Below is a response that Lexie offered to a person asking about LDN (low dose naltrexone) as a treatment for Parkinson’s symptoms which she gave me permission to post.
I was the person in Robert’s new book (Pioneers of Recovery) who has had the positive experience with LDN. I have taken it for almost 4 years and I am almost symptom free – I have slowly titrated off of all my PD medication – I was taking Sinemet and Azilect and was diagnosed with PD in 2008, although my PD symptoms started much earlier – about 20 years before that when I lost my sense of smell completely. LDN works as symptom control when you first start taking it and then after a few years I have found that my PD symptoms began reversing themselves. I now have about 85% of my sense of smell back – it started gradually about a year ago when I went into a coffee shop that was grinding their own coffee and I could smell it!!! It was the first time I have smelled ANYTHING in 20 years!!! Gradually my sense of smell has become more acute – I can now smell coffee, food, perfume and many other things – my sense of smell is back by about 85%! I cannot smell a single flower however, but I am hoping that one day I will. My neurologist has no explanation for this – she used to think all of my success with LDN was due to a placebo effect, but I now have measurable reversals in my symptoms that cannot be explained by anything other than LDN.LDN is not an overnight success – it is a long-term commitment. I was thrilled with my symptom control and being able to titrate off of all my PD meds over time. I still have right side shaking when stressed, but the benefits of LDN have worked beyond my wildest expectations.My Neurologist cannot explain my reversal of symptoms, but she is intrigued about my success with LDN and continues to write me rx’s for it. I had a hard time convincing her to write me an rx due to the lack of clinical trials for LDN and PD, but I am living proof that it works. There is an MD in Norway who started LDN a year ago and she is having the same successes I am having – she and I communicate often.Reducing as much of the stress from your life is also very important in your healing process. I had to quit my very stressful job and now do meditation, yoga and pilates. Stress plays a key role in our symptoms and the ultimate healing of our body from this disease.It is important to get your LDN formulated at a Compounding Pharmacy that understands LDN and fills a lot of LDN prescriptions. For that reason I would recommend Skip’s Pharmacy in Boca Raton, Florida. You can also call Skip, the lead pharmacist, who says “LDN is the most important drug discovery since penicillin” You can find his information on line – LDN costs about $35.00 for a one month’s supply and they will ship it to you.I started out with 3mg. of LDN and after about one year increased it to 4.5mg which is the maximum dose.Please contact me if you have any additional questions. Know that it will be difficult to get an rx from your Neurologist due to the lack of clinical trials for LDN, but be persistent and refer your doctor to the www.ldnscience.org website for more information on how it works. One contraindication is that LDN cannot be taken with any type of opiate pain medication, which is explained in the website.Wishing you the best of health! Please let me know if you get your rx.Lexie