By Denise SinclairHome staff writer
SYLACAUGA — The Fire Department is assisting a former firefighter and a nationwide group in raising funds to get trials under way for a new drug for multiple sclerosis.
The drug, Low Dose Naltrexone, has not yet been approved by the Federal Drug Administration for treatment for MS.
But former firefighter William Roberts knows how effective it is in treating MS. The drug has turned his life around in the past year, and his firefighter friends want to lend a hand in the effort to get trials started to have the drug approved for treatment of the disease.
The firefighters will be on hand collecting money at Wal-Mart on U.S. 280 in Sylacauga Friday beginning at 9 a.m. They may also hold the fundraiser Saturday.
Roberts, 57, was diagnosed with relapsing-remitting MS in 1998.
MS is thought to be an autoimmune disease that affects the central nervous system, which consists of the brain, spinal cord and the optic nerve. Surrounding and protecting the nerve fibers of the CNS is a fatty tissue called myelin, which helps the nerve fibers conduct impulses.
In MS, myelin is lost in multiple areas, leaving scar tissue called sclerosis. These damaged areas are also known as plaques or lesions. Sometimes the nerve fiber itself is damaged or broken.
Myelin not only protects nerve fibers, but makes their job possible. When myelin or the nerve fiber is destroyed or damaged, the ability of the nerves to conduct impulses to and from the brain is disrupted, and this produces the various symptoms of MS.
People with relapsing-remitting MS experience clearly defined flare-ups (also called relapses or attacks). These are episodes of acute worsening of neurologic function. They are followed by partial or complete recovery periods free of the disease progression.
In 2002, Roberts’ disease was upgraded to secondary-progressive MS. People with this type of MS experience an initial period of relapsing-remitting MS, followed by steadily worsening of the disease course with or without flare-ups, minor recoveries and plateaus.
His chief symptoms were extreme mixed sleep apnea, COPD, inability to walk, total deafness in his left ear, and inability to concentrate for any period of time.
Roberts has been treated with many drugs, including chemotherapy and IV steroids.
As of June 2005, Roberts was on oxygen seven days a week, 24 hours a day, wheelchair bound, having a flair-up of his MS an average of once a month, and doctors told him his breathing difficulties, caused by the MS, would ultimately result in his death.
“I also ballooned in weight to 289 pounds. Two of the top neurologists in Birmingham consulted and agreed that, while continuing on the drug Rebif, I should begin taking a week of IV steroids every three months, regardless of my condition,” Roberts said.
“I did not feel the steroids were offering enough positive results any longer, and I did not want to take them any more. I asked if they would mind my getting an alternate opinion from another neurologist. They agreed,” he said.
Roberts’ new neurologist re-ran all of the standard MS tests, including MRIs. After studying the results, she suggested Roberts stay on the Rebif and see what the next two months showed with regard to flares or episodes, then to probably go back to chemotherapy.
“I asked her at that time if she would prescribe a drug known as LDN for me. I had read a great deal about it and talked to a number of MS sufferers who had improved with the use of LDN, a medication that is FDA approved as a treatment for heroin addiction and alcoholism. She said she had never prescribed it but had also read a lot about it. She agreed to prescribe it,” he said.
Roberts began with 1.5 mg per day of the drug around the first of July 2005. He took this amount for a week, then increased it to 3 mgs from then on. He also stopped taking the Rebif at the time.
He did not notice any improvement for the first three months, but also had no flare-ups.
“Then, I began to notice that my breathing was improving. I could take time off from the oxygen for extended periods of time. The strength in my legs and arms was improving. I began to be able to take short walks with a walker, then longer walks, then changed to a cane, and actually walked to the bathroom without assistance,” Roberts said.
His sleep began to improve, as well.
Improvement continued and increased so that when he went for his six-month check-up with his neurologist, Roberts did not even take his cane.
“I blew away my doctor by acing all the tests. I am now driving again after four years, walking totally without assistance, and have dropped my weight down to 232 pounds. I hope to get back to my normal weight of 195 by year’s end,” he said.
In April, after his wife, Pam, was diagnosed as a borderline diabetic, Roberts walked in a “Walk for Diabetes.” He walked just over two and a half miles, with no assistance, beginning with the first group out and finishing with the first group in.
“I was both pleased and proud to accomplish something else I never thought I would be able to do again,” he said.
Roberts said that, while LDN is not a cure for MS and he still has the disease and issues that he must deal with each day, he attributes his miraculous improvement to LDN, attitude, faith and his new neurologist’s willingness to prescribe the drug for him.
“It is allowing me to do things I never thought I would be able to do again, and if it were to become an approved treatment for MS, it could not only possibly do the same for others that it has done for me, but it could also possibly free up millions of dollars that could be used to find the cause of diseases such as MS. Finding the cause for a disease brings researchers much closer to finding a true cure,” Roberts said.
He said pharmaceutical companies need to be able to make a profit off the drugs they develop through their research. The cost of such research, he said, is high, but LDN is an inexpensive medication.
“It will not produce the profits those companies need in order to warrant their doing the trials to get it approved for MS, as well as ALS, Alzheimer’s, Parkinson’s, AIDS, Crohn’s, many types of cancer, child autism and even Rheumatoid arthritis,” Roberts said.
“That is why the Sylacauga Fire Department has agreed to assist me and a nationwide group in raising funds we need to get trials under way that can lead to LDN’s FDA approval as a treatment for MS.”
The first annual LDN Conference was held in June 2005, Roberts said, and several of those attending decided to begin a fundraising effort in the United States to further research into the effectiveness of LDN for MS.
The plan is to collect $20,000 as “seed money” to do research to determine why the drug has shown so many positive results in MS patients.
The Accelerated Cure Project for MS, a nonprofit organization, has offered to receive, hold and disburse the funds on behalf of the LDN for MS Research Fund, Roberts said. All funds will be held in a separate account, and refunded to donors should the trial not be launched.
Roberts said to learn more about LDN, visit the Web site: http://www.lowdosenaltrexone.org and to learn more about the nonprofit fund for trials for LDN, visit: http://www.ldners.org.
