Stem Cell Treatment?? Ehh, I don’t know…

Two months ago my mom came to me with this crazy suggestion.

Stem cell treatment for Lyme Disease.

My thoughts on this matter were:
”Uhm…WHAT??”
“I don’t want to use something from an embryo!”
“It’s not completely legal in the US, do I really want to do something that the FDA has not approved yet?”

Needless to say, I was not about this stem cell treatment thing at all. I was still set on my plan to visit one of the top doctors in the New England area and this was not something I felt I needed to budge on.

But……mom kept pushing.

She found out about stem cell treatment through another Bahamian who had been struggling with Lyme for 20 years and who passed it on to her children before she was properly diagnosed. She was going through an 8 week treatment program at a facility called Nutech Mediworld in India.

India??? Yeah. INDIA.

I thought that this sounded super sketchy. Mom spoke with the lady who told her all about the treatment, the doctor, the brain scans, etc. Mom was just so excited to hear about something that was actually working for someone, but I just wasn’t 100% convinced. Eight weeks is a long time; I would have to stop my life and so would my mom. I just had to look into this further. It was also a treatment that involved embryonic stem cell, which was not something I was totally comfortable with.

As I looked into Nutech Mediworld, I realized that Dr. Shroff, the founder, was not transparent. She finds no value in sharing her data and believes that all she needs in order to show the effectiveness of her treatment is her patients’ stories and not clinical trials and medical research. In finding out this information, I had to unfortunately tell my mom I was not interested in the treatment at this facility.

During my research though, I stumbled upon stem cell treatment at another facility called Infusio. This facility, originating in Germany, is two weeks long and uses stem cells they harvest from each patient. I didn’t even know that this was a thing! I started reading several blogs by patients who had been treated by Infusio and their doctors in Germany. Soon after, I realized they had opened a facility in Beverly Hills, California. They had a set protocol for Lyme Disease patients and they used fat stem cells. I contacted the facility and became a part of the Facebook group where I read more about people who were dealing with the same thing. I found out that a US citizen or resident had to go to the facility in California for liability reasons, rather than the Germany facility.

I spoke to someone from the facility to find out more. I emailed her over the course of a few days and asked several questions. Unfortunately, I felt as though she was slightly condescending. Her daughter had been through treatment and she was about to go through treatment as well. Infusio had recently implemented a new administrative strategy where all of their professional consultants were either past or future patients. This setup didn’t sit well with me. All our conversations were through these consultants and never a doctor. On Infusio’s Facebook group there were often live videos with the founder where questions and concerns were addressed, but again I did not understand why I could not speak directly with a doctor.

As I continued to read more about stem cells,  I realized that fat stem cells were not necessarily the best at treating Lyme Disease and other similar disorders. The favored type of stem cells were in fact blood stem cells, something Infusio in Beverly Hills did not offer.

As time went on I had a few more red flags. Initially, I liked the fact that it was only two weeks, but found out that you get your stem cells the day before you leave and are pretty much on your own until your 100th day appointment, which was something I was not comfortable with. Then I found out that the doctor/founder of Infusio was technically not allowed to practice in the US, which in turn meant he was not the one following the treatment of the patients. Lastly, in order to be approved for treatment your medical records had to be reviewed by a committee, instead of a doctor or two.

Then something amazing happened. I had recently posted on one of Infusio’s group pages asking several questions when a fellow blogger reached out to me suggesting I look into another facility in Germany. Her blog was actually one of the blogs that talked about Infusio. She had gone through treatment in Germany in 2014 and has since been in remission. She explained to me that over the years Infusio had grown tremendously and had since lost their individualized touch. She went on to tell me about the doctor she was treated by at Infusio, Dr. Michael Wittstadt, who had left after its growth and opened up his own practice called Villa MediGrün. She believed that his facility may be more beneficial to me due to the nature of my questions and concerns. She explained that his practice was centered around individualized treatment for each person and that he himself was always available to answer questions. She recommended I join two Facebook groups. One of the groups had an area where Dr. Michael answered questions daily. The other was created by two women, Michele and Kristina, who had recently finished their treatment at Villa MediGrün. These two groups played a crucial role in my decision. They helped me learn more about the process itself as well as the treatment facility and Dr. Wittstadt. I really felt better about this treatment facility as a whole.

I decided to contact Dr. Wittstadt and inform him of my condition and that I was interested in treatment. He replied within 24 hours letting me know that their office had closed for a few weeks for summer holiday, but that he would be more than happy to have a Skype chat with me as soon as they reopened and that is exactly what happened.

Dr. Michael, as soon as he returned, took 1 hour out of his day to talk to me and my mom.

He explained that he did not have a set Lyme disease protocol but instead had “Abby” protocol, which meant that he tailored every patient’s treatment to their needs based on their body and results of tests. In order to do this he made sure to only treat 4-5 patients each treatment cycle. His thought process behind this was he wanted to make sure he was the one watching each patient closely, tweaking things as time went on. Another benefit to his treatment was that it was three weeks, meaning that once you received your stem cells at the end of week two, the third week was all about building your system back up while making sure your body responds in the correct way. To top it all off he arranged weekly Skype calls with each of his patients for the first 100 days after treatment to ensure any questions or concerns would be answered and to monitor their progress as time went on. This was awesome!!! After speaking to Dr. Wittstadt I realized that this was the place for me. My Mom, Dad, Tyler and I spoke at length about the treatment and course of the disease as and together decided that this treatment would be a step in the right direction. 

 

Dr. Wittstadt made me feel comfortable and has continued to make me feel more comfortable throughout the time leading up to my treatment. He is constantly answering my questions, which, for anyone who knows me, is at least once a day.

During our consultation Dr. Wittstadt mentioned three things he felt made the stem cell treatment more effective in the long run. They included a course of thymus treatment (10 shots), having the C1 and C2 parts of my spine minimally adjusted by an atlas orthogonal chiropractor, and lastly seeing a biological dentist to have any metal removed from my mouth. I had not had any cavities in the past, which therefore meant I had no metal in my mouth and decided that seeing the dentist was probably not needed. Since my consultation, I have started seeing a nearby atlas orthogonal chiropractor in Portsmouth, New Hampshire and I have had my first thymus injection. I am gradually seeing improvement with the chiropractor and unfortunately the thymus shots hurt like a B****!!!

My intention, in the midst of all of this, was to stay in school. I was going to try and attend my online classes while in Germany even though Dr. Micheal suggested I take a break. He explained that for the treatment to be effective a person has to be under the least amount of stress possible. Although I considered what he was trying to say, taking a break would completely change my entire plan to get married after I graduate.

A week or so after the Skype conference with Dr. Michael, while laying in bed, I began to think about what I would be taking on. Wedding planning, school, the treatment, transitioning to a paleo diet, etc and realized that the list was just too long. Despite me not wanting to take a break, I knew deep down that I had to.

I realized that I would not be able to maintain my 4.0 cumulative GPA if I tried to manage all of this at once. I realized that my health would continue to deteriorate if I was constantly putting myself under this kind of pressure.

It was time I put my health first for once.

This was one of the hardest decisions I had to make. Thankfully, my advisors at Simmons College (the MSW program I am in) made fixing my schedule easy. They helped me work out a plan that would still allow Tyler and I to get married in September 2018 and go on our honeymoon.

I will continue to write more about my treatment while in Germany. My mom, Tyler, and I will embark on this unconventional adventure October 14th and I will start my treatment October 16th, just a few days shy of my 23rd birthday. Although the success rate does not sit at 100%, it has a higher success rate than most traditional US treatment modalities and because of this I am hopeful.

I will write again soon. Wish me luck!

-Abby