Looking back over the past year, it’s hard to believe I’ve come this far and that my life has pretty much returned to normal. My journey with systemic scleroderma began in May 2009, as I was a getting in the hot tub with my husband and noticed tingling in my palms. As a nurse, I simply attributed this to tendinitis as I had been bicycling with my grandson a few days earlier and simply thought I overdid it. A few days later, more symptoms developed with left lower extremity tingling. My symptoms rapidly progressed to include difficulty swallowing, shortness of breath, massive hand and lower extremity swelling with discoloration of skin, tachycardia, quadriceps weakness, burning sensation of the skin and fatigue. I would cry for no reason. Some mornings I would wake up terrified, as it felt like I had a rope around my neck that was choking me, due to the swelling and fibrosis. In order to escape the living hell I found myself in each day, I would remain in a recliner, sleeping, and have absolutely no idea how I maintained the business I own.
I went to my family practitioner who referred me to an internal medicine specialist and infectious disease specialist, none of whom could find a diagnosis. I am seronegative, so the testing for autoimmune disease was negative, although my clinical presentation was not. I went to an orthopedic hand specialist who gave me cortisone injections in the wrists, thinking I had carpal tunnel. I was also seen by a neurologist, who suspected an autoimmune disorder. I was then examined by a dermatologist, who indicated I had crest syndrome. My skin began rapidly fibrosing at that point, affecting my hands, forearms, neck, right lower face, lower legs and thighs. It was also spreading around my abdomen, chest, and into my upper arms. I had a tingling sensation in the occipital skull. I learned later on that this tingling occurs when the disease is active. I began developing severe itching and over the next several months, my hair began thinning. I remember seeing hair on the floor in the bathroom, literally in clumps.
My husband and I were scheduled to go on a vacation to Napa Valley, which I did not wish to cancel as we had planned for it over a year. To say the least, travelling was difficult and much of the time in Napa Valley was spent looking out over the patio from our room, wondering if this was the last time I would ever see that beautiful site again. Needless to say, I was emotionally distraught at my diagnosis and literally in a state of panic. In the morning, I would wake up with massively swollen discolored legs, which I elevated on pillows, trying to reduce the swelling before going out to see the sites for the day.
I have always been considered to be a very determined strong-willed individual and decided that I needed to learn everything I could about systemic scleroderma. So, I began intensively researching information on the internet. The more I read, the more depressed I became, as there is no cure for scleroderma and the immunosuppressant therapy for me was not the answer.
I recall it was in September 2009 when I stumbled upon the Road Back website. When I first began reading the information and testimonials, it was astounding to learn that so many individuals have been helped with a simple antibiotic to treat such a devastating illness. Fortunately, I was able to obtain the name of an AP physician and my state and scheduled an appointment or the end of November. I purchased the two books recommended that were written by Henry Scammell. When they arrived in the mail, I returned them a day later to Barnes & Noble, as I simply could not believe or accept that my physicians would not have recommended this treatment if it truly worked. After reading additional information on the Road Back and praying to God to help me find the answer, I called Barnes & Noble the next morning and asked him to please hold the books I had returned the previous day. I then repurchased the books and as my husband and I were driving to the scleroderma center in Chicago, read them both from cover to cover out loud to my husband. By then, there was absolutely no doubt in my mind and my decision was made. The appointment at the scleroderma center in Chicago was merely to hear the physician’s recommendations for treatment; because I was convinced AP would work.
The physician at the scleroderma center offered more of the same–immunosuppressant therapy and symptomatic treatment. After a nearly 2 hour appointment the physician decided that she was going to prescribe Cellcept, which I promptly declined. I indicated I was pursuing antibiotic protocol and had already scheduled an appointment with a specialist. I was seen by an AP physician in November 2009 and started on IV Clindamycin for 5 days, then on Minocycline 100mg twice daily. Within 2 days of starting the IV Clindamycin, I began having a herxheimer reaction, much like a mild flu with pin pricks under the skin on my forearms. Upon driving home with my husband, I noticed I was less short of breath and that the swelling on my legs had already begun to decrease. This was my miracle, the miracle of antibiotic therapy.
Over the next three months, things began to improve even more. I no longer had heartburn, shortness of breath or tachycardia. The scleroderma had also affected my intestines before I could begin AP. It took several more months, but this also resolved. The joint pain resolved at the 3 month mark, but I do have migratory joint pain on occasion to this day. I returned for a routine follow up appointment to my family physician after I had been on AP for 4 months. He was astonished and admitted to me that the last time he saw me he thought I was “going to die.” I explained the antibiotic protocol and he was amazed.
In May 2010, I pursued repeat testing for Lyme disease, after reading additionally on the Road Back that it seems to occur frequently in those of us who have other autoimmune disorders. Although the initial testing the year before at a different clinic was negative, my test through IGenex was positive this time. I initiated treatment with an LLMD, who prescribed another antibiotic, antiparasitic medication, vitamins, and some supplements. Prior to AP, I had cardiac and lung testing were abnormal. In October 2010, I requested repeat testing for cardiac and lung function, which had both returned to normal.
Today, I am truly blessed with having regained everything I thought I had lost with scleroderma. Those dark days are finally behind me. In going forward, I wish to give back to others who are where I was before the Road Back helped me regain my life and my health. So, when asked to write my testimonial, I readily agreed, with the hope that my words might help someone else begin their journey and join me on this road to wellness.
My husband and I returned to Napa Valley again last fall, but this time was much different. Everything was more vibrant, the scent of rosemary, the sound of hummingbirds, and the very majesty of life itself.