Using LDN to treat GI Disorders, Restless Legs Syndrome, and Sarcoidosis

Interview with Dr. Leonard Weinstock, who is an Associate Professor of Clinical Medicine and Surgery at the Washington University School of Medicine, and board certified in Gastroenterology and Internal Medicine. He is President of Specialists in Gastroenterology, and teaches at Barnes-Jewish Hospital and Missouri Baptist Medical Center. He is an investigator at the Sundance Research Center and has participated in many independent and pharmaceutical research studies. His research interests include the role of LDN in treating medical syndromes both related and unrelated to “the gut.”

In 2008, I had been working with a compounding pharmacy on treatments for small intestinal bacterial overgrowth (SIBO). As some patients with SIBO didn't tolerate the antibiotic erythromycin, I was interested in finding an alternative to assist in enhancing intestinal motility (movement). The compounding pharmacy asked if I had heard about Low-Dose Naltrexone (LDN). I hadn't, so I started looking into it. I found a small paper discussing a potential benefit of LDN on intestinal motility through its action of blocking opioid receptors (if opioid receptors are overly enervated/excited they inhibit movement). So it seemed theoretically useful. As I began to discover the anti-inflammatory properties of LDN, I also learned that LDN had been shown to be effective in inflammatory bowel disease (IBD) [Crohn's disease and ulcerative colitis] and irritable bowel syndrome (IBS), so I surmised that it might be useful not only for SIBO, but also for all conditions in which inflammation is a critical issue. After I had thoroughly researched the mechanisms of action of LDN, I began prescribing it to patients who had inflammation as part of the pathophysiology of their conditions (Crohn's disease, ulcerative colitis, post-infectious IBS) and I saw good responses to it.

My experience using LDN with Crohn's disease is not dissimilar from Dr. Jill Smith's study results. I performed a retrospective review of 33 adults with Crohn's disease who were failing treatment with 6MP and/or infliximab. I had treated them with LDN at 4.5mg for between 40-200 weeks. My data showed that half of the patients had a positive result, with 11 of 15 having complete healing as determined by an internal examination by colonoscopy. Seeing the objective pre/post effects of LDN in the intestine (not relying only on the subjective patient report) was very impressive. It was also my observation that patients who had a positive response to LDN, and then skipped their LDN, had their pain or diarrhea come right back. That kind of feedback spoke volumes. It also was remarkable that virtually all of the strong medications for IBD are immune suppressors whereas LDN doesn't seem to suppress immunity.

Regarding ulcerative colitis, I also saw a very dramatic turnaround using LDN in half of my patients who were failing strong, expensive medications. I had a patient with severe ulcerative colitis who was treated with Remicade^® and responded well to it initially, but it slowly stopped working. The patient had failed other immunosuppressants, and the condition was so severe that a colectomy was unfortunately the next step. Prior to the proposed surgery, I prescribed LDN to the patient, and we witnessed a remarkable clinical response. The patient no longer needed a colectomy and is still in remission - LDN has continued to be effective for over 6 years.

I have not seen as much of a "home run" for patients with IBS, but in one small questionnaire study that I conducted, 7 out of 13 respondents had a significant improvement during a short course of LDN. I still see these IBS patients come in for their yearly refills of LDN and they (and I) are thrilled with their clinical response.

I had a relative who had contracted post-infectious diarrhea which developed into IBS, and then 2 months later he developed a terrible case of restless leg syndrome. I was working with him to help him recover from his 14 year illness. Around that time, in 2005, I went to a conference on bacterial overgrowth. A new antibiotic medication, Xifaxan^® (rifaximin), had been introduced at the conference as a new FDA-approved treatment for diarrhea. There was evidence that it also provided benefit for SIBO/IBS. I treated my relative with Xifaxan^® and found that both conditions (both the IBS and the restless leg syndrome) improved significantly. That caused me to wonder what the connection could be between IBS and RLS (because they both resolved simultaneously). It also caused me to wonder what I could do to maintain my family member's positive result (since both conditions tend to be chronic, recurring conditions).

That is where LDN came into the picture for me. If LDN is an immune regulator and anti-inflammatory agent, then that could create a scenario where normal conditions in the gut could be maintained (and therefore keep the IBS and RLS from recurring). After we had achieved a remission in my family member's IBS and RLS, I started him on LDN, and he has yet to have a recurrence of the conditions. The treatment has been continuous for 7 years. In fact, another one of my family members also developed RLS after food poisoning. She responded nicely to the antibiotic rifaximin (Xifaxan^®) and afterwards I started her on LDN. The RLS has successfully been kept at bay for 6 years using LDN.

The initial results with LDN encouraged me to look further into it and do more research and treatment with it.

It's my current practice to treat patients who have RLS (and/or IBS) and SIBO with antibiotic therapy followed by LDN, regardless of response to the initial antibiotic. My current thinking is that one needs to deal with underlying damage to the small intestine first, and then utilize pro-motility and anti-inflammatory medicine. Very few patients are cured of RLS - it is normally a chronic long-term condition - but my experience treating patients with LDN after antibiotic therapy has seen very positive results (lack of recurrence).

I have now treated well over 250 patients with RLS and seen this positive effect with many patients. I have also been studying the treatment of patients who have SIBO and RLS, and only RLS, with LDN, and in the near future, I will be discussing my findings at an upcoming LDN conference and also having an article published in the scientific literature.

In addition to Crohn's disease, ulcerative colitis, and IBS, I have personally seen how patients with chronic refractory pain syndromes (alloydynia, Complex Regional Pain Syndrome) have responded significantly to LDN. Additionally, I observed one particular patient with multiple sclerosis whom I diagnosed with Crohn's disease during a routine screening colonoscopy. He actually had no symptoms from the ileal inflammation but he had severe multiple sclerosis which was failing all medication available. I chose to treat both with LDN and when he returned for a follow up visit in 6 weeks, he was no longer using his cane!

I've also had a very interesting beginning experience using LDN and sarcoidosis. Sarcoidosis is an idiopathic condition with granulomas which consist of T-cells and macrophages and it starts with T-cell activation for unknown reasons. It can involve any part of the body, most often the lungs and the lymph nodes, but it can also affect the gastrointestinal organs and the skin.

A patient was a referred to me a little under a year ago who, in 2011, had gotten an abdominal ultrasound to screen her for abdominal aortic aneurysm and instead they found lymphadenopathy and made the diagnosis of sarcoidosis of the abdominal cavity, organs and lymph nodes. It continued to get worse, and subsequent CT scans were abnormal- showing enlargement of her liver and spleen, nodules and defects in the spleen that were getting larger, and lymphadenopathy that was also getting larger. Before I saw the patient, I was thinking, what am I going to offer her (assuming these changes were from sarcoidosis)? Thinking about how LDN works in terms of regulating T-cell activity, I thought it made perfect sense to try it out with this patient. I got in contact with LDN Research Trust's scientific advisors to ask about others' experience with sarcoidosis and two of the advisors said they may have tried LDN on a patient with sarcoidosis. So there was a small amount of data available about this.

When I saw the patient, I found that her sarcoidosis was primarily in her skin. She was taking tetracycline (antibiotic) to treat her very painful skin rash (what she describes as a "hot poker" through her skin) but it was still wasn't well controlled. She also had significant fatigue as part of her generalized illness with sarcoidosis. She said that she developed neuropathy with methotrexate and had bad side effects from steroids. I decided to offer to apply LDN to her situation, and she agreed to try it.

I gradually increased the dose up to 4.5mg, and saw her back in follow-up in 2 months. I found out that she had decided to take herself off the tetracycline (which she has not been able to do before that) and her skin was now fine. She also reported that her fatigue was dramatically better as well. When we did a repeat CT scan 5 months later it showed a reduction of the previous abnormalities in the liver, spleen, and para-aortic lymph nodes.

From that positive experience, pulmonologists have started to send me patients with pulmonary sarcoidosis who are not able to get off steroids (but need to), or patients who have refused steroids or immune suppressors. I am currently treating two patients in that situation. One patient is severely ill, with full congestive heart failure and sarcoidosis of the lung. She was dependent on steroids and had peripheral edema (probably partly due to the congestive heart failure and partly from the steroids). Since being on 4.5mg of LDN for 2 months, her breathing is better: she went from needing oxygen 24 hours a day to only using it with vigorous activity. We are also tapering her off the steroids. The other patient has only been on the LDN for less than two months, so we are still waiting to see the outcome.

If there are other pulmonary sarcoidosis patients who are not able to get off their steroids or refuse to take steroids or immune suppressors and are able to travel to see me at my St. Louis practice, I would be happy to evaluate their situation. Interested patients may contact me at LW@gidoctor.net.