As of my last blog post, I was just starting on an adventure, and a rarity for ME/CFS (chronic fatigue syndrome) patients, a cross country trip. The journey started really in July of 2014, when I pulled myself out of my bed in Boston, and with the help of ubiquinol (an antioxidant used to help improve energy production at the cellular level, particularly effective for mitochondrial disease patients) and coffee, got myself into a taxi, into a plane, traveling across the country to Mount Shasta, California. Within two weeks, I went from 90% bed bound, to short walks, and driving my own car again. My health improved so quickly, that I drove back cross country, with a car full of things to be used for a more active life in Boston.
I can still recall the shift, when I crossed the border into Ohio. Suddenly my body started to revert to the debilitating fatigue, pain, it had experienced when I was bed bound in Boston. Within a few days of returning to Boston, I was becoming less and less functional, although somehow my body seemed to hold on a bit to the benefits of the time in Northern California.
That experience, of the rapid improvement, the sudden relapse, and the subtle sensation of something changing when I crossed the Ohio border, opened my mind to the possibility that environmental factors might be a factor in my illness. The puzzle pieces started to fit together. Namely, the severe mold allergy that had been diagnosed in June, and another doctor's diagnosis of mitochondrial myopathy in August, shortly after my return to Boston from California. The doctors themselves hadn't put the pieces together. The physician who diagnosed me with mitochondrial disease, i.e. failure of energy production in the cells of my body, had assumed that the source of the damage to the mitochondria had been a viral infection. But the experience in Shasta compelled me to look for a connection. In a search on Google Scholar (one which I've never been able to precisely replicate), I found a definite link between mycotoxins and mitochondrial damage. Then, searching for clinical applications, I found the work of Dr. Ritchie Shoemaker, and eventually the evidence put together by Lisa Petrison, that ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome for the un-initated) patients responded to locations, feeling nearly normal in some locations, even while they were severely debilitated in others.
This led eventually to my trip to Montana, having found that there was a doctor in Bozeman who had been trained by Dr. Shoemaker, and having read numerous patients reporting positive location effects in Missoula and Bozeman. Sadly for me, Missoula did not have a positive effect, but Bozeman did.
That month in Montana was full of lessons. If you are an ME/CFS patient who responds to changes in locations, and find yourself suddenly regressing to bed-bound status, get out of that environment, even if you have to crawl. Listen to your intuition. A tent from Target in a lonely campground, which you put up in the dark with only your car headlights to help you see, can in fact be a healthier environment than a nice hotel in Bozeman to which you were referred by a doctor who primarily treats victims of mold exposure. Cayotes and fresh air may actually be safer companions than a television in a hotel room in town. Two weeks of camping in various spots in Montana led to such an improvement in my health that I was able to hike with my parents for the first time in over five years. I was left with a formal diagnosis of CIRS (chronic inflammatory response syndrome), a condition which toxic mold in water-damaged buildings can induce, but can also be triggered by exposure to a variety of biotoxins. I was left with hope, and even a promise of full recovery in a year. 
Sadly, full recovery has not yet materialized, and I have come to realize that minimizing exposure to mold and other VOCs (volatile organic compounds), emitted both by mold and by chemicals used in household goods and building materials, is much easier said than done. I flew back to Boston at the end of October 2014, and spent several days looking for any apartment or apartment share, within 2-3 hours of Boston that I could tolerate, i.e. any space which wouldn't trigger either debilitating fatigue or asthmatic coughing, and which I could actually afford on disability income. I drove from Maine to Newport, Rhode Island, and found one place, an apartment share in Salisbury, Massachusetts, which my body could actually tolerate. Then after a week there, my physical health started to decline again. My vision began to black out, I started to lose my balance on stairs, and I found myself spending more and more of my day flat in bed. These symptoms only increased over time. Finally, a dear friend, also sensitive to mold, talked me thru leaving the apartment and spending the day on the beach (rather a daunting prospect in November in New England). But on that beach, in air I didn't react to, my energy started to improve, I was able to walk again, and my mind cleared sufficiently to realize that while I loved the history, the scenery, the heady intellectual atmosphere in Boston and New England, staying there would result in returning to bed-bound status, where I would be utterly unable to take advantage of the very things I loved about New England. 
So I hit the road again. Once again, with the help of chocolate, coffee, spicy V8 juice, ubiquinol, and hefty amounts of adrenaline, I survived a cross-country journey, with wind, snow, black ice, and some very questionable gluten-full pizza in Peru, Illinois. I made it to Bend, Oregon, in time for a family Thanksgiving, and with full intentions to spend a few days with my parents in western Oregon, and then head south.
A few rainy months later, I had sunk again to bed bound and housebound status. Desperately, I clung onto those memories of walks in Shasta, of hikes in Montana, and tried to find a way to achieve that again. At this point, I was utterly dependent on my parents, and the only hope was to fly some place where I could have meals and laundry taken care of, and hope that the two week recovery I had experienced in Mount Shasta, California would kick in again. So I started looking. Nowhere was there a place which was reasonably mold free, with the services I needed, which I could get to by plane. Suggestions I received at this point were to find a relatively mold free apartment in a good location, or to go camp in the desert. Neither of these were feasible for someone alone, at my level of functionality.
I waited. Eventually, in mid February, my parents decided to attend a retreat weekend in Mount Shasta, and I accompanied them. I got there with sheer determination, lying in the back of my parents' car, my eyes covered with an eye mask, noise-canceling headphones on my ear, covered with blankets, doing everything I could possibly do to block out light, noise, and vibration from the road. Somehow I survived the trip, and as we came within a few miles of Mount Shasta, I started to perk up. I sat up in a cafe, in Weed, California, for a pleasant meal with family, and by the time we got to Shasta, I was managing short gentle walks again.
I lived in Mount Shasta for three months. First in a motel room with the windows open 24/7 to the fresh air. Then on the deck of a friend's mobile home, and then on the deck of a home which was somewhat tolerable for brief periods during the day. For two months, I improved. I hiked, played scrabble with local friends, managed a harsh pioneer existence, cooking and doing laundry outside.
In those months of improvement, I jumped into action, in trying to solve the problem that I myself had dealt with the previous winter. Namely, that for severely ill patients with ME/CFS and other similar diseases, including severe cases of Lyme disease, that one could end up genuinely stuck in moldy, toxic environments. Even with full knowledge that a good location, in toxin-free housing, improvement even recovery would be possible, patients might be in situations where they were utterly incapable of leaving. They needed help to move, appropriate transportation, and most importantly a place to go. A place where they were given adequate care, a peaceful restful environment, free of toxins which further compromised their immune system.
Thus was born DFEND, NFP, a not-for-profit organization incorporated in the State of Illinois, whose sole purpose was to found such a place. Yes, I have experienced relapses since those months in Shasta, the first one severe enough that my parents had to come, rescue me from Mount Shasta, and bring me home. But this vision of a safe, healing environment, a 21st century sanatorium, has never faded. And one day, bedbound patients will have a place to go to, and medical transportation
to get them there.
I would be so grateful for a place to go!
ReplyDeleteAwesome post and testimony, Christina.
ReplyDeleteKim G
Thanks so much Kim!
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