Cane Coats: Fashionable Cane Attire!

Mission:
My success with LDN therapy for MS turned me into an advocate. My aim is to draw research attention to this treatment. My first effort was the LDN Survey I did in 2004 of 287 MS patients using LDN for MS, an attempt to aggregate patient anecdotes into a statistical format that gives an overall snapshot of user experience. The reported low relapse rate of 0.2 (1 in 5 yrs) serves as an indication that Low Dose Naltrexone deserves research attention.

Author:
My name is SammyJo. I put together this website to help raise interest in clinical trials, and offer information resources to patients and clinicians. If you have questions about my recovery on LDN, feel free to use the feedback form. My story is also in the new book I co-authored with Elaine Moore, The Promise of Low Dose Naltrexone.

I've had MS since 1995. February '04 I was at the end of my rope after years of injectable drugs, IV steroids, plus a year of chemo to quell my immune system. Nothing was working. I was barely walking with a cane, and just approved for a motorized wheelchair, when I found LDN through research on the Internet. I started at 2.0 mg the first month, then 4.5 mg. The first night I knew something was happening because I slept w/o leg spasms for the first time in years. Six weeks later I put down the cane, by three months I could stay outside on hot summer days. With the addition of physical therapy and other complimentary medical approaches, my LDN recovery has continued going on 5 years. I am enjoying life, travel & adventure with with my wonderful husband of 26 years.

This inexpensive medication (around $30/mo) has been amazing for myself and thousands of other people with MS. If you are a patient seeking an LDN prescription, take a copy of the survey results to your doctor and the LDN trials reports on this site. If you are a researcher, please help by starting clinical trials so we can learn why and how this medication works. 

Once I started to feel better on LDN, I was able to make progress on the big job of rebuilding atrophied muscles, and learning to walk again. Remember, even if you start to feel better from LDN, you still need exercise, healthy foods and anti-oxidants. See my MS Recovery suggestions. 

February 2005 Update: It's been one year on LDN. Steady recovery continues with no set backs.  I still do physical therapy twice a week. October '04 I had an MRI, and when compared to the last from May '03, there was no new activity.

June 2005 Update: Still doing great. Attended the LDN conference on June 11th, in NYC and spoke about my LDN experience and the user surveys. A 24 month full clinical trial is planned to launch in Italy for LDN & MS. Yeah! Now if some US researchers would please step forward... 

April 2007 Update: It has been three years since I started LDN, and I have made amazing progress on recovering from a debilitated state after 9 years of multiple sclerosis, thanks to LDN. And we achieved our goal to have a human trial for LDN and MS in the US, and an animal study is planned at Penn State.

Jan 2008 Update: Now at four years on LDN only, at a stable plateau. Still have a wobbly walk, from the 9 years of accumulated MS damage before LDN, but my symptoms are an annoyance, not the constant crisis I was in before LDN.

May 2008 Update: LDN continues to amaze me, I've had a great Spring, I switched to 3 mg instead of 4.5 in March which might be the better dose for my weight. Doing more physical therapy (yes, I was a slacker over the Winter), and out in the garden getting ready to set out seedlings. Finished the LDN book with Elaine Moore, and excitedly awaiting the results of LDN trials from UCSF, Italy and Penn State. 2008 is going to be an exciting year for LDN!

Oct 2008 Update: Attended the LDN conference Oct. 10th in LA and got to hear all the exciting updated on LDN research. Before I left I got an MRI, the first since 2004. I announced at the conference the MRI report stated: "No changes since 2004".

Dec 2008 Update: Got my copy of the The Promise of Low Dose Naltrexone Therapy from the printer! Elaine Moore and I hope the compiled research information and interviews with the leading LDN investigators will help propel research into this promising therapy.

Jan 2010 Update: My condition worsened in the second half of 2008, exacerbated by fever; I had to go back to using a cane. Things got much worse in 2009, and by June I wasn't leaving the house anymore. 9/15/09 I heard about the Zamboni trial for CCSVI, treating jugular stenosis as a cause of MS. On 10/29/09 I had stents placed in my collapsed jugulars at Stanford Medical Center. I am attempting to research the impact that LDN may have on the vascular system, perhaps this explains why so many have benefited from LDN therapy, although in my case it obviously reached a limit where it could not combat the blocked drainage from the brain. However, for those like me who have failed FDA approved MS therapies, or those who don't want to risk the side effects, LDN is still the best solution I have found.

Research is just beginning and there are many questions to be answered about CCSVI. I have started a new website to report developments, and on my own case history, including MRV scan images. Please visit HealingPowerNow.com

Aug 2004 - we had a great trip across the country & hiked Yellowstone - thanks to LDN!