Almost Dying for a Cure

They ferried us away in an unmarked van to avoid controversy, the driver reassuring us that crossing over the Mexican border was easiest at this 6 AM hour. One couple, a stylish woman and her equally stylish husband, had done this journey before. The older woman in the backseat, obviously a first timer like us, emanated the same uneasy determination as my husband Lou and I. We were all headed to Tijuana, a place where the American FDA cannot stop people from receiving stem cell injections in the hopes of ameliorating or reversing major medical conditions, including Parkinson’s, cancer, multiple sclerosis, cystic fibrosis, and my currently incurable neuromuscular condition, FSH muscular dystrophy. Every passenger, now silent in thought, was banking on hopeful results, (and for goodwill sake, I will include the driver as it better ensures future business). A weak morning sun broke quietly as the van slowed for armed border control.

It would all be over in a matter of hours.

Desperately seeking a solution

There’s a fine line between investing in a potential cure and a colossal waste of money, time and emotion. Before we crossed the border into Mexico, Lou and I had done due diligence. A battery of Portland’s top neurologists uniformly told us that there was nothing that they could do, that “muscular dystrophy is a crummy disease,” that “it’s only going to get worse,” and “oh yeah, here’s your bill for $600.” So we did what others who don’t take no for an answer would do: scrounge online for hope, anything, something.

The more I read about going to Tijuana or Thailand and spending roughly the cost of a shiny, new SUV on injecting a foreign substance into my body that may or may not work, the more I reckoned, no. Hell no!

Months passed. My condition worsened.

Then along came an intriguing new documentary called The God Cells (2016). People young and old were filmed traveling over the border to Mexico, receiving stem cell injections for a variety of neurological and immunological ailments, including muscular dystrophy, and doing much better. Many of those interviewed were going through the same Southern Californian-based company that I blew off months prior: Stem Cell of America. Holy crap.

Within a week, I booked in. Hope trumped my primary neurologist’s (expected) disapproval, a cautionary inquiry from the bank before transferring funds and my own lingering apprehension. I had nothing to lose.

Injected

Other vans met us at the clinic, empting out people in wheelchairs, children with disease lovingly attended by their parents, non-disabled people for whatever ailed them (some just for anti-aging, the vanity of which I have very little patience for), and me. The procedure itself was just as the movie depicted, and relatively painless: one needle for an IV drip injection; another four needles into the belly. Some rest, back into the van, and then wait and see for signs of improvement.

Did the stem cell injections help? It’s hard to tell. I felt about a 10% improvement within the first month but that’s about it, and that seem to wear off after about three months. The company’s nurse recommended a second visit a year later at a reduced rate (roughly the cost of an used SUV). It was on that second visit that we ascertained from other patients – not the company itself, presumably for legal reasons – that repeat visits are key. One couple had been bringing their daughter with SMA muscular dystrophy for 10 years. Another man with FSH muscular dystrophy said he went yearly. Needless to say perhaps, this stem cell therapy was not covered by insurance, and won’t be anytime soon; government officials continue to hold back USA-based research and development, infuriatingly so.

So, I considered, money aside, was it worth being injected with stem cells for a subtle three month boost? A tricky question that each person needs to answer based on his or her circumstances, convictions, and willingness to accept the consequences. For me, there just wasn’t enough one-size fits all miracle cure for the buck. I canceled the third appointment and the company issued my refund. I was moving on to other treatments, including two that would almost do me in.

Dial 9-1-1

In 2015, my birthday fell on Thanksgiving day, just as it did the day I was born. The following day I almost joined my mother who died on a Thanksgiving day 27 years prior.

In an effort to try all available resources, my naturopath at the time suggested injections of ALA (Alpha Lipoic Acid) and glutathione, substances that are injected intravenously with reported benefits for individuals with autoimmune disorders. My acupuncturist concurred with the naturopath who worked as a team on my behalf at the clinic. Theoretically, it made (some) sense, so it was worth a shot (no pun intended).

Ten minutes into the injections, everything was hunky-dory. The practitioner and I chatted away. Hope hovered in the space between us. The next ten minutes would unfold as a totally different story.

I sneezed once. Then twice. Then in a longer series. Kleenex was politely dispensed.

“Is this sneezing normal?” I asked.

My eyes started to itch. Something was happening. Panic set in, labored breathing followed.

Anaphylactic shock requires a functional EpiPen to avoid catastrophic consequences, including the possibility of death. When I told the practitioner I couldn’t see anymore, she administered an EpiPen into my thigh.

It malfunctioned. I repeat, it didn’t work.

She ran to the next room and sought help from my naturopath. Once they were together in the room, they attempted injecting another EpiPen. No luck.

“Figure it out, ladies. Figure it out,” I exclaimed.

As the minutes passed, I urged them to call 9-1-1. From down the hallway I could hear a professional urgency in the receptionist’s voice as she called for paramedics.

“Tell my husband I love him,” I instructed over and over. Everything was dark, and it was harder to breathe. This is it, I thought, resigning to my fate.

The women decided to put the pen’s epinephrine content into a regular needle injector.

“Now jab it into her thigh – hard,” I heard my naturopath say. (I assure you that the other practitioner follows directions very well and, my guess, is a Quinten Tarantino fan.)

Well, that didn’t go so well

During the ambulance ride and throughout the ER attendants’ fast and furious magic, I repeatedly mumbled, “My thigh really, really hurts (dang, how many times had that woman watched Pulp Fiction?!).

An ER nurse replied, “Lady, we have bigger things to worry about than your thigh right now,“ while frantically palpating to find a vein that would take the needle. Well, that shut me up, and I went back to imagining my practitioner binge-watching Quinten Tarantino films, my thigh throbbing.

My body recalibrated. I could see again and what I first saw was my husband’s concerned expression, a unique concoction of utter love, anger, distress and impatience because he felt he could not help me more. For a construction manager of 38 years, a man who can build or fix anything, this was tough stuff. (And you will no doubt hear from my amazing husband-caregiver warrior on this subject in one of his upcoming posts.)

My eyes had swelled to the size of ping-pong balls (not my best look) and I would remain on prednisone for a couple more days.

I was back to square one, again, and most definitely in the market for a new holistic health clinic.

Spoiler alert: I will live to tell this story

Hyperbaric oxygen therapy has been scientifically proven to help neurological conditions such as multiple sclerosis, stroke, autism and traumatic brain injury. A patient, (yes, including me) is put into a sealed chamber for roughly an hour where pressurized oxygen stimulates the production of ATP to regenerate and strengthen damaged nerves and muscles while simultaneously working to balance the body’s autonomic nervous system, (the mechanism that naturally seesaws between a healing, restful state [parasympathetic] and the fight-or-flight response [sympathetic]).

Advancing muscular dystrophy commonly triggers stress disorders, e.g. anxiety, depression, etc., often putting the sympathetic nervous system in overdrive. Once again, I was hoping this treatment would help my off-label condition, meaning although muscular dystrophy is rarely specified as treatable by hyperbaric oxygen therapy, that doesn’t mean it won’t be helpful in mitigating symptoms.

Although emotionally difficult, I must write this segment to the end, if only as a warning to the one person out there with FSH muscular dystrophy reading these words and thinking of doing this treatment. To all others, my experience with hyperbaric oxygen therapy may be viewed as courageous or stupid in the extreme. Or both. Because it just about did me in.

When undergoing hyperbaric oxygen therapy, the standard protocol for any neurological condition advanced as mine is 40 sessions, preferably at a minimum of four times a week. With each session I would become very calm afterwards for about three hours, then spike upwards to a level of anxiety that I don’t ever want to experience again. My autonomic nervous system was jagging, radically.

The operators and coordinating doctor could not have been more supportive; they assured me that everything I was experiencing was normal, including the extreme tiredness. That I would improve, that I would get stronger.

Bullshit.

I basically spent the 40 treatments, one precious summer, in bed, crying and listening to audiobooks and podcasts on meditation, anything to distract my mind from life-threatening thoughts that only made me more anxious. I was tired. So tired. This treatment felt like death by autonomic nervous system roller coaster.

For months afterwards I felt like I was shutting down. My last attempt at a possible cure was spent. I didn’t want to be here anymore. And that, my friends, was the most dangerous state of them all: confusing severe depression with compassionately wanting to slide into perpetual peace.

Less is more

As I gaze out the window at a sunny Arizona landscape, doves cooing, magenta bougainvillea in full technicolor blossom, I still have one thing to say to that one person with FSH reading this post and contemplating any of the above treatments for muscular dystrophy. That is this: what didn’t work for me, may work for you, and I pray that it does. Although research studies into how these treatments can or cannot help others are woefully slow and underfunded, they are working wonders for some people. But do take my experiences into consideration when making your decisions. To others reading this entry, I’m here to tell you that I haven’t given up on living life with passion and productivity, oh no, not quite yet.

After about four months my energy improved again. I am much more emotionally settled with antidepressants, and Lou and I have decided to travel where and when we can, including wintering south.

I don’t have any regrets for undergoing any of these treatments, not one. And the more that people voice the extreme lengths and costs at which they are willing to invest in needed cures, the more donors, pharmaceutical companies and government officials are likely to invest in researching and developing them.  As far as I am concerned, the ball is in their court now (“Figure it out, FDA. Figure it out.”). I tried.

In the meantime, I’m sticking to what works best for my mind-body connection:

good, neurological physical and occupational therapy, which includes assisted yoga (not covered by insurance), therapeutic massage (not covered by insurance), Chinese medicine (ditto), and dedicating myself to the purpose of telling my story, which hopefully encourages others with rare diseases to do the same.

Oh, and to the doctors who offer no hope, to the organizations promoting potential cures for the yet incurable, to the well intended advocates of gluten-free, anti-inflammatory dietary restrictions, I say, no more. I have things to do and places to see on my red scooter. And after my ride, I will eat a big, gooey slice of chocolate cake if I damn well feel like it. I consciously choose to do only what brings me joy, ignites a smile on my husband’s handsome as all-get-out face, and advocates a better quality of life for everyone.

And do you know what? I am doing so much better.

Along this series of trials and errors I have rediscovered my soul’s purpose. Sure, I still have my days, but after almost dying for a cure, I now awake with thoughts of living a full day and loving as much as I can – the sign of a real miracle cure for anyone.

 

One thought on “Almost Dying for a Cure

  1. Claire it was an honor to meet you and Lou this year at Encore. Reading many of your posts including “Dying for a Cure” Is an inspiration, for those suffering with Life Long illnesses and an awareness of all that needs to be done to make accessibility for all dealing with handicaps. Your experience with hyperbolic I think might of been different if you could have done it in a multi chamber in Scottsdale. The fact that you have found peace with your condition and our living life to satisfy yourself and Lou must be very satisfying. I hope we will see you when you come next year to Cache to rent. Wishing you a good year. Jayne Miller

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