The Stem Cell Story Continues

My baby stem cells are just over five months old. Sometimes, I can't believe it's been that long since my first injection, as I sat anxiously on my favorite brown blanket sprawled over my hospital bed. It feels like I went from sick, to India, to better, to home. And it all happened almost in a blink compared to what I had been through previously.

My fourth follow-up appointment at the beginning of May with my Lyme doctor left us both saying, "Now what?" There is no protocol (as of now) for a post stem cell Lyme patient. It's been a guessing game on how to keep me healthy while giving up some of the over protectiveness we usually have. I feel often like I am blind-folded, feeling my way in the right direction.

I almost finished my month long round of antibiotic shots to help with the maintenance of whatever Lyme bacteria might be left lingering deep in my body. Truly, I have felt absolutely Lyme free for months. I thought of the antibiotics as a precaution. But my bleeding, bruised and scar tissue laden butt put an end to the shots several days shy of the four week mark, and a bit abruptly. Because I did six months worth of this medication last year, it felt like a spider web of scar tissue inside my muscles, and I was always on a scavenger hunt for a spot large enough to insert the needle. Can you say O-U-C-H??? One night, as I searched my black and blue butt cheek for a place without a lump of scar tissue, I looked in the mirror and said, "Enough." And that was it. The saga ended and the bag of needles that makes me look like a heroine junkie got tucked far away at the back of my closet.

A few weeks ago, a cold proved to me I am still not invincible (despite my best attempts). It’s been three weeks and although my cold is completely gone, the rest of me has this not-so-wonderful feeling that wasn’t present before it came into my life. I overcame the cold with superstar speed, especially compared to what it would normally take me to recover. But what remains is this.....feeling that I can't quite place. My cough is gone. I'm not sniffling or sneezing. My nose isn't running. Still, I don't feel as well as I did before. Some of my joints don't feel as free. My neck is a bit stiff. I have a little less pep in my step. It’s hard to explain because these little things hardly seem measurable compared to how I used to be -- but the feeling is there. Not constantly, but enough. I am less than thrilled and trying not to panic. The biggest trigger for a Lyme patient’s relapse is something like a cold or other trauma to the system (and it doesn’t take much). I just refuse to be part of that statistic.

Following my cold, I decided to start using my infrared sauna again. And then last week, I had my first really "bad" day since I can remember (pre baby stem cells). I ached, my head hurt, my joints and muscles were sore....and I’m starting to wonder if it was partly my fault. I am the gung-ho girl. Give me a chance to do something too eagerly and I will not disappoint. My new body is my vessel and I still forget to be kind and gentle sometimes.

My infrared sauna was a savior in so many ways during my Lyme life as it helped me rid my body of toxins that are especially common in those with Lyme Disease. I should note here that totally healthy people use this type of sauna too. They promote a healthy immune system, cleanse the body of environmental toxins, improve cardiovascular health, help to heal and stimulate tissue, etc. It’s the one thing I recommend to other patients. Because Lyme patients are believed not only to have one disease, but a "complex," the sauna can be an integral part of treatment. The reason many physicians feel there is a “complex,” is that once a body becomes infiltrated with the Lyme bacteria, it can malfunction completely sending the immune system and many organs into chaos. Nothing is safe. The body is susceptible to many other infections, viruses, complications like yeast and mold, toxins from the environment and the list goes on. I experienced this first hand, when a couple of years ago, a toxicologist discovered high levels of benzene and formaldehyde in my system (it still puzzles me to this day). Even if I was exposed only to small amounts, my body couldn't have cleared it properly which would allow it to dangerously accumulate. Last year, I also had mercury levels indicative of me drinking from a light bulb (okay, maybe not that bad, but it registered off the laboratory charts). The levels were so high for the same reasons the other chemicals were present.

I knew the sauna would help my body rid itself of the antibiotic residue left from the medicine I'd been dumping in during my 30-day maintenance dose, and possibly help with whatever yuckiness the lingering cold symptoms left. But, alas, I didn't just "try" it. The gung-ho girl went full force into the heated portable sauna for way too long two nights in a row. Silly, silly me.

So, between my body fighting the cold and the re-acclimation to the sauna, I’ve had to “take it easy” a bit more than I’d ever hoped to have to again. I’m still very free of painkillers, tremor medication, sleeping medication (and blah blah blah). But even having to slow down, has at moments, caused waves of fear to flood me.

Dr. Ashish told me at one point that I may have some ups and downs before my body finally hits its plateau of health. Maybe I'm experiencing that? It's also said that people re-trace through their original symptoms one last time during the healing process before they never have them again. Perhaps this is an explanation? It's all still unknown right now. And so, my journey continues....

July is the month Dr. Geeta Shroff wanted me to return to India for a booster series of stem cells. Before this week, I really didn’t feel ready. Now, I do. I successfully survived several months straight with no antibiotics and perhaps my immune system, after years and years of being overburdened, could use some more help in rebuilding itself. The severe pain my body was in disappeared with my last trip, but that doesn’t mean that in that time, all the serious damage to my joints, nervous system and other problem areas were completely resolved. I didn't get sick overnight and I can't expect total regeneration to happen that way either.

I still feel amazing and full of hope, but now with a little tug to remind me I may not be quite “there” (invincible) yet. That's okay with me. I'm in this one for the long haul.

I thank the Universe every day that Dr. Geeta Shroff and her stem cells are there to help me keep paving the way. Tonight I will start searching for plane tickets. Soon, I will download music to entertain me for the 20-plus hour plane ride to Delhi (sigh). I will start hoarding food in my empty suitcase, and prepare myself mentally for the sweltering hot, crowded, dusty city. I will be there for two or three weeks and in that time, I will add to the building blocks that have allowed my health to so magically re-emerge.

For now, I will march on with the empowering torch of perseverance within me, while I inspire others with a magnitude so strong, I am in constant awe. The e-mails from patients around the world suffering various diseases continue to roll in as I share my story. I tell it with excitement, sometimes wishing I knew what was to come next. I suppose that's part of the glory of life. The journey has its twists and turns, but always, there is a reason for everything buried somewhere in it. It reveals itself only when the timing is just right.

I can't wait to see what this next chapter of my journey holds (aside from weather that resembles the desert on its very worst day). Watch out Delhi, here I come!

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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