MS dx 1995, FDA MS meds failed (Copaxone, Avocex, Novantrone). The only medication that helped symptoms and slowed progression was Low Dose Naltrexone starting 2004, see http://LDNers.org
. Oct 2009 I had stent placement for jugular stenosis or CCSVI, see http://healingpowernow.com
Low Dose Naltrexone saved my life
My name is SammyJo, diagnosed with MS in 1995 at age 30. In 2002 the disease had progressed to "secondary progressive MS" and I had to give up my technology career. At that point, after 20 years in Seattle my husband and I moved back to Texas where my family was, everybody thought I wasn't going to survive much longer.
Years of MS injection drugs hadn't helped - Copaxone, Avonex, buckets of IV steroids. Even a year of Novantrone chemo failed to stop progression. In fact I had to stop the chemo early because it was damaging my heart, and the chemo just left me even weaker, had to start using a cane.
December of 2003 I was at the end of my rope. Falling so often that the $10,000 motorized wheelchair was on order. So I took one more troll on the Internet, which had always been a disappointment when it came to MS info. Either scams to take advantage of desperate people, or medical research promising new treatments, someday in the far distant future. But this time I found something different, talk in discussion forums of a drug called "Low Dose Naltrexone", LDN. Other MS patients were reporting amazing improvements. And it was a just a 4.5 mg pill, not a needle! I was skeptical, but it was a Harvard trained neurologist, Dr. Bihari, who had published his clinical success treating patients with LDN. So I kept reading, including the work of Dr. Ian Zagon at Penn State who published studies on "opiod growth factor" triggered by opiate antagonists like naltrexone. But the most convincing data was the stories from other LDN users shared in online forums. Still it took me about 2 months to decide it was a low risk experiment worth a try. But my neurologist at University of Texas MS Center said he'd never heard of it and wouldn't prescribe, so I found an MD that would give me a script anyway.
Feburary 2004 I took my first 4.5 mg capsule. I woke in amazement 8 hours later, because it was the first time in years I had slept straight through the night, without leg spasms, or having to get up 4-5 times to go to the bathroom. My husband was so used to the disturbance that he didn't sleep a wink, worried that I was so still!
I watched my symptoms and strength carefully, afraid to get my hopes up, but by 4 weeks it was clear my energy was picking up, because I could stand at the stove long enough to cook breakfast. At 6 weeks it was clear things had improved, because I quit using my cane. I went for an appointment with the neurologist, and my husband Doug mischievously set him up. "Doc, what's the chances Sam will be able to avoid the wheelchair and walk without her cane". "Don't count on it" was the answer. Then I laid down the cane and walked down the hall, while my doc watched with disbelief. Then Doug said "What's the chances she could jump again?" The doctor was getting suspicious at this point, but he said "I've never seen a secondary progressive patient achieve significant recovery." At which point I jumped off the ground, and told him I'd started LDN. A broad smile broke over his face, and he whipped out his prescription pad and said "How do you spell that, I'll write the script!"
As spring progressed my recovery did as well, and in March we celebrated with a several hundred mile road trip to Big Bend National Park. The previous Texas summer I spent huddled in front of the air conditioner, afraid to go outside; MS patients just fall apart in the heat. But after LDN I found my heat tolerance had increased, and I was able to pull weeds in the garden at 85 degrees.
Online I was becoming one of the amazing anecdotes, advising others. But I was frustrated by the lack of research. An MD friend, Dr. Glen Gordon, encouraged me to put my computer skills to use and launch my own research effort. I demurred, who would pay attention to a non-scientist? He told me "Sam, when the n becomes large enough, it's no longer anecdotal, it's epidemiologic data." I began a conversation with another MD, Dr. Yash Agrawal, who would later publish the first hypothesis of how LDN affects MS. He helped me design the questions to rate the effect of LDN on MS, I put the survey online at www.LDNers.org, and encouraged others using LDN for MS to answer. Soon I had 267 respondants. Having answers to the same questions across a large group allowed for statistical analysis, with exciting results:
Very low relapse rate of 0.2, or 1 in 5 years
70% report symptom improvement
45% think progression has stopped
76% say LDN is working for them, & will continue therapy
Since this was self-selected reporting I cautioned everyone it was not to be construed as unbiased science, but it was still important because it pointed to the fact that this medication was making a difference, way beyond the usual placebo factor of 30%.
Dr. Bihari's partner, Dr Gluck, arranged the first LDN conference in New York City in the Spring of 2005, and asked me to speak on the Advocates panel and present my survey information. At the conference we met scientists interested in LDN, and many of the online friends I'd developed in the LDN community. Rob Lester, a volunteer with the Accelerated Cure Project for MS (ACP), reported on the interview he did with Dr Agrawal following publication of his paper, ‘Low dose naltrexone therapy in multiple sclerosis'. Rob introduced me to Art Mellor, CEO of Accelerated Cure Project for MS. We formed a committee, along with Dr Agrawal, to determine a way to initiate a research trial. All of us felt passionately about this, and knew that those who had benefited from this drug did too, so we decided to ask the LDN community's help to fund LDN research. Drs Bihari and Gluck endorsed our efforts, and contributed the attendance fees from the 2nd LDN conference. Dr Lenz, of Skip's Pharmacy, added a message to all his LDN prescription receipts urging his customers to donate.
"LDNers" responded to our call, funds began to accumulate, then others joined the fund raising effort. Shannon Doherty, whose mom had gained relief from MS with LDN, raised funds by hiking the Colorado Trail. Bill Roberts, a former firefighter who found LDN helped his MS, joined the cause and "passed the fireman's boot" to raise funds. Then I was contacted by Vicki Finlayson. LDN had allowed her to get off pain medications, which were incapacitating her as much as the screaming pain she suffered from MS. She was now pan free, and organized a gala benefit at her country club in Auburn California for the LDN Research Fund and ACP. Vicki and I told our LDN stories to the gathering of over 200. We were joined by another LDN advocate, Mary Bradley, author of ‘Up The Creek With a Paddle", about LDN helping her husband's progressive MS stabilize, as well as her Uncle's Parkinsons This benefit raised over 2/3 of the fund, and brought us to a total of $25,00. Now all we needed was a researcher! Upon my return to Seattle, I was contacted by a man with MS who had been at Vicki's fund raiser. He told me he had just been to see his neurologist at the MS Center of University of California, San Francisco, and they were planning to do a human study of LDN for MS. I immediately called UCSF to get the details, and reported it to the LDN Fund committee. We were all excited that such a respected research institution had decided to investigate LDN for MS, and agreed they should receive the funds. We sent them the check year end 2006.
Patients raising funds for a specific research topic may be a new novelty in medical science. But having started as a grassroots, word of mouth remedy passed from one MS patient to the next via emails and forum posts, it seems fitting that LDN made it to the research clinic via a grassroots fund raising effort as well. I am glad to have been a part of the effort to make this medication a standard of care for all who suffer from MS, and all the other ailments this wonder drug could end up helping.