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?” Read the rest of this entry

LDN Journal: Finding a Doctor (part 2)

I should mention, before I start, that 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.

***

The weight of starting over with a new doctor cowed me for days. He just left. He quit. It was hard to believe. Doctors don’t just quit. They move practices, change locations, but they don’t just quit. I sat in this reality for days—He quit; I need a new doctor.

It was nearly a week before I could muster the energy to begin searching. One advantage of being on the east coast (in the U.S.) is there are lots of fantastic doctors. The disadvantage for me was, there are lots of fantastic doctors. But the reality was, I didn’t want any of those fantastic doctors. I didn’t know them. I knew mine. I had spent three years intentionally building a peer-to-peer relationship with him. He understood me, assisted me with my natural methods, and challenged me in my thinking. How long would it take to find that again? A year? Two?

Finding a new doctor is like dating. Someone suggests, “I know this great doctor…” and you go. You set a time, sit together, engage in small chit-chat, and begin to ask get-to-know-you questions. If, by the end of the date, we hit it off, maybe I’ll call you again.

I hadn’t been on a date in more than three years. Read the rest of this entry

LDN Journal #1: Getting the Prescription (1 of 2)

This series focuses on my experience with LDN in treating colitis (and therefore IBD; also applicable to Crohn’s), and not the ‘how to’ of it. There is plenty already written. Read about LDN here and here.

***

The idea for LDN came to me a year ago, but I put it off—I had other treatments to try. At the time, I was just at the end of bacteriotherapy, and wondering where to go next. My wife and I surveyed all of the credible natural treatments of which we had knowledge, and set about the conversation. We discussed what had worked so far: the SCD, probiotics, stress reduction, and now bacteriotherapy was added to the list. We decided to undertake a year of natural antibiotic treatment, as nothing in it contradicted those treatments which were currently working—change the bacterial neighborhood. So LDN went on hold.

The year of antibiotics came and went, and I made significant improvements. However, I still was not fully recovered, so we revisited the idea of LDN. I resumed research. The clinical and anecdotal evidence seemed strong for MS and other autoimmune conditions, and I even found a small study showing its efficacy with Crohn’s—golden. I would need that study if I was to convince my doctor that LDN was worth a try.

As I researched, read, and talked with others, I could not help but get excited. I do this every time I am confronted with a new treatment. New treatments bring new hope, and for some reason I have not explored, just the thought of LDN brought me more hope than usual. I was excited and made an appointment with my doctor, a naturopathic physician in Washington, D.C.

My inner scientist and geek took over, and I prepared for her an LDN briefing package which explained the history of the drug, how we believe it works, its efficacy with IBD, and a list of compounding pharmacies we could contact. I even gave her the name of another doctor she could contact, who has used LDN to treat IBD patients. The briefing was topped off with a complete treatment plan timeline, just so she could see how LDN fit into the big picture.

I think I might have overwhelmed her. Read the rest of this entry

An Invitation to a Journey

I have been writing this blog for about three years now. I started with the goal of consolidating all of the natural approaches to IBD, IBS, and Celiac that work, and sharing some of my experience along the way. It has been a way to share my geeky obsession with learning, and has been a great outlet for me. To that end, I have gotten a lot done.

If you haven’t noticed, I haven’t put out a lot of content over the past six months. I’ve been evaluating the blog, and envisioning where to go from here. In my meditations, I as constantly left with the feeling that something was missing. So I began searching back through all of the blogs and literature I’ve digested (pun intended!) in the last three years. Indeed, there was something missing—people’s experience. Read the rest of this entry

Evaluating your Healing Plan

If you’ve been following my series on SCDLifestyle.com, check out the final post here.

OR, use the full link: http://scdlifestyle.com/2012/06/big-picture-evaluating-your-digestive-healing-plan/

Enjoy! I’ll be back to my regular posts in July.

 

Onward to health,

 

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