doing it at all.
I will add the info on my protocol here, later on. Note to self come back here 😀
Trip Across the World
My flight from USA to Turkey was smooth. I flew with Turkish airlines and they were very attentive to my needs. I have done good research (asked fellow Lymeys for tips and tricks for flying) before hand. A few tips for you all.
First of all you need oxygen on the flight. This is something you need a prescription from a doctor and a note. Precipitation so they know how much to give you (although you can adjust it as you please because the tank is next to you) and the note to state 1-your life does not depend on the oxygen, 2-you are not contagious of any sorts, 3-you are healthy enough to fly, 4-why do you need it (I recommend to use Chronic Fatigue Syndrome as a reason). I had to use people’s experience and reading through some of the forms some airplanes provide. These 4 items are very, very important. You do not want to risk your probability of boarding.
What to Pack (for the flight):
- Airplane socks,
- Sleeping Mask,
- Comfortable Slippers,
- Nausea medication, muscle relaxers, pain killers, antihistamines (I didn’t need them all, but it is very good to have),
- Neck Pillow,
- Noise Canceling Headphones (Shooting Ear Muffs),
- Snacks (Now this one is really important, delays happen),
- Something to read
What to Pack (for the hospital):
Please keep in mind the hospital is in a very small town and you have a very busy treatment schedule. It will be very inconvenient, if you are missing things.
- Adapter for Europe for you electronics
- Alarm clock, if you do not have a phone
- Wet wipes
- Shower Cap
- Plastic, reusable water bottles (there is glass bottle water available, but it is too heavy)
- An unlocked phone (either with good international and data plan or to buy a local sim card)
- Entertainment devices (Perhaps an external hard disk with movies, I regret not doing this. Do not rely on the internet here as it is very spotty)
- Food (Snacks, nuts, small pastries and so on. There is a cafeteria with set hours and food options are very limited. remember you are in a different country so the type of food served is different as well)
Time to Rest:
I highly recommend you arrive a few days early to check-in to a hotel. It is important that you rest, get through jet lag, adapt and be ready for a treatment marathon. I chose to fly to my home country to rest in a home with my family. It was also cheaper to buy a ticket through Turkey rather than direct. Surprisingly getting IV treatment was way cheaper in Turkey than USA. The flight to Germany was only 2 hours.
I’ve just arrived in Bad Aibling today. Today was dedicated to check-in, vitals, consult with one of the doctors, getting the schedule for treatments, sorting out the menus of the week. St. Georg is located 100 km (i think that makes 60 miles) away from Munich. A shuttle that the hospital arranged picked us up. I had a wheelchair service scheduled ahead of time. I must admit though, Germany isn’t very wheelchair accessible. I did not like the fact there was nobody at the entrance and we had no directions as to how we needed to check in. Found the cafeteria and asked a few patients what to do. Since it is Sunday, the reception (I still don’t know where that is located at) is apparently closed. We had to find the nurse’s station on the 1st floor (that would be 2nd the American way. entry level is considered 0). They took us to our room right away. Lunch has had passed already and it was too early for dinner, so I am glad we packed food for ourselves.
I was given a package with information, including all my treatment schedule. Tomorrow, they will be running all my lab works and also start IV and other treatments. I also chose to get a port installed while I am here. I was supposed to come to Germany a few days early to get this done, but there was a problem with coordination. I am still not pleased with the situation, as I am going to have to push things around. The port gets installed at a different hospital and I won’t have enough time to recover. I feel it added unnecessary stress to my hectic treatment schedule.
Now the part you are all wondering. My treatment. The treatment includes many things, but be prepared for unexpected expenses. Also there is a lot of hidden cost like your IVs back home or oral medications. Flight, transportation, room and board for accompanying person and so on.
- When needed access to doctors and nurses 24 hr
- 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.
- Dr. Douwes Mouth hygiene – Detox set
To be continued…..