Julia Schopick: LDN appears to be effective for some diseases that have at their core a disturbed immune system. This includes HIV/AIDS and many cancers. And, in the mid-1990s, another one of my book's contributors, Dr. Burt Berkson, began to use LDN in combination with intravenous alpha lipoic acid to treat some very serious forms of cancer. In fact, Paul Marez, another of my book's contributors, is an eight-year survivor of metastatic pancreatic cancer. As we all have heard, pancreatic cancer is often considered an automatic death sentence. In fact, MD Anderson (a cancer hospital in Texas) told Paul that he had just months to live. But he found Dr. Berkson and the LDN/IV alpha lipoic acid, and the rest is history.
Mary Shomon: Are there safety issues or downsides to the use of LDN for autoimmunity?
Julia Schopick: The doctors and patients I interviewed for the book didn't have negative feedback about LDN. Naltrexone was approved in the mid-1980s for use in addiction treatment, usually at a dose of around 50 mg, and found to be safe at that dose. That dose is more than 10 times the "low-dose" level being used to treat autoimmune diseases. From what I understand, many physicians specializing in addiction safely prescribe doses even higher than 50 mg.
One key "side effect" that people do complain about with LDN is "vivid dreams." (Of course some people-my mother, for example, who takes LDN for her chronic lymphocytic leukemia, say they enjoy their dreams much more with LDN!)
Of course patients need to talk to their doctors about the risks, benefits and side effects of any treatments they pursue.
Mary Shomon: What about research and studies to support some of the patient claims about LDN?
Julia Schopick: There is research to support the patient evidence for LDN. Small, but very positive studies have been conducted. They are listed in my book, and are also on several websites, including http://www.lowdosenaltrexone.org and http://www.LDNScience.org. Many of the studies have to do with multiple sclerosis, and in fact, one study-conducted at the University of California at San Francisco (UCSF) was funded by LDN advocates. It is very unusual for patients to raise funds for studies. There have also been some very positive studies on LDN for Crohn's disease, conducted by Ian Zagon, PhD and Jill Smith, MD at Penn State. These studies were published in respected medical journals.
Mary Shomon: Why do you feel that many rheumatologists, endocrinologists and neurologists who are treating autoimmune patients don't know about LDN in the first place?
Julia Schopick: Dr. Berkson explained it very well in Honest Medicine. He said that doctors are not encouraged to think "outside the box." He goes so far as to say that doctors are trained, rather than educated, and that they are "supposed to" get all their knowledge from their medical school education and their journals. And, remember that most large-scale clinical trials are conducted by pharmaceutical companies, and that no pharmaceutical company would be able to get a decent return on their investment by conducting trials on LDN, and you have some key reasons why these specialists are not prescribing - or even hearing about - LDN.
Mary Shomon: Why do you think that some doctors who have heard about the use of LDN still won't prescribe it?
Julia Schopick: To me, this is the most upsetting part of what I found out while researching and writing Honest Medicine. So many of the people I spoke with told me that they learned about LDN from their friends, or from forums on the Internet, and then they found a doctor to prescribe it. When their condition improved, they were confident that their regular doctors would pick up the ball and prescribe it for them. But that usually didn't happen. Patients reported having to push doctors to even consider the option, and one patient jokingly said that the doctor doctor probably prescribed LDN just to get rid of her!
Mary Shomon: What do you suggest for autoimmune patients who are interested in finding a practitioner who might be open and knowledgeable about LDN?
Julia Schopick: In my book's appendix, I include links to several pages of information about LDN that patients take to their doctors. They can also go into the forums and chat groups, where patients share information about how to find a doctor to prescribe it. Integrative doctors are generally more open to treatments like LDN, so, patients can contact organizations like ACAM) to find a more open-minded doctor. Another way is to contact one of the compounding pharmacists who are known to compound LDN correctly, and ask them for the names of doctors in your geographical area who prescribe LDN. (Several of these compounding pharmacists are listed on www.lowdosenaltrexone.org.)
Mary Shomon: Where can readers find out more about the book Honest Medicine?
Julia Schopick: More information can be found at www.HonestMedicine.com, as well as the Honest Medicine Facebook page. I also invite readers to contact me directly at Julia@HonestMedicine.com, if they have any questions.Note: You can listen to a radio interview I did with Julia Schopick, talking about "How to Be Your Own Patient Advocate," in this streaming program, or download or share a free MP3 copy of the interview.