Updated: Nov 17, 2019
"Do you have any other questions?" she asked. It had been a long but quick hour with my Lyme disease doctor on this cool, gray day. And I was hoping that it was a day that would change my life.
"Actually, I do have one more question," I responded.
"If you were in my shoes, is there anything else you would be asking about or doing?"
I recommend you file this question for use anytime you need to consult with a specialist of any sort. You may even get an honest response, as I did.
"Yes, there is," she immediately responded. My adrenaline began to canter then gallop; I felt like I had as a kid fishing when the calm of the water's surface was broken by a fish's violent lunge at the bait...I was about to land the Big One. I was about to uncover something hidden and special. The question I'd asked was about to change my life. I hoped.
It had been a few years since that first symptom in the Summer of 2014-- the ever-so-slight hesitation in my right leg in that workout at Wellesley College. Several doctor visits and a few broken bones later, I first heard the words "Early Onset Parkinson's Disease," though I didn't yet know those words didn't actually apply to me. [See "Excerpts From a Changed World"]. The diagnosis changed costumes several times, each one more or less believable, if not conceivable. I, of course, was searching and hoping for the most innocuous of explanations, but tried to prepare myself for the worst of such.
Like a ghost in the night, Lyme disease is hard to pin down, impersonating a plethora of illnesses and diseases. I had previously tested negative for Lyme, but as I learned more about the vastness of unknowns in the universe of neurological disorders, I became more aware of possible diagnoses. I talked to a lot of people-- not just doctors, family and friends, but also friends of friends, acquaintances, strangers-- anyone who would listen. Maybe they knew something that could help? Someone who could help? Maybe they knew of some little-known nugget that could lead down a path of a cure, or at least an accurate diagnosis.
So on that day at Alexa's field hockey game, I ran into a friend and told my story. She listened, and had a story of her own to tell. It was one of her friend's daughter, and of their struggle to find the right diagnosis. They pushed and persevered through dead-end after dead-end, showing courage and grace at every turn as the girl's struggles continued. My friend offered to connect me with the girl's mother. I accepted, which is how I came to be in the Lyme disease doctor's office that day.
She was a specialist in integrative medicine, and treats a litany of modern day diseases, including Lyme. I learned that not all tests for Lyme disease are the same; some are more accurate than others. She sent my blood sample to a highly regarded test facility on the west coast, and to my shock, I tested positive for "exposure" to Lyme sometime in the past-- we didn't know when. I began a regimen of antibiotics and natural healing solutions. It was the only way to determine whether or not Lyme was responsible for any or all of my symptoms; try it, and see if any of my symptoms relented. They didn't. In fact, the pill parade caused me a great deal of trouble. And so it came to pass that I arrived at my question in one of our final appointments;
"...If you were in my shoes, is there anything else you would be asking about or doing?"
Cape Cod. That's where her answer led me-- to a doctor who administers Amniotic Membrane Infusion; i.e., stem cell infusion.
["...Stem cells are the body's raw materials — cells from which all other cells with specialized functions are generated. Under the right conditions in the body or a laboratory, stem cells divide to form more cells called daughter cells. These daughter cells either become new stem cells (self-renewal) or become specialized cells (differentiation) with a more specific function, such as blood cells, brain cells, heart muscle cells or bone cells. No other cell in the body has the natural ability to generate new cell types...Stem cells can be guided into becoming specific cells that can be used to regenerate and repair diseased or damaged tissues in people..." Mayo Clinic, 2019]
January 16th, 2018, 10:30 a.m.
Kim, hope, and I waited in a sterile exam room, like kids waiting for Santa but with some trepidation. A knock on the door; he entered. His eyebrows were bushy and wavy and thick. I remember being mesmerized by his answers to our questions. We had done our homework and were well-prepared to get him talking, and then listen. He was kind, believable and authentic. He spoke in facts, and made no promises-- over 2 years, 50 patients treated with amniotic membrane infusion, 41 cured or with marked improvement. From our notes:
"...some patients who were in wheelchairs can now walk, some still may use a cane if they were in a wheelchair. He administers the amniotic cells in a medium of 20% manitol and saline, glutathione and B12. He believes this "cell solution" makes the amniotic cells 90-95% viable when he administers them. The manitol (a complex sugar) is used to alter the blood brain permability and increases cerebral blood flow. The infusion takes 15 minutes. Risks are next to none..."
I wanted to consult with my team, of course, and there was more research to be done. But I was pretty sure at that point. Kim's notes from the meeting closed with:
"...Hard to describe the intensity of this meeting with this exceptionally bright and engaging man. We both really liked him and felt he was genuine, warm, very open and honest. He had these crazy eyebrows and bright blue eyes--kind of reminded me of a very friendly, passionate, genius scientist (think Willy Wonka!)..."
And my response:
"...not much to add other than he was very transparent and open...authentic solid. the success of his patients has been nothing short of remarkable, and the experience of the mtg is difficult to convey..."
There are mountain ranges of information and anecdotes on the use of stem cells being deployed for a broad range of health-related issues. My team and I did our best to sift through it and separate fact from fiction, an impossible feat in the Information Age and in our Attention Economy. Stem cell research and treatment is controversial. Some think that they can cause tumors; others say that they have the potential to cure chronic diseases. There is information to support a wide spectrum of hypotheses and arguments. It is research and experimental.
There was dissension among the team. While I can appreciate "healthy friction" in corporate decision making, it takes on another level of gravitas with health and love and risk as the underpinnings of the agenda. We talked. We discussed. We argued. I was short on kindness. I wanted support. I wanted full support. I tried my best to listen. We did more research; talked to more specialists. We discussed more and yes, we, or I should say "I" at least, argued more. In my mind, we had enough information for me to make my decision. I would do it as soon when my body was clean of the antibiotic cocktail I was on for Lyme.
Friday, June 1, 2018, 11:00 a.m.
On the drive to the Cape with my sister, Beth, I visualized. I tried to envision the new cells entering my blood stream, identifying and finding the damaged and dead cells in my brain, moving them aside and taking residence and growing anew...and then I slowly but surely start to regain my balance, my stride, my speech, my dexterity, my strength, my muscle...and on...I am cured. This was my vision. This was my hope. This was my dream.
And as I sat in a normal chair in a normal exam office, with Beth by my side and an IV in my left arm, it was happening. Again, I visualized as I stared at the drip-drip from the large, balloon-like bag, the clear liquid entering the narrow, tunnel-like tube that fed into my bloodstream--the delivery vehicle. It was a lot of fluid, and in 15 minutes, it was empty. "Now...the magic," I thought to myself...
If the amniotic membranes were going to help me, I would see improvement in 1-3 months. If it was meant to be, it would be. That was my approach; think that it was going to work, but be ready if it didn't. The days came and went. The weeks came and went. And the months came. And the months...went. But I still had hope-- maybe with me it would take several months, I thought, or even a year for the stem cells to work their magic. I remained steadfast in patience and hope.
Here I am, almost 18 months later, writing and reflecting on my trial with stem cell. It hasn't worked.
Yet. Maybe it will...
You. Never. Know.
Can you see the "just maybe" of hope in this shot 5 minutes post-infusion?