My first Portland medical appointment was in September of 2014, a week and a half after moving back to my city. This first appointment was with my sister’s naturopath, Dr. S, with whom I had spoken once on the phone before the move.
That phone appointment had given me great hope. Dr. S was not a gastroenterologist, but she said she understood the basics of IBD, and unlike my Madison doctors, she was looking at all of me–my whole body. On the phone, it became clear that she was interested in both my colon and in my general inflammation–knee pain, skin problems–and even in my emotional wellbeing. She spoke in caring tones. She prescribed not only turmeric supplements and a gentle medication to try, but also a diet plan, an exercise regime, and even daily meditation.
I thought, after that first phone appointment, that Dr. S might actually be what I was desperately seeking. Here was an expert who had already done the research on alternative care, and she seemed to understand inflammation and IBD. Maybe I could let her use her expertise to chart me a course towards health. Maybe I could finally relax a little, let someone else do the thinking.
So I was happy to meet with her in person. I found a parking place near her downtown office, and entered a waiting room decorated in soothing off-whites and greens, with plants scattered around the tables. Dr. S turned out to be young and pretty, with a broad smile, curly hair, and studious glasses.
I caught her up on my progress since we’d talked. My new macrobiotic diet was working! For the past few weeks since starting it, I had been largely pain free, with much more energy than in the previous several months since diagnosis. My body must love this new regime of whole grains, seaweed, and soy products. Symptoms of proctitis were still there–I still had urgency, blood in my stool, occasional strange internal pains, and reduced energy. But this was the biggest improvement since my symptoms had begun the previous October.
Dr. S agreed this was great news.
Since my body seemed to like the current diet, we decided we should now work on healing the damaged mucosal lining of my colon–the surface most affected by colitis.
She had several suggestions. I was to keep taking turmeric, and to increase my dose. This made sense; for years I’d been hearing that turmeric, especially a substance in it called curcumin, is miraculously anti-inflammatory. I had even recently read in The Autoimmune Epidemic that “investigations show that two grams of curcumin a day helps to control ulcerative colitis.” And since turmeric is a root and seemed to have no adverse side effects, I was happy to take more of it.
She next prescribed bone broth, which I was to start making at home. Dr. S was not the first to suggest this–several of my friends and countless websites had mentioned that bone broth is great for healing the gut and boosting immune health. Before our departure from Madison, one friend had even given me a bag of bone powder to mix into foods, relating how his own gut healing, years earlier, had relied heavily on bone broth and bone powder. I hadn’t been able to make bone broth while hauling our things across the country, but now I could start.
Dr. S also wanted me to take a med called low-dose naltrexone, which she said would help get my overactive immune system back on track. She had mentioned this gentle medication on the phone, and in August I had dutifully ordered it from my Madison pharmacy. But a few days later, as I was getting out my credit card to buy it, the pharmacist said it would take up to two months to be fully effective. At that I balked. I was just beginning my macrobiotic diet, which could take a few weeks to show its effects, and I didn’t want to change two variables at once. I handed the med back to the pharmacist and left empty-handed.
Now that I had settled into my new diet, that excuse was moot. It was time to trust Dr. S and try the low-dose naltrexone. But as she and I spoke about it in her office, I found myself balking again.
To be off of meds–to be med-free, solely reliant on food–was a wonderful luxury. It felt like a major achievement after months of medications. I was starting to emerge from the hole I’d been in. I wanted to believe in my body’s own ability to heal itself, with only hints from food and exercise, and starting a new med would feel like a backtracking. As “low-dose” and low-impact as this new med sounded, it was still a synthetic chemical that I would be putting into my body every day.
I sheepishly suggested we try the other remedies first: the bone broth, exercise, meditation, and the probiotic she had also mentioned. Could I have a little time before trying the low-dose naltrexone? Dr. S seemed reluctant to wait longer, but said she understood.
The new probiotic Dr. S wanted me to start was HMF Super Powder. Its beneficial bacteria would help replenish my depleted gut. She had this powder here in her office, and when I bought it as I was leaving, I gulped at the price: around $70. I hadn’t yet worked out Ron’s and my Oregon health insurance, so I was paying for this appointment and the probiotic out of pocket. But, I reasoned, my health was the most important thing to spend money on, and poor health was already costing me a great deal of money in lost wages. I bought the probiotic.
I stepped out into the sunny midday air feeling hopeful. I had found a good naturopath! Things were moving in the right direction.
The next morning at Mom and Lanny’s house, along with my morning miso soup and tofu scramble, I mixed my new HMF Super Powder probiotic in with some water and drank it down.
That night, for the first time in weeks, I was doubled over with a terrible stomachache.
Alarmed, I stumbled downstairs to the kitchen and got the powder out of the fridge to examine it. It was the most likely culprit, the only dietary thing I had changed in the last few days. I had trusted Dr. S and not looked closely at what I was taking. Now I noticed the small type on the container: Other ingredient: Fructose.
Sugar, especially added sugar, is to be avoided on macrobiotics because it is supposedly “too yin,” and thus not a balanced food like whole grains and legumes. My skepticism about the yin and yang of various foods notwithstanding, I had been strictly avoiding sugar for weeks after reading that it can kill or alter gut bacteria, and that it’s generally inflammatory.
This added fructose was the likely cause of my stomachache. It could possibly have been the probiotic bacteria themselves, but intuition pointed to the fructose. Whatever the case, I opted to listen to my gut and did not take the probiotic again. So much for that $70.
The incident shook my faith in Dr. S. I had been very clear that I was avoiding sugar. How had she missed this detail?
Her error made me begin to second-guess her other prescriptions as well. Maybe it wasn’t time to blindly trust her, yet. Googling a little more about bone broth the next day, I began to notice skepticism about this remedy among science-minded people. Bone broth is prescribed for gut problems on numerous health websites, but is not backed up by science and seems to be more or less a fad.
Was it possible Dr. S was ill-informed? Did naturopaths know something about bone broth that science hadn’t yet verified? This did seem possible, but I felt more seeds of doubt sprouting within me.
Next I Googled low-dose naltrexone (LDN). This medicine has more science behind it than bone broth, but that is not saying much. The sweeping claims on its main website are extremely suspect: LDN is credited with helping everything from HIV/AIDS to cancer to autoimmune disease. This begs the question: How can a drug help both cancer and autoimmunity, when fighting cancer requires a strong immune reaction, whereas fighting autoimmunity requires reducing the body’s immune response? In other words, how can the same drug boost the immune system and tamp it down at the same time?
Proponents of LDN seem to wave this question away, admonishing that LDN “improves” the body’s entire immune response, making the immune system better able to discern between the body’s own cells and hostile invaders. Still, when I Googled low-dose naltrexone I quickly found medical experts who were dissatisfied with that answer. And an article reviewing the scientific literature on this drug cautions that, “As a daily oral therapy, LDN is inexpensive and well-tolerated. Despite initial promise of efficacy, the use of LDN for chronic disorders is still highly experimental.”
My final seed of doubt came from noticing that that same article says LDN “has been demonstrated to reduce symptom severity in conditions such as fibromyalgia, Crohn’s disease, multiple sclerosis, and complex regional pain syndrome,” but does not mention ulcerative colitis anywhere.
Again: What did Dr. S understand that I did not? What gave her confidence that this drug would work for my disease, if it had not been tested? Was it enough that the drug seemed to help with other inflammatory conditions?
I was already reluctant to take synthetic drugs unless absolutely necessary. These readings were all I needed to dissuade me from trying LDN, at least for now.
Over the following weeks, in this new second-guessing state, I began to slip quietly away from Dr. S. I didn’t let on to her about my skepticism–she and I emailed back and forth a few more times and I gave her updates. But ultimately, I never saw her again.
Why was one minor mistake–the overlooking of fructose as an ingredient–enough to trigger my disillusionment with everything Dr. S had prescribed? Looking back now, I think that for all my hope after our two appointments, my faith in any doctor was fragile to begin with. By now, two out of three of my conventional Western doctors had made major mistakes with my colitis, and an acupuncturist had left me with crippling stomach pain and nausea. I was getting used to having my hopes dashed by practitioners. It was a bit of a self-fulfilling prophecy: If I got my fragile hopes up too high, then the slightest mistake could send those hopes plummeting.
As much as I wanted a doctor I could trust, by now I had trouble trusting anyone.
I appreciated many things about Dr. S. She was the first practitioner who looked at my whole system, a trait I would continue to seek in others. She gave me hope and made me feel cared for at a time of fearful transition, when I was otherwise completely without medical care for my terrifying disease. I decided that what she lacked was mainly specific expertise in ulcerative colitis. Dr. S was a generalist, and if she had better understood my specific disease, she would not have prescribed me a probiotic with fructose or a medicine that has not shown effectiveness specifically with UC.
I began looking for a naturopath who specialized in my specific illness. In the meantime, I also needed to find a gastroenterologist here in Portland.