Update: See Vicki's video
interview interview
with Cyndi Lenz at the 2008 Annual LDN Conference.
I went to the doctor in 1996 complaining of some tingling and
numbness in my arms and legs. In 1998, after two years of
testing, I was finally given the diagnosis of Progressive
Relapsing MS. By then my symptoms had worsened: balance,
memory, speech, sensitivity to touch, spasms, extreme pain,
fatigue, bowel and bladder problems and various other
symptoms of MS had become my way of life.
My neurologist gave me information about some of the
different therapies in use for MS, and recommended Avonex. I
began the weekly injections, which brought on horrible side
effects of flu-like symptoms, fever and chills. I was also
on Neurontin, Baclofen, steroid infusions and a list of
other medications that would fill this whole page. Not to
mention two infusions of Tysabri before it was pulled from
the market in 2005, for causing a rare brain disease
resulting in death. My pain was unbearable throughout all of
my body, and I spent most of my time on the couch or in bed,
depressed and hating life.
I stayed on Avonex for the next six years, but continued
progressing at an alarming rate. Eventually my doctor
decided Avonex had run its course and changed my injections
to Copaxone. The side effects from the Copaxone eventually
ended me in the hospital. No longer able to tolerate
Copaxone, I moved on to Rebif, which turned me into a mental
monster, not only was I hating life and everyone around me,
but the progression and pain of my MS was becoming
unbearable. The last six years were spent on vicodin, up to
10-12 10 mg tablets a day. Because of the high dose required
to control my pain, the doctors thought it best to start
using a morphine patch. Turns out I was allergic to
morphine, so then it was on to oxycontin. I had to give up
my greatest passion, golf. I could not even ride in the cart
with my husband, the smallest of bumps would send even more
pain throughout my whole body. Before the second hole he had
to take me home, where I would go to bed and cry because I
no longer was able to endure such a simple task. It’s funny
how we take the simplest of daily tasks for granted.
In October 2005 my husband, the biggest skeptic of all, came
across a drug that he read about on the Internet called LDN
(Low Dose Naltrexone). After some diligent research on the
drug we decided that I had nothing to lose, and some of the
stories that we read from others who were on it were very
inspiring. After all the drugs I’d taken, could this tiny
pill be all it would take to stop the progression of my MS?
I had to try it. You can’t have any opiates in your system
when starting LDN, so I had to detox for two weeks. Those
were the hardest two weeks, horrible shakes, sweats, and
crawling skin. My only thought was this had better be worth
it!
I started on LDN October 2005 and felt improvement within
two days; my energy level was amazing. Still unsure of what
was to come I continued the LDN and kept my fingers crossed.
By then end of 6 months I was pain free, the numbness and
tingling were gone, my memory had improved, my balance and
walking were no longer a problem and other problems I had
developed were gone. I’m loving life again, my family,
friends and myself. I am no longer on any medications except
vitamins and my LDN. I am, after 9 years, no longer on an
anti-depressant. I’m truly happy I found LDN when I did;
another year and I would have had to use a walker, I was
loosing strength and the will to walk.
It’s now March 2008 and I haven’t been in the ER or at my
doctors every other month, I haven’t had an attack nor am I
on any other medications besides LDN. I am back playing
golf, my energy level is amazing, and I am no longer in the
horrific pain I once lived with. YES life truly is good once
again; I owe it all to LDN. I’m grateful to Dr. Zagon, for
his discovery and Dr. Bihari for having the interest in
reading the research and trying LDN with his patients.
September 2007 Update from Vicki’s Nurse Judy
"Nothing short of a miracle", is a phrase that aptly
describes my friend Vicki. Diagnosed in 1998 with MS, the
ensuing years have been physically challenging and mentally
devastating. Living with a chronic, debilitating disease
that over time eroded and completely changed the person she
was would be enough to make most people give up. But, Vicki
continued to hope SOMETHING could be found to help her.
After years of belief in standard medical treatments, even
in the face of continued deterioration, two yeas ago Vicki
made the very difficult decision and stopped all currently
approved medications. Years of horrible side effects had
taken their toll. She had heard about and investigated the
treatment of MS with low dose Naltrexone, which was being
used off label and seemed to be helping people with few or
no side effects. She asked my opinion. I’m her “nurse
friend”, an RN, and had in fact given her weekly shots for
five years and couldn’t deny the fact that she was much
worse than she’d ever been.
So, my advice was, why
not try what just might give you some quality of life. In the past two years
I have seen a transformation that really is a “miracle” of sorts. Vicki has
gone from a woman who lived with constant pain, usually couldn’t walk
without dragging her right leg, was exhausted, unfocused and at times
confused, to someone who is unstoppable! She is clear headed and articulate,
requires no pain medication, can walk miles and still have energy and has a
zest for life I last saw in her 11 years ago. She truly has found the self
she lost! Most recently she is considering going back to work, something
that was totally unthinkable two years ago. I cringe to even think where her
life and health would be today had she not started the Naltrexone. My prayer
for Vicki is for continued good health and many more years of all life has
to offer.
