Tim, Sorry this is so late in coming, but my computer has been down. I
wrote this about a year ago, and I continue to do great! Please feel free to
call(256-245-4627) or email me if you have more questions. Bill Roberts




My MS Experience
My name is William (Bill) Roberts; I am 57 years old, was diagnosed with
RRMS in 1998, and upgraded to Secondary Progressive in 2002. My chief
symptoms are (were) extreme mixed sleep apnea, COPD, inability to walk,
total deafness in my left ear, and inability to concentrate for any period
of time. I have been treated with Avonex, Copaxone, and Rebif of the ABCR
drugs, chemotherapy (Cytoxan, plasma exchange, as well as many, many
sessions of IV steroids (Solumedrol). As of June, 2005, I was on oxygen
24/7, wheelchair bound, having a flair of my MS on an average of once a
month, and doctors had told me that my breathing difficulties, caused by the
MS, would ultimately result in my demise. I had also ballooned in weight to
289 pounds. Two of the top neurologists in Birmingham consulted and agreed
that, while continuing on Rebif, I should begin taking a week of IV steroids
every three months, regardless of my condition. I did not feel that the
steroids were offering enough positive results any longer, and I did not
want to take any more. I asked if they would mind my getting an alternate
opinion from another neurologist. They agreed.
My new neurologist reran all of the standard MS tests, including MRIs. After
studying the results, she suggested I stay on the Rebif and see what the
next two months showed with regard to flares or episodes, then to probably
go back on chemotherapy. I asked her, at that time, if she would prescribe a
drug LDN (Low Dose Naltrexone), 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.
I began, around the first of July, 2005, with 1.5 Mg per day for the first
week, then increased to 3.0 Mg from then, on. I also stopped taking the
Rebif at that time. While I did not notice any improvement for the first
three months, I also had NO flares either. 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, then actually walked to the bathroom without assistance! My sleep
began to improve, as well. Improvement continued and actually increased, so
that when I went for my six month check-up with my neurologist, I did not
even take my cane, and I blew away my neurologist 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. In April, after my wife was diagnosed
as a borderline diabetic, I walked in a “Walk For Diabetes.” I walked just
over 21/2 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. Now,
I plan to spend the summer building a fence in our back yard and
re-landscaping it.
LDN is NOT a cure for MS. I still have it, and I still have issues with it
that I have to deal with everyday, but I attribute my miraculous improvement
to LDN, attitude, faith, and my new neurologist's willingness to prescribe
LDN for me. 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.
Pharmaceutical companies need to be able to make a profit off of the drugs
they develop through their research. The cost of such research is very
high, and LDN, a very inexpensive medication, 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. .
Websites- http://www.lowdosenaltrexone.org and http://www.ldners.org

Thank you. Sincerely,
William (Bill) Roberts



>From: "Tim Purcell" <jsbam2003@...>
>Reply-To: LDN_Users@yahoogroups.com
>To: LDN_Users@yahoogroups.com
>Subject: [LDN_Users] Your Help Neded
>Date: Sat, 03 Nov 2007 15:46:39 -0000
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>
>Sorry if you get this post several times, if you belong to different
>boards you just might, but I truly would like your help so please
>bear with me. 1st about me. In May of this year I was diagnosed with
>Clinically Isolated Syndrome, after an exasperation that left me
>walking with a cane. After all the standard MS tests I was found to
>have 8 separate lesions on my brain and spinal fluid consistent with
>MS, but because I could not remember (at the time) any other odd
>past problems this had to be considered my first attack and the
>diagnosis had to be CIS and not MS, until I had a separate attack. I
>have since had new symptoms in the last few weeks (and remembered
>some old ones) and am fairly sure the diagnosis will become MS when
>I visit my Neurologist next. I started on Avonex in July and think
>maybe that the attack I have been having in the last few weeks has
>not been as bad as it might have been because of the Avonex. So like
>everyone else I have been on the internet as much as possible since
>then and that has led me to you LDN folks. It took me a while to
>actually start investigating LDN because there are just too many
>snake oil salesmen out there and unless you dig a little deeper, on
>the surface LDN seems to fit into that category. The only reason I
>eventfully started my investigation was because I found out that
>know body was trying to sell me anything. Now that you know where I
>am coming from, I would like to ask a few of you, actually the more
>the better, to give me some direct information. I have been trying
>to find stories from LDN users that have been successfully using LDN
>for many years and have also been under a Doctors care for that
>time. I know the stories are out there but one gets very dizzy
>trying to find all the sites or old posts that store your stories.
>If at all possible I would like to have a data base of sorts with
>personal stories of long term LDN users that have had great success
>that can be verified by their doctor. I am going to my Dr in a
>little over a month and I want to have a talk with him about LDN,
>but I really want it be as informed as possible. Also, if by chance
>any of you have discussed LDN with my doctor, Dr Victor Rivera at he
>Maxine Mesinger Multiple Sclerosis Clinic in Houston Texas, I would
>also like to know how that went. Please, any and all long term
>success stories are welcome; I have a friend with cancer of the
>esophagus and I would love to get him to at least look at LDN and do
>some investigations of his own. Please send these to me via my
>private email address so it does not clutter up the board, unless
>you want to share your stories once again with the masses.
>Thank You in Advance
>Tim Purcell
>
>

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