Scleroderma and Polymyostits

Beverly 2018 USA

Beverly Price, RD, MA, C-IAYT

Up until the Spring of 1988, I considered myself phenomenally healthy. I ran three to five miles daily, bench pressed half my weight, lead an active social life and was budding into my career as a dietitian. My health, however, took a turn for the worst at age 27 when “strange things” started happening to my body. I remember going from “good” to “bad” in a matter of 24 hours.

In the late Fall of 1988, I had a routine blood test at my physician’s office. The results indicated an early detection of an autoimmune disorder. At that point, I thought that I had better pursue medical help as I was planning a trip to the Moscow and Leningrad, the following month, to present my nutrition study at the Soviet-American Nutrition Conference. This was taking place during the beginning of the relaxation of restrictions and hard feelings and the start of a dialogue between the United States and Russia. Needless to say, my physician canceled my trip to Russia and relinquished me to no work and no exercise for eight weeks. My Thanksgiving was spent pondering my future.

It took a few years of trial and error with medications and diagnoses, but in 1991 I was diagnosed officially with scleroderma and polymyositis. Scleroderma literally means “hard skin.” It is an autoimmune disorder which causes hardening of the skin and multiple organs. When too much collagen is deposited in the skin or other organs such as the esophagus, kidneys, lungs, intestines, or heart, the result is damage to the involved organ. Scleroderma can range from a minor lesion to a debilitating and fatal disease. Polymyositis is an inflammation of the muscle which can cause damage.

So, although initially I was treated by a medical doctor for my condition. I went one step further. I consulted a well-known (and only) naturopath in the area. As a naturopath, this doctor recommended a vegan diet (no meat, dairy or eggs), exercise, herbs, vitamins, minerals, homeopathic remedies, yoga, and a positive attitude.

In addition, my daily regimen included a multivitamin/mineral supplements, borage oil (high in gamma linoleic acid which helps improve connective tissue diseases), flaxseed oil or flaxseeds (to reduce joint pain and swelling due to the high content of omega-3 fatty acids and to improve gastrointestinal problems due to Scleroderma; these have a lignan content that are plant estrogens and can aid in controlling cholesterol and protect against bone loss), two homeopathic remedies, and a Chinese herbal formula consisting of over 20 herbs formulated specific to my condition. My condition stabilized after initiating this therapy and my energy level returned. At that time, I took a minimal amount of medication prescribed by my rheumatologist.

Ten years later, in 1998, my mother-in-law was listening to David Trentham, M.D., a rheumatologist at Harvard Medical School, on the Gabe Mirkin talk show. As you may know, Dr. Trentham’s theory is that many autoimmune conditions are caused by a virus or infection in childhood that lies dormant, resurfacing later in life and affecting the immune system. He had reportedly cured several Scleroderma patients using minocycline, an antibiotic. My naturopath, too, was aware of this treatment and encouraged me to pursue minocycline treatment with my rheumatologist. After initiating treatment with minocycline, two-100 mg doses daily, I noticed an improvement in my skin within one month and began to have more energy. I also consulted with Dr. Trentham in person to solidify my treatment with minocycline. After twenty years, I still remain stable on this regimen and have taken no other medication prescribed by my rheumatologist. Eventually, I tapered down to two-100 mg doses, three times per week and am using a minocycline generic. I have also streamlined my supplements, herbs and homeopathic remedies and eat meat/fish occasionally along with dairy and eggs. I am very grateful to have put this condition behind me.

All in all, the direction your health takes is your decision. The body is a delicate ecosystem. You want to keep it balanced by eating healthy food and practicing healthy behaviors. It is important to know your body, ask questions of your medical professional, and seek out options that you think will work best for you. You are your own best advocate. I am thankful about the choices that I have made in my journey back to health and have much to be grateful for.

Beverly Price, RD, MA, C-IAYT, is a registered dietitian and certified yoga therapist who offers private nutrition counseling in the Detroit area of Michigan. She can be reached at: beverly@beverlysprice.com and you can read her contribution to the Road Back Foundation Blog, published on April 19th, 2018, entitled, “Nutrition for Autoimmune Disorders,” by clicking here.

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