LDN Journal #3: Getting the Medication
This post is a continuation of my last post on finding a doctor. You can read the first LDN journal here. As a reminder, I am writing and posting this series on my experience using low-dose naltrexone (LDN) to treat IBD (colitis, for me). retrospectively. I had originally envisioned writing the LDN journal in a more real-time fashion, but life has prevented me from doing so. For me, writing these some months later has allowed me to meditate on the experience. I think the story is even better now that I’ve had time for reflection. For those wondering, yes, I am doing really well on the LDN. It has helped me to recover that last little bit, those formed stools that have been so elusive for the past four years. I have even expanded my diet some–but we’ll get to that, I promise.
…This being a new doctor, I explained everything from the beginning. I reviewed my history and how I developed colitis (as far as I can tell). I recounted my attempts at modern intervention: steroids, immune suppressants, sulfa drugs—none worked. I told him about the SCD, and showed him my improvements in 2009. I told him about the benefits I’d seen from probiotics and fecal transplants (FMT). I reminded him of the clinical improvements demonstrated in my blood work and my colonoscopies over time.
“So if you’re doing so well, why are you here?” He asked with a wry smile.
“I have a proposal,” I replied matching his expression. “I’ve been at about 95% healed for a while now and I’d like to add another layer of treatment. It coincides nicely with the philosophy of bacterial manipulation and immune enhancement that has been working for me. I believe this could be the last piece of the puzzle for me.”
I don’t know if this doctor had ever had such an assertive patient before, because he looked at me, confused, with the same kind of odd quizzical cock of the head a bird gives when you talk to it. Afraid I was losing my momentum, I jumped off the limb.
“There have been several studies showing the same benefits from immune enhancers as other immune suppressants. Since immune suppressants made me so sick, I thought, Why not go the other way? There is a small study using a low-dose of Naltrexone that shows benefits to IBD.”
I showed him a peer-reviewed study using LDN for Crohn’s disease. He asked several insightful questions about Naltrexone, and I explained that yes, it is FDA approved for substance abuse, but when given at a small dose of 4.5 mg/day, it boosts the immune system. He asked how, and I explained. He asked the risks and side effects. I explained again. He asked about dosing, and I explained the tapering up to avoid sleeplessness and the use of a trans-dermal cream to avoid malabsorption.
“Sounds like a reasonable approach given your history. But before I write a script, I’d like to go check this out. Can you hang on a minute?”
“Sure,” I replied. And I reminded him to take the summary I had prepared with him, because the website address are at the top.
When he returned, he started, “Mr. Robinson. This is a small pilot study, and we can’t generalize this small of a study group to the entire population.”
“I know,” I interrupted “but given there are no real risks here, it’s worth giving it a six-month trial.”
“And if you get worse, or if you experience anything weird, you’ll promise to come see me?”
“Promise.” I said.
“OK. I want to see you in 2-3 months to see how it is going. If it’s going well, I want to see you back 4-6 months after that.
As he looked for his prescription pad, I outlined the particulars. I want trans-dermal cream. I told him what pharmacy I want to use and why. I reminded him that there was no way in H-E-double hockey sticks my insurance would pay for this, so don’t worry about parsing out the refills over time. Write the script for the whole 6-8-month trial.
“Thank you,” I said. “When Dr. X retired, I was worried I wouldn’t find another doctor as flexible as he was; someone who would see me as a partner. I appreciate that.”
He smiled and reminded me that a partnership goes both ways. If I get worse, he said, he expected me to consider conventional treatment again. I consented.
The medication arrived in about a week. It came in a dark brown zip-shut bag. Inside were about 30 small cream syringes for applying the doses. I was to start at 1 mg/day for a month, then go up to 3 mg/day for a month, and finally increase to 4.5 mg/day, my full therapeutic dose. I was excited. I had waited for months to try LDN, and had high hopes it would help clear some of my residual diarrhea, infuriating itching, and some of the fatigue with which I was still dealing. I placed the brown baggie in my sock drawer to keep it at room temperature and in the dark.
Tonight I take my first dose.
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