My husband has had parkinson’s for 13 years. We are going to try LDN. In your book, Road to Recovery from Parkinson’s Disease, what do you mean when you write that LDN helps get the critters out of the body?
LDN for Parkinson’s Disease
Click on the purple arrow below to hear my answer to the question above which gave me the opportunity to clarify the reason some people with Parkinson’s symptoms who take LDN (under the supervision of their doctor) have been getting relief from their symptoms over the long term.
Difficulty Getting Low Dose Naltrexone for Parkinson’s Prescriptions
I have been trying to get a prescription of Low Dose Naltrexone for Parkinson’s since I came back from the Santa Fe Summit in Feb. It is very disheartening. Why is it so difficult to get? Does it work best the sooner you start?
I have heard of low dose naltrexone and Parkinson’s disease. Some people with Parkinson’s symptoms seem to have some success taking Low Dose naltrexone. Have you heard of this and how do you dose it?
Low Dose Naltrexone and Parkinson’s Disease
Click on the purple arrow below to hear my research findings regarding the use of low dose naltrexone as a treatment for Parkinson’s disease.
Many people are on the hunt for a sure fire therapy that will eliminate all symptoms. I have certainly never identified such a solution and doubt any will ever be found. There are dozens of therapies that do facilitate a reversal of symptoms however. I include low dose naltrexone as one of these therapies though it is a prescription medication that does have side effects.
Low dose naltrexone (LDN) is certainly not a quick fix so to speak. Why? It can take several years for the body to strengthen the immune system. Once the immune system is back on line, the body is in a position to address the imbalances that may be causing the symptoms. Of course there are other approaches for building up the immune system. Some people have had remarkable results using LDN which does require a doctor’;s prescription.
The DVD of Lexie who discuseses LDN as a treatment for Parkinsons given at the 2013 Parkinsons Recovery Summit in Santa Fe can be ordered from the Summit website: www.summit.parkinsonsrecovery.com
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.
My mother has Parkinsons, was diagnosed about 5 years ago in Alabama, moved to Ohio in June 2010 to live with us so that we can care for her. In Alabama, her doctors gave her little time or help. When we moved her to Ohio, we took her to OSU and they totally changed her meds…..she became worse. We brought her to a neurologist in Parkersburg, WV (close to us) and he has finally begun to listen, adjusting her meds to older ones like Comtan and Amantadine. She saw some improvement for a few weeks, but now is worse again. She also have other issues, but we feel they are reflective of her freezing often and lack of mobility. This all started when she had pain in her leg and thought it was her sciatic nerve. No one has treated her for that.
I found your website several months ago and read about low dose Naltrexone. Do you know the closest place/doctor to us that would work with this medicine? We are desperate to get her help. She is a “young” 73 years old and has been in wonderful health for years until this. Any and all information you can put us in contact with would be appreciated.
I will forward your question to Lexie who is one of the Pioneers of Recovery who used LDN to get relief from her own symptoms with wonderful results.
There will be an incredible resource available to you soon. The 2012 Parkinsons Recovery Summit is being convened in Cincinnati, Ohio (your own state!) June 22 and 23, 2012. This would be a golden opportunity for you and your mother to explore the many options that are helping people with Parkinsons recover. More information about the Summit is at:
Because of LDN, I have now titrated off of ALL of my ‘Sinemet – not even using that very occasional dose when I feel I might need it for a very long day, etc. Now, when I have a foot tremor, I refuse to let my body go there and I just consciously “stop” the tremor and it is working!
Wishing you and yours a beautiful Thanksgiving Holiday! Thank you for all that you do to give people with PD hope that they can and will get well if “they choose to” and if they do the work that it takes.
During my most recent radio show Lexie offered a fascinating presentation of how taking LDN (Low Dose Naltrexone) provided welcome relief from her symptoms. Yesterday I received an email from Patricia, a listener, giving a website address that lists other medications which should not be taken with LDN. With Patricia’s permission, I am posting this link below.
Please view the content on this website as a guide. Any decisions about LDN should of course be made in consultation with your doctor who must provide a prescription in the first place.
There is a great deal of interest in Low Dose Naltrexone (LDN) right now, which is wonderful for Parkinsons Recovery.
LDN has allowed me to titrate off of all of my PD medications except for an occasional 1/2 tab of Sinemet when I need to be “up” for a social event for several hours – other than that I have almost complete symptom control. A good website for information is www.ldnscience.org
Yea! Still another story of Parkinsons Recovery which you will be able to hear all about during my weekly radio show Wednesday (October 5, 2011) at 3 pm pacific time (6 pm eastern). Lexie will be my guest! Listen from your computer by visiting: