Crystal's MS,Transverse Myelitis and LDN Website

"LDN may well be the most important therapeutic breakthrough in over fifty years. 
It provides a new method of medical treatment by mobilizing the natural defenses of 
one's own immune system." — David Gluck, MD

 
 
 
"Until There's A Cure...
There's LDN"
 
 
 
 
What Others Are Saying About LDN
 
From the LDN Website
 
 
 
 
 
 I have been on LDN for 7 weeks now, and I have a lot 
of improvements, stronger right foot, numb butt is 
MUCH better, burning nerve pain much improved, 
less stiffness, can withstand heat much more, better 
sleep, good energy level.  I have one problem and that 
is muscle cramping.  From the second week on, it seems 
to have just increased so I am at 3.0 and thinking 
of going lower to see if it subsides.  I read a post where 
someone said another person on this site increased 
their spasm medication and upped the LDN.  I may 
resort to that.  
I even went back through some old posts (up to 2004)
and found a lot of people with this problem, even people 
getting cramping/spasms when they had none before.  
So I just need to find a solution to the cramping.  I've 
tried quinine pills, calcium/mag., etc. and I may go back 
on baclofen.  I stopped it after two weeks because my 
stiffness was so improved.
I too have good and bad days.  Hope you improve.  
I think I even read (?) it can take up 6 most 
to a year to be sure the progression has stopped. 
Sincerely, 
Annette
 
 
I was diagnosed with MS in February of 1967.  
It was dormant for 20 years and then I slowly 
went downhill every year.  I refused the ABC 
drugs and the Novantrone and finally found 
LDN and started taking it August 1, 2005.  I 
have experienced subtle noticeable changes 
recently so do not be discouraged and do not 
expect to dance the “quick step” anytime soon.  
I can also tell you that everyone in my office 
had the flu this winter except me.
 
Bob
 
 
 For me it has been very helpful to have a 
searchable copy of all the messages on this 
website for archival purposes and to be able 
to seek out answers as questions come up. 
On the yahoo website, the messages can be 
searched but I find the interface bothersome 
and slow. If it is worth anything, I have 
downloaded all of the messages and put them 
into a database. 
 
I hope all seeking answers on LDN find them. 
I am thankful for this email group in my life. 
The knowledge and insight shared by so many 
has enriched me. LDN rocks. I have had no 
impact from symptoms of MS since last June 
when I started.
 
Nathan
 
 
 Good Morning
I have been on LDN 4.5 mg for a year and 1/2. 
I have seen wonderful progress and relief from 
it. I have developed stomach problems about 
the last 6 months. It seems that I cannot tolerate 
milk products. I was just wondering if anyone else 
has experienced anything like this. 
Thank you for you time!
 
 
Hi!
So far I have noticed increased energy and 
flexibility, and increased DREAMS!!! I really 
have only been on it for 1 month so not a whole 
lot to say just yet. I did start at 4.5 and it made 
me, weird? SO I went down to 3.0 and have 
been fine on it since. 
Peace and Blessings
~*~ Akiba ~*~
Pragmatic Visionary 
 http://yodamamma.blogspot.com/
  
 
I've been taking LDN since December 
2004, the same month I was diagnosed 
with MS.  I'm not the longest, but probably 
close to it.  I am definitely better than I was 
a year ago--less bladder urgency, a little 
more energy, less Spacticity.  I attribute the 
bladder thing to LDN, but the rest of it is 
probably due to the supplements I take that 
are recommended by Dr. Lawrence (including 
glyconutrients).  It is important to remember 
that not everyone experiences symptom 
relief on LDN.  The primary reason to take it 
is to prevent MS from progressing.
 
Carrie
 
 
 Hi everyone,

Quick update, I started 1.5 mg on Thursday 
at 9:00 pm had a great sleep, no bad dreams 
no side effects that I could feel or see and this 
is true for all 3 days and nights.  I did notice 
increased energy and less bathroom visits.  
My husband noticed my hands are not shaking 
as bad and the stiffness in my legs seems to have 
eased up a bit. Not bad for only being on it for 3 
days at such a low dosage.  I'm looking forward 
to moving up to 3 mg in a months time to see 
what it will do.  
I'll keep you posted and would love to hear from 
anyone out there in LDN land. 

One happy camper!

Nancy from Calgary
 
 
Hello - There seems to be Spacticity related 
to LDN.  I just wanted to say, since being on 
LDN; I no longer have Spacticity in my legs, 
which was a daily occurrence for at least 6 yrs, 
probably more.  
Susan  
 
 
My husband Paul started having symptoms 
for MS in September of 2004.  His first 
symptom was pain in his neck area.  Other 
symptoms that quickly followed were fatigue, 
bladder frequency, numbness and tingling in 
a few areas of his body, and he was having 
problems with small and large motor skills 
(he could not use the screw driver or shoot 
basket balls).  He also had become very 
depressed.
 
In early December of 2004 Paul started 
taking 4.5 mg of LDN.  The day after his 
first dosage he went to work and did not 
come home half day for the first time in 
over 2 months, his fatigue was gone.  Within 
the first week his bladder frequency was gone.  
Within 4-5 weeks he could use the screw 
driver and he could shoot and make basket 
balls again.  The only problem Paul had was 
that in the first week of taking LDN we had 
to lower his dosage to 3.0mg because he had 
a few new areas of numbness and tingling.  
Once the dosage was lowered those 
areas went away and have never come back.  
 
His overall feeling of well being seemed to 
be much better throughout the day, 
however he was still very depressed in 
the mornings.  Since October we had tried 
everything from different types of anti-
depressant medications, counseling, 
physiologist, and hypnotherapy but nothing 
seemed to work.  Then in February of 2005 
he started taking DL-phenylalanine.  The 
day he started that product his depression was 
gone.  He has never been depressed since.  
 
It is now May of 2006 and Paul is still doing 
great.  He plays one to two sports a day, surfing, 
basket ball, tennis and sometimes golf.  He also 
altered his diet in February of 2005 to exclude 
wheat, and dairy and he has been taking a lot of 
supplements since October of 2004. 
 
We are both very grateful for LDN and for
 DL-phenylalanine, and all of the support 
from the LDN-Yahoo chat site.  
 
Thanks, Aletha 
 
 
 RRMS per the doc.  No more cane, no 
more wheelchair. Balance muchbetter, 
better...ahem...uh...(bladder control) 
blush, much less brain fog,burning 
sensations there, but most of the time 
very 'faint' unless I'm out in the heat.  
2 1/2 - 3 year migraine..gone.  Stabbing 
pains, gone,vision better(less double 
vision), dizziness pretty much gone. 
Some of the above and other symptoms 
do make a return appearance, but are
very mild in comparison to pre-ldn...
memory could be better, but now at least 
I have one...(I think?)  
 
scrape...drag drag...stumble...must get 
back to cave before midnite...
 
C.C.   
 
 
 I've had non-descript arthritis starting 
10-15 years ago.  I've been taking LDN 
since Oct. 2005 as a preventative and 
because I'm hypothyroid.  I've had a 
noticeable, though not substantial, 
improvement in joint flexibility and 
easing of pain.
 
I was DXd in March 2005 with RRMS. 
I started on Copaxone April,  2005. 
I had one reaction to a Copaxone injection 
that lasted about 5 minutes but scared 
the sh** out of me.
 
I've been taking 4.5mg LDN liquid 
(from MEDMEX pill) since February 
5, 2006. I can't get a doc to Rx it. 
After one week I noticed an increase 
in energy, fewer balance problems and 
a general overall good feeling. I also had 
several "Bumps" in my left hand and 
fingers from RA. These are completely 
gone! I no longer have painful thighs in 
the morning when I rise.I had occasional 
vivid dreams the first two weeks but that 
has since subsided. I have had NO negative 
side effects. I am an LDN supporter. I 
ceased my Copaxone injections May 1, 2006. 
I feel so much better since I stopped it. 
Now all I ahve to wait for is A CURE! 
 
Ed Rojewski
 
 
Hi Crystal,
Here's mine.  I am a 47 year old male 
who had exacerbations at 31 years old 
that were misdiagnosed.  I wasn't 
officially diagnosed until a year and 
a half ago when I went from doing 
whitewater trips (as a guide) to not 
even being capable of crutching around.  
I digressed continually for the next year 
and a half while taking Avonex and 
aleve.  The day after starting LDN, I 
mowed the lawn.  I couldn't even walk 
on the lawn due to it's uneven surface 
prior to that.  Since then I have seen 
daily improvements including better 
heat tolerance,  more stamina and far 
better balance.  I just worked two 12 
hour days in a row with no side effects.  
After only three weeks on LDN, life is 
much rosier. I have become a local 
advocate for LDN and would recommend 
it to anyone who has MS.  I am very pissed 
at the medical community for letting this 
obviously effective treatment 
anguish due to a lack of study. I plan to 
make a lot of noise and now I have the 
energy to do so!!
Cheers,
Roy
 
 LarryLDN Testimony -
 http://p086.ezboard.com/fldnlowdosenaltrexonefrm8.showMessage?topicID=4.topic
 
Hi!  I have chronic progressive MS and 
diagnosedRheumatoid Arthritis too by 
LDN prescribing GP when heasked to 
see my hand.  He said my RA "Not Active"
--Dr.John Bohlman asked for blood and 
X-Ray confirmation of diagnosis.  
Both MS and MS NOT ACTIVE.  Yet same
doctor said felt sure my chronic diarrhea 
due to LDN. Skip changed my LDN to 
liquid to test for allergy to Avicel.  
VOILA!  No more diarrhea!  My prescribing
doctor wanted me to switch to a CRABS!  
And for my RA?My nephew does 
Echocardiogram and teaches doctors for
college credit.  He has cynical disgust for 
greed of doctors.  LDN stops RA.  
Best, Shirley
 
 
My name is Artie. In April 1988 I had a 
neurological attack that put me in the 
hospital for ten days. I could not see or 
walk straight and my face and leg was 
numb. I was totally screwed up. The 
doctors didn't know what was wrong 
with me and I was very scared. After 
doing many tests they felt I had what 
seemed to be multiple sclerosis and put 
me on high doses of solumedrol and 
prednisone and let me go home. It felt 
weird leaving the hospital still feeling 
very sick. I lingered at home for two 
weeks never getting off the sofa. My 
girlfriend at the time took me to see 
a neurologist who is considered an expert 
in MS. After doing some office tests he 
decided it was too soon to call what I had 
MS so he called it a brainstem dysfunction 
of unknown origin. I went home and lingered 
for another two weeks and then started to 
go downhill. It was then I was readmitted 
into the hospital where I stayed for almost 
one month. 
They had me on solumedrol and prednisone 
and did more tests, one of them being a 
spinal tap which I had twice. The last one 
gave me a terrible headache and I wanted 
to die I was in so much pain. The doctors 
ordered me to lay flat in bed for five days. 
The headache eventually went away. I 
slowly got better and was released where 
I went home to recover. In 1990 the 
neurologist declared a definite diagnosis 
of multiple sclerosis. Many of my symptoms 
gradually went away and I felt fine until 1994 
when they came back. My mistake back
 then was not staying under a doctor’s care 
and I continued to smoke cigarettes. Cuts 
off oxygen to the brain. In 1996 I was 
put on Avonex and self injected for three 
years. A very tough shot to yourself and 
the side-effects were very unpleasant. My 
symptoms worsened and a blood test was 
preformed on me where it was determined 
I had developed antibodies against interferon. 
I was taken off Avonex and put on Copaxone 
which I took for three years also self injecting 
myself. A piece of cake compared to Avonex. 
My health went up and down never really feeling 
great. In the summer time I was always in the 
neurologist office getting solumedrol iv's and 
prednisone taper offs. My bones have paid the 
price. I tried five doses of Novantrone with the 
hope of arresting the MS progression. Terrible 
side-effects so I quit taking the stuff. Long term 
effects are even worse. My walking became terrible 
and much fatigue. The neurologist told me the 
Copaxone is not holding you steady so we'll have to 
consider something else...like Betaseron! I said I 
thought interferon drugs are ineffective on me?!! 
He said well there isn't much else we can try. 
It was then I realized how helpless doctors are 
treating MS. They are only experimenting on me. 
I was practically in tears. His nurse was kind 
enough to suggest LDN and I've been using it 
since March 2005. My walking and eyesight is 
not perfect but I have not had any desire to go 
back to the neurologist for iv steroids which is 
a miracle for me. I'll _never_ use the CRAB 
drugs again and wouldn't recommend them to 
anyone with MS. LDN, supplements, diet, 
exercise and living as healthy as you 
can is what I do. By the way my last cigarette 
was June 1993. I have left out parts of my 
story and I am not a professional writer but 
this is what I have to say.
 
Good health to you. 
 
 
Hi Crystal!
I’m Javier and I live in Pamplona, Spain. 
I was diagnosed in January 2004 
with SPMS. At that time my EDSS 
(Expanded Disability Status Scale) was 1.5, 
and my MSFC (Multiple Sclerosis Function 
Composite) 1.51. In spite of these low 
numbers, I felt that my general condition 
was deteriorating weekly. 
In April 2004 I started LDN. I don’t 
remember any adverse effects. After a few 
days, my mood significantly improved, and 
my fatigue was much better. In three months, 
my EDSS decreased to 1.0, and my MSFC to 
0.72. No relevant S100b protein in the blood. 
This is still maintained today, my last exacerbation 
was November 2003. 
In June 2004, I was asked to moderate a Spanish 
LDN forum within the Balearic MS Association 
forum (http://miarroba.com/foros/ver.php?id=197831). 
Since then, with help from many people, we have 
information about LDN in Spanish within the forum.
In Spain, MS sufferers have increased their interest 
in LDN, but at the moment GP’s and neurologists are 
not prescribing it. So those who are taking LDN 
obtain it themselves. 
Keep in touch. Bye for now
Javier
 
 
Yes, Dr. Bihari has several Type 1 diabetes 
patients who have benefited from LDN.  
Our 18 year old son with Type 1 has been 
on LDN since March of 2005.  It's difficult 
to say that the LDN he takes is the reason he 
has not progressed over that time period, as 
from the time of his diagnosis closing on 4 
years ago, he has been in what's called the 
'honeymoon' period, still at a low level of 
insulin need.  We just hope the LDN keeps 
him in the honeymoon.  Typically, the 
honeymoon only lasts from 2 months to 2 years.