After The Embryonic Stem Cell Storm: One Patient's Improvement List

I didn’t bring a “what got worse” list to my after-India doctor’s appointment. I have the blank page of no complaints in my purse.

I am settling into the newness of my body which feels virtually unrecognizable from before I left. I am shedding all fear without even trying. I think it’s a process that’s important to go through, in whatever time it happens. I’ve had a couple of not-so-great days that didn’t turn into not-so-great weeks and months like often used to happen. The day ends when the sun falls, I go to bed and restful sleep brings me a new start the next morning. A new start -- a concept I couldn’t grasp before I left for Delhi on December 9th.

It’s been three months since I last saw my Lyme doctor. My appointment with him Wednesday (I almost missed it thinking it was Friday). He was in awe. He asked a million questions. He tested my balance to the extreme. Not only did I have to walk in a line, close my eyes to make sure I didn’t trip, etc. When I was standing still with my eyes closed, he tried to throw off my balance by firmly tapping at each shoulder and my back. I stood tall (or as tall as one can at less than 5 feet tall) like an iron pole. I feel like nothing can ever take me down again. I passed the test -- with flying colors. He even told me my balance was better than a lot of normal people’s balance. No “thank you” could ever repay someone for that kind of compliment even if it was simply the truth. For the first time since I started seeing him, he is saying “yes” to letting me take a decent break from my overbearing antibiotics. I’ve never been well enough for him to feel comfortable that the disease was under control to the point where it didn’t need constant suppression. I just put all the pharmacy bottles in the dresser. Their absence is another blessing so unexpected. I have a follow up appointment in a few weeks for re-evaluation.

The embryonic stem cell inquires keep rolling in. I’m happy to answer questions. Some are silly and some are stumping me. Do they have toilet paper there? Exactly how many stem cells are in each shot? How many reach the injured site in the body? Are you sure you can’t get beef ANYWHERE in India?? To these things I say…..yes for toilet paper, I don’t know exactly how many in each stem cell shot (each person’s dose is different), about half of each dose of cells reaches the site (as a guess; there is no way of knowing yet), and for the beef lovers….sorry, but you must learn to eat mutton.

I’ve been asked one particular question many times: What if it’s a placebo effect? I have two answers. First, I wouldn’t care. Whatever helped bring my body back to this place is good for me. Second, it seems impossible to me. I’ve been through treatments galore, investing the same energy and hope into each one as I had for the embryonic stem cell treatments. I make things happen. If my brain could have tricked me into making a treatment work in the U.S. that didn’t cost more than I could afford, trust me, it would have. But alas, so many attempts didn’t budge even a single symptom.

I am a firm believer in embryonic stem cells and their ability. I know my fighting spirit and inner patience coax their growth, but it is them that triggered this miracle I feel today. Maybe for scientists, there is not enough proof or so much political ruckus that they cannot see clearly. But for someone who lived life through the pain of every moment, it’s more than I could ever ask for.

Here is my “what got better” list in no particular order. I will be most proud when I have a “what stayed great” list as time marches on. My Aunt wants me to frame my list of no complaints. Aunt Ruth, I’m holding off for now until I find the perfect double frame where both pages can fit.

I am sure there are things on the list I have forgotten about, probably for the best. Some symptoms are ones that if never remembered again, it would still be too soon.

• Normal walking balance (no more tripping, falling off curbs or bumping into objects)
• Stable standing with eyes closed (Romberg test)
• Body aches near absent
• Muscle soreness gone
• Joint pain only occurring occasionally but eases with rest
• Tremors in hands improved
• Muscle strength improved
• Vision much sharper
• No black floaters disturbing vision
• Jaw pain gone
• Headaches gone
• Stabbing pain in muscles gone
• Bone pain gone
• Muscles more relaxed (upper body used to be tense all the time)
• Skin hypersensitivity better
• No muscle twitches
• Pain and stiffness in neck better
• Less fatigue
• Dairy allergies greatly improved (yay for ice cream!)
• Menstrual cycles improved (despite history of endometriosis, cysts, etc.)
• Brain lesions improved
• Thyroid levels have returned to normal
• No pain medication
• No sleeping medication
• No heart palpitation medication

This period of my life feels like the calm you wait for when everything is spinning in an out of control whirlwind. Sometimes I sit looking around, wondering what's next. The world is wide open. I can see so far ahead, and yet not anything at all. I'm happily wading in this place, napping, eating and writing. I can only imagine the hunger that will prevail without the constant heaviness of my antibiotics.

I've felt a strong pull to visit the beach lately, even if it's just for five minutes. Everything seems vivid now. I plop on the sand and wiggle my toes. They don't hurt. I get up when I want to -- with no help. I take pictures from every angle because I have the energy. Sometimes I stay for the sunset because nothing keeps me from doing it. There are no pills or antibiotic injections waiting for my impeccable timing to ensure even dosage through the day. I have gotten to ditch the sick clock. It's my time now. Finally, mine.

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About Amy B. Scher

A passionate author, pioneering patient, and sassy spirit with just enough sweetness to get me by, I live by my self-created motto: when life kicks your ass, kick back.Amy B. Scher's profile Amy B. Scher's blog