In 1986 my husband Gordon and I both retired from the Texas Department of Health and took our travel trailer to Vancouver, B.C. to see EXPO ’86, your fantastic Canadian World’s Fair. We met Canadian folks we enjoyed and joined them at Dogwood Pavilion, a senior center in Coquitlam, Vancouver’s suburb city to the East. Canadian Immigration invited us to stay. A Douglas fir tree fell and leveled our trailer during a snowstorm, so we moved into an apartment near Town Centre, Coquitlam. Over the next 12 years we hiked with the Dogwood Pavilion’s Cliffhuggers Club, bowled at Senior Games and Winter Games with their carpet bowling team, swam at Senior Games with the Lower Fraser Valley Swim Club. I learned to swim the butterfly stroke so I could compete in the 100 meter and 200 meter Individual Medley doing all four strokes. We took lessons in ice skating and cross country skiing. We were healthier and more active than at any time during our lives.
In 1991 several days after a rough hike through brambles and thorns near Minnekhada Park a few miles East of Coquitlam, I noted a very tiny tick dug deep into my upper thigh, with a reddened rim around the hole. I had never seen one that small, and took it out with tweezers. Shortly after that I began to have severe unrelenting muscle pains, more than could be ascribed to physical exercise. I did not connect the tick to the pains, and thinking it was just a flu that would go away, I rested, but did not recover. I tried to resume my sports and continued competitive swimming in spite of increasing pain. The water seemed to help a little, and the hot tub helped a lot.
I had to stop hiking, as only a slight incline on a sidewalk would produce sudden severe calf pain. I had to stop carpet bowling as I could no longer stoop to deliver the ball. My General Practitioner tried antiinflammatory medications, many of them, but they were of little help. My elbows developed tendinitis. I had to wear braces on my wrists. I had repeated urinary tract infections, ear infections, sinus infections, and stinging pain all along the spinal column, relieved only by very, very hot water. Eventually for the unending pain he sent me to a rheumatologist, who scoffed at me and told me to come back when I was sicker! My GP then referred me to an endocrinologist when something was wrong with my thyroid. She said my pain sounded like arthritis. Thyroid medicine was begun.
But the pain went on another year during which time I could scarcely leave the apartment due to pain. I would forget something I had done only a few minutes before. My speech was slurred, and it was hard to swallow sometimes. Sleepless nights of sharp stabbing pains led to groggy days. I remember crawling to the bathroom because I could not walk without falling. I waited on a list for a sleep study for 2 and a half years! Dizziness, vertigo, nausea, and constant digestive upsets muddied my world as the days wore on. One morning I tearfully found I could not hold a fork in my hand to eat because all the strength had gone out of my entire arm from holding a frying pan for a moment to move it off the burner. My husband had to feed me. The weakness was unbelievable. The mall was across the street but I could not walk to it. I had been used to hiking mountain trails all around Vancouver for 5 hours straight!
Finally in 1993 my GP sent me to a different rheumatologist in New Westminster, B.C. who diagnosed ‘fibromyalgia’ by criteria that were newly developed. He prescibed an antidepressant, and a support group to learn how to cope with this new lifestyle of chronic pain. My hiking group and bowling friends were long gone, and my new friends were all victims of unrelenting pain, doing the best they could to survive and care for their families.
The next year 1994 I ventured out into the garden of the co-op apartment and volunteered to plant bulbs and tend the flowers in the summertime. On August 14, 1994, fourteen years and 2 days ago, I scractched my fingers pulling wild blackberry weeds out of that British Columbia garden. I scrubbed the wounds and applied a strong antiseptic, and thought no more about it. But weeks then months, then years went by and the wounds that never healed spread… in spite of having seen 26 doctors all the way from British Columbia down through all the States to Texas and in spite of using whatever medicine they prescribed.
When a psychiatrist was recommended, I consulted Dr. Jay Goldstein of Anaheim, California., who has researched and written extensively on chronic fatigue syndrome and fibromyalgia. He examined me twice, for a week each time, six months apart. Trigger point injections helped a great deal for the chronic pain in my hip, but about the still-open wounds on my hands, he could do nothing. He said, “I don’t know what it is, but I do know it is NOT ‘all in your mind’ except insofar as your immune system failed to protect you from this. You need to find a better dermatologist.” I never did find one, to this day.
Seeking a rheumatologist in the US, I saw one near Dr. Goldstein, and he discovered that I had mycoplasma fermentans (incognito) and treated me for it until the tests came back negative.
By 1998 we elected not to return to Canada from our winter in Texas because I could no longer do much of the driving. My knees were swollen and painful, and my elbows hurt too much to hold a steering wheel. Daily I anointed my finger lesions with the ointment ‘du jour’ and wore clean white cotton gloves all the time, day and night, to keep them clean. Whatever happened to the avid outdoors girl who loved to hike to mountain summits only seven years earlier?
By 2004 fluid had been removed from my swollen right knee several times, and the surgeon elected to perform surgery to remove cartilage chips. What had chipped the cartilage in my knee?
By this time sharp, hard crystals were emanating from the lesions on my fingers, and looking at them under my home microscope I could see fibers, far finer than a human hair, weaving in and around the crystals holding them fast into my flesh. Removing the crystals was painful, but it was far worse to leave them in to irritate and catch on fabrics, hurting like cactus thorns fastened deep into the skin. Who would not remove a painful irritant?
In March 2005 my daughter saw a Registered Nurse on a television news station in Houston, Texas. She was describing a skin disorder called Morgellon’s. “Maybe that’s what wrong with Mom’s hands?” My daughter was right-on! I phoned the news station, paid to buy the TV clip, and there I saw on the screen pictures of microscope slides just like my own!
The nurse was a Family Nurse Practitioner, whose office was only 55 minutes from my Texas home! She told me my lesions appeared to be Morgellon’s disease, and that 95% of persons with Morgellon’s test positive for Lyme disease. What? Lyme disease?
I had heard of Lyme disease in the Fibromyalgia Support Group, as a few folks back in the East had seemed to have Lyme instead of Fibromyalgia. If I had had Lyme disease symptoms, wouldn’t any of those rheumatologists or general practitioners have tested for it? Apparently not.
The only known treatment for Morgellon’s was to properly treat the Lyme disease, and then the Morgellon’s usually improved. This Family Nurse Practitioner drew blood samples to send to IGenex Lab which specializes in tick-borne illnesses. Three weeks later they came back positive for Lyme disease, (even by the CDC’s tough standards!) and the co-infections named bartonella, babesiosis, and ehrlichia as well. She began antibiotic therapy to address those issues in proper sequence in early May, 2005.
During those three weeks, my local Texas General Practitioner had sent off an ELISA test to a different lab which came back negative. Based on that, he did not order any antibiotics. If I had not had the nurse treating me under an MD’s supervision those serious infections would have gone on unabated indefinitely. How many other folks all around the world are suffering severely from not just one but several tick-borne illnesses? The mycoplasma is known to be another of the co-infections, so I have had six!
By now I have been taking carefully regulated antibiotic therapy for a little over three years, with calculated intermissions to see how long I can go without antibiotics before relapse, usually brought on by overexposure to the sun or excessive heat. I am doing great, am able to race my grandchildren in our kayaks in the river, and go to yoga class twice a week. I am strong enough to knead big batches of homemade bread dough with both arms until it is silky smooth and ready to pop into the oven. At last I am truly alive again!
I wish I could say the Morgellon’s was gone, but it is 85% better and seems to be improving very slowly. I can live with that because I have most of my life back. Current research suggests that it may be another of the tick-borne illnesses, transmitted to humans through the bite of an infected tick, and not contagious. The most reliable, authentic website is www.thenmo.org.
My husband and I recently viewed the newly released, remarkable documentary “Under Our Skin.” It won awards at the Tribeca Film Festival in New York in early Spring, 2008. It points out that I am not at all alone in the saga of the last 17 years. The CDC says that 20,000 new cases of Lyme disease are reported in the United States every year, and admits that this represents only 10% of actual cases. This means that there are 200,000 new cases a year in actuality! Is this not of epidemic proportions? How many other people out there are suffering with the body-wide symptoms I have described, not knowing that they can be helped with a proper diagnosis and treatment?
Please, everyone, go to www.UnderOurSkin.com and view a trailer of this eye-opening film. Check out the list of dates and places of screenings where the entire documentary will be shown throughout the world. The list changes daily as more showings are planned. Many are free of charge. If you have a loved one of any age who is ill, please be kind enough to learn about Lyme disease. These symptoms are not merely those of old age…old age doesn’t have to be painful. In six weeks I will be 80 years old, and at last I am going strong again! Maybe your loved one can feel better too!