Rafael, a psychology professor, began with symptoms around February 2000. At that time he had severe wrist pain alternating on both sides that would last 15-30 minutes at a time. It would recur at odd hours, without a pattern or related to any physical exertion. Then the pain began to migrate to his shoulders, hips, and ankles. Rafael went to the doctor and had blood tests but a rheumatoid factor was not drawn. The symptoms got progressively worse. Rafael then went to another doctor in October, and was found to have a positive rheumatoid factor, near 100.
Joan, a family doctor trained at Harvard Medical School, had just gone through her own bout with a serious and chronic illness. She had been diagnosed with Lyme disease in July of 1999 and had neurological symptoms and severe fatigue. She had to go out on disability for over six months and had significant symptoms for two years. After many visits to doctors who couldn’t help her (and some of whom said her problems were in her head), she fortunately found a doctor that put her on long term antibiotics, and many other alternative health measures, including a macrobiotic diet, herbs, and acupuncture. She completely recovered, and the experience made her aware that there were other potentially powerful healing approaches than traditional medicine.
When Rafael was diagnosed with Rheumatoid Arthritis, Joan began doing research through the Internet. She discovered two interesting approaches: the allergy approach to arthritis, and the inflammation approach to arthritis.
Dr. John Mansfield and others approach rheumatoid arthritis as an allergic illness. He has a large practice in England, and speaks to curing close to 90% of his patients. He has published an excellent book on his approach, called “Arthritis: Allergy, Nutrition, and the Environment.”
Rafael followed the elimination diet outlined in the book, and found he was allergic to wheat, celery, and beets. He eliminated processed food, and sugar. The elimination diet was a significant commitment. He ate only eight food items for weeks: parsnips, cod, salmon, sweet potato, zucchini, carrots, pears, turnips. He then added back food items, one by one, following Dr. Mansfield’s directions strictly. He began feeling much better, and his symptoms dissipated, but did not disappear. This lasted for about six months, until July, when he began getting worse. He resumed the elimination diet, this time with no success or abatement of pain.
We then discovered an approach that linked rheumatoid arthritis with many other “inflammation” syndromes, such as multiple sclerosis, bowel diseases, chronic allergies, chronic fatigue, etc. The understanding is that the gut and detoxification systems (especially liver) are damaged by the typical Western diet. This results in the gut absorbing more than it should when it is healthy, and causing the body to develop inflammatory reactions. This results in a syndrome where people can become more sensitive to foods, and environmental toxins. Yeast is often involved.
This approach is outlined in many books, an approach called “functional medicine.” They have a website: fxmed.com or functionalmedicine.org. Books that use this approach and we found particularly helpful were; Sherry Rogers, No More Heartburn (it’s much broader than heartburn) and Elizabeth Lipsky, Digestive Wellness.
There are stool tests that can be done to assess gut health. Rafael’s tests came back very high in yeast. We treated the yeast with antibiotics and probiotics, and followed the directions on healing his gut, taking supplements and eating a very restrictive diet.
At this time, he also began Five Elements acupuncture, which he found to be very helpful. Each time he had an acupuncture treatment his symptoms were notably relieved.
He did somewhat better for several months, and then took a significant turn for the worse. Despite all efforts, his pain became worse, week after week. We tried not to have him take pain medications since these are supposed to contribute to the difficulties with maintaining digestive health. Rafael was up in the middle of the night crying in pain. He shuffled from the bed to the bathroom. His rheumatoid factor was now in the 300s.
Joan was desperate, searching for the possibility of any other information that might be out there. Her doctor friend told her about another friend who had some information on rheumatoid arthritis. Joan called her, and she told Joan about the relationship between rheumatoid arthritis and infection. On this person’s referral, she got the book Rheumatoid Arthritis: the Infection Connection by Katherine Poelhman. Joan felt it was important to find a doctor other than herself to work with, and located a physician in Manhattan. During the weeks they were waiting for the appointment, one of Rafael’s elbows swelled and he developed a nodule the size of a lemon.
The new physician conducted lab tests, and found that Rafael’s serum was positive for antibodies to two bacteria that can be involved in rheumatoid arthritis: ureaplasma, and chlamydia. He began Rafael on minocycline, 100 mg. twice a day. Within three days, the nodule had disappeared, and most of his symptoms were alleviated! Since then his pain progressively lessened. Within six months the severe pain was gone. Slowly, modest pain and sensations associated with joint discomfort also disappeared. His acupuncturist recently suggested he stop taking the antibiotics, to see what would happen. Nothing. The pain remains gone and he is back on a normal diet. His rheumatoid factor is now zero. He goes to the gym regularly, swims and works out, and feels great. Rafael and Joan gave birth to a beautiful son, Carlo, six months ago.
A few summary thoughts:
We think that all three approaches: allergy, infection, and inflammation are potential cures for rheumatoid arthritis and other arthritic conditions, and that people can have elements of all three problems. We believe that Rafael responded so quickly and completely to the antibiotics because 1) he had an infection; and 2) we had done so much to build up his own immune system and digestive wellness that he was able to respond when he did get the antibiotics.
Most importantly, we had tremendous emotional support through this whole endeavor. We are both in a social therapy group. At our most desperate times, Joan was afraid to share with Rafael her fears about him becoming debilitated. She was scared about caring for him if he became physically dependant. She was frightened that he wouldn’t be able to cope with this with being physically disabled, emotionally, given that his physical health was so important to him. Joan brought this up in therapy, saying she felt like she was supposed to be optimistic, to pretend that I thought everything was going to be okay, when she was beginning to feel that it wasn’t. Joan felt uncomfortable being a doctor and “knowing” how bad things could get.
Our therapist, Dr. Fred Newman, gave us an important direction. He said that optimism wasn’t hoping for the best to happen. Optimism was taking the position that we would make the most out of anything that happened to us. Dr. Newman has written many wonderful books, among them Let’s Develop.
Dr. Newman and our group also helped both of us with the day-to-day struggle of living with chronic illness. It was a challenge not to let our illness become our life. It was a challenge to diligently stick to each approach without feeling deprived. We were able to be persistent and maintain hope through the most difficult times.
We know we are extremely fortunate, and hope that our experiences can somehow help others who are going through this difficult chronic illness. It can be extremely frightening going against traditional medical knowledge, even for doctors. Looking back, we feel it was a brave decision on both our parts, and want to support those who make similar difficult choices. We also hope to get some of this information into the medical community so that more people can have more choices available to them.