My name is Emily, but I prefer to be called by my nickname “M”
Why am I going bananas? Good question!
After years of unexplained, painful health issues, I was diagnosed with late stage Lyme Disease, Epstein-Barr virus (aka mono), and two co-infections, Babesia and Bartonella. I have many ailments that persist in my body on a constant basis. Some of which make me feel like I’m “going bananas.”
The word “bananas” has multiple meanings for me. Let’s break down why I’m “going bananas” to a few definitions.
- Bananas: a delicious fruit found in the tropics. One I’ve become allergic to and can no longer eat without getting a negative reaction. Sad, I know. I lost a healthy, easy way of getting potassium, and it’s my favorite fruit flavored bread. Say that ten times fast!
- Bananas: losing ones mind. That’s exactly what Lyme does to your brain. The Lyme community calls it brain fog. I call it….actually, I forgot what I’ve called it. Annoying is what it is! Short term and long-term memory is affected. I have difficulty holding a conversation without getting distracted. Oh look a squirrel! I can’t have a normal conversation without sounding like Yoda. Trying to sound articulate is non-existent. Thank goodness for grammar and spell check!
- Bananas: to act crazy in a playful manner. I’d love to act crazy. I’ve always felt held back by some invisible force. Lyme Disease!
I hope this satisfies your curiosity about me going bananas. If not, refer to the second explanation. Oh look a squirrel!
A little bit more about me. I am single, athletic, work too hard, like long walks on the beach, and an occasional good beer.
Okay seriously. I am single, I do love a good beer, I work retail which has been a battle in its own while living with Lyme, and I do like the outdoors, especially hiking and camping. I am also very creative and love DIY things. But I’m getting off track.
I never got the classic bulls eye rash, so pinpointing when I got bit by the tick is difficult. Based upon my health history, I can narrow it down to when I was about 11 or 12 years old, so I’ve been dealing with this for over 20 years.
When I was a kid, before Lyme, I loved to run. And I was good at it. I didn’t know it then, but due to Lyme, my joints have always bothered me and prevented me from enjoying a nice run. I miss it dearly.
Along with the joint pain, I have been plagued with many food allergies, yes from Lyme. I miss eating citrus, melons, kiwi, walnuts, bananas, and my favorite avocados. Living in California avocados are on every menu, taunting me. We even sell an avocado dog toy at work! I used to share a whole avocado with my mother every now and then. It was something we both enjoyed and considered it one of the few things we had in common.
Another thing I miss is my brain. I have always had trouble concentrating, speaking clearly, memory…and other things that I’ve forgotten. Those things most people take for granted. I just want my brain to work normally! I can’t remember the last time I felt smart. Sometimes I feel like the Scarecrow, “If I only had a brain.”
Finally, the thing I will love to have back is energy. I work full-time, and when I have a day off, I sleep. Not just a few extra hours, I sleep all day, and I’m still tired. I literally have no stamina. I want energy to explore and do things regular 30 something year olds like me do. I am afflicted by many aliments that prevent me from living life to its fullest.
Neuropathy is a recent, painful, and unforgiving symptom. Usually, it’s a side effect from diabetes, or cancer treatments, but because of Lyme, my nerves are either over or under active. There is no medication to help because they compromise the medications I take for Lyme.
As my life with late stage Lyme continues, and if I’m not able to get my immune system to work properly, more symptoms can appear and could possibly bring one that will end my life. Yes, in addition to daily pain and mental symptoms, complications from Lyme can cause death.
I would love to have energy like most people in their 30’s, no joint pain, no food allergies, and my mind…its hard to imagine what that would be like, but I want it. I want to have a life without chronic illness. I am tired of hiding my pain and acting like I am healthy when I am not.
My sister-in-law also had late stage Lyme disease and Babesia. She recently tried a unique and promising treatment. She had thymus and autologous stem cell therapy in Germany. It seems extreme, but when you live with almost constant pain and symptoms for as long as we have you become open to trying treatments that aren’t common in the U.S. So far, she’s feeling better than she has in several years.
Thankfully, the process is not invasive and relatively simple. Thymus and stem cell therapy have been treatments used in Germany for years. They have been used to treat various illnesses like MS, lupus, and cancer.
Unfortunately, all treatments for Lyme here in the U.S. or abroad are expensive and controversial. There has been very little research on how to effectively help people fully recover. Many people stay on antibiotics or herbal remedies for years with little improvement. Most protocols are similar to chemotherapy and often involve medications administered via IV.
The biggest challenge keeping me from getting the treatment in Germany is the cost. The average cost is $25,000.
Yikes, that’s a lot of moo-lah!
Even if I continue treatment with my Lyme doctor here in the U.S., my treatment is very expensive. My health insurance doesn’t cover any doctor visits, lab tests, and only a small percentage of my prescriptions are covered. In addition, I need to take several expensive supplements, and herbal remedies.
I currently spend about $12,000 a year on my treatment. The average treatment time for late stage Lyme, and co-infections is three years. I’ve been in treatment for one year, so that means I’ll be spending at least $24,000 over the next two years.
I know what you’re thinking. “Why don’t you do stem cell treatment here in the U.S.?”
In the U.S., autologous stem cell therapy is very new, and at this time, it’s not offered by any clinic here. The thymus and stem cell clinic in Germany is experienced and well-respected.
Please help me live a normal, healthy life again.
Help me raise money to get the proper treatment for late stage Lyme.
I want to once again frolic through the poppies towards the Emerald City… (wait I think that’s in a movie somewhere.) It sounds happy and fun. That’s all I want to be, happy.
I promise if I get the treatment and become symptom free, I will frolic through the poppies.
Thank you for listening to my story.
Hello! It’s Jen, M’s sister in law here….
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THANK YOU for helping M!