"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...
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.
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.
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.
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!
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 ~*~
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.
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,
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
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.
RRMS per the doc. No more cane, no
more wheelchair. Balance muchbetter,
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...
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, ?.
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!
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!!
LarryLDN Testimony -
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.
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
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.
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
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
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.
He did experience vivid dreams for about
10 days when he started with the LDN,
otherwise, there were no side effects.
I would certainly recommend it for your
friend's daughter. Perhaps they would want
to get a phone appointment with Dr. Bihari
to get an initial recommendation
on dosage, which is what we did.
Hi Crystal…..Don’t think you have my story.
It was written a few years ago but there is
nothing new. I went through and tried to
update where appropriate. Sorry it took
so long but I had forgotten and just saw
your reminder post.
Oh Boy, where to begin? I’m going to
have to try and make this shorter
because it is a long story. I will begin
by saying that my first indication that
something was wrong came in 1989 when
I had a problem with my left eye. There
was a blind spot that would never go away.
I remembered that I had one in my right eye
maybe about 4 years before that and was
told that there was nothing to be found at
that time. This time me Ophthalmologist
said that the only thing he could see was
some inflammation of the optic nerve. I
thought…whew…dodged another bullet
there and took some of the literature that
he gave me. It was called Optic Neuritis.
Hmmmmm I being the inquisitive one went
home and started to look through my medical
journals. The doc had scheduled me for some
additional tests but never mentioned why. I
started doing my research and when I saw
what was listed as a probable cause for the
Optic Neuritis, I swear, the world stood still
for just a brief time…..
Multiple Sclerosis. I had read it several times
before it sunk in that it was a possibility.
I called the doctor back and asked him point
blank if he was scheduling those tests for me
to test for MS and he said yes. I was floored
and couldn’t understand why he never said a
word in his office. I now know that back then
when there were no medications or anything
for MS. Their standard M.O. was to just send
the patient away and hope that it never returns.
After all why scare the be Jesus out of someone
for nothing, right? Well I had given this a lot
of thought at the time and asked him if he
diagnosed me with MS, could he cure me?
Of course I knew the answer. He said no so
I told him to please cancel any further tests.
What was the point of having a diagnosis
I thought? Ruin my chances of getting future
employment……Future insurance? My thought
was simply to go on with my life and do the best
I could until a cure came along. My blind spot
disappeared on its own and I was not impaired
I decided that my life would go on as usual.
Well this after a full week of crying of course.
I could not believe that I had this horrible
disease where you never quite know what is
coming. I decided to continue going to the health
No reason at that point to give up those
wonderful aerobic classes. My philosophy is
that there is always someone worse off then
you. I was in great physical shape in early 1930’s.
In 1997 I bought this computer because I felt
that it would be a good thing to hook up with others
and to stay connected to a support group. I could
never quite figure out why I was doing so well and
others were not. We even met a group of these
people in Vegas about 5 yrs ago and most were
walking with canes. I almost felt guilty that I had
no permanent damage. Well about 5 yrs ago when
we moved is when I kind of started to slack
off of the exercise classes. I stayed active riding
my bike but nothing like what I used to do and
started to notice myself declining. By that I mean
that I started to notice that my balance was
suffering and my legs would get numb for months
and now I just can’t walk for long distances before
my leg muscles get fatigued.
I was also experiencing a lot of strange eye
symptoms. About 3 years ago I said to myself…..
self…..it’s time to look into one of those injectable
drugs that they say could slow down the progression.
I went back to my support group and started
asking questions about what else people were using.
I kind of fought the use of these drugs because I
often wondered what was worse. What are the side
effects from injecting these substances into you
once, twice, daily some of them are.
I was not too happy to be thinking about it but
just thought that the time had come.
Well someone mentioned something to me that
sounded weird….something called LDN. Now
MS is very notorious for scams so you just kind
of listen and make your own evaluations based
on your gut. He sent me to www.lowdosenaltrexone.org.
I started researching it and thought….hmmm this
certainly has the backing of what I consider
intelligent people so I thought….maybe…I
kept looking into it and everything about it
screamed at me that this was legitimate.
There is a Dr New York that had been
experimenting with the use of a low dose
of this drug for HIV and now autoimmune
diseases. He just gave an interview on a New
York radio station that I got a copy of and
is now on a site for listening online. His theory
is that when you take Naltrexone at a much
lower dose of 4.5 mg as opposed to the FDA
approved 50 mg where it blocks endorphins;
the lower dose fools the body into producing
200% to 300% more endorphins. This in
turn regulates the immune system back to
normal working condition. Therefore once
you start taking the LDN once a day there
should be no further progression of the MS.
LDN is good for lots of things like Parkinson’s
and Systematic Lupus, ALS and all other
autoimmune disorders. Now mind you, the
injectable drugs claim that they will help about
30% of the people 30% of the time.
The LDN is supposed to have a 98% effective
rate. Now what do you think about those
odds? Well the LDN has never been clinically
tested for this purpose because there is no
hope for a patent on it. It’s been in use for
about 20 yrs now. What Pharmaceutical
Company is going to want to throw millions
at a drug with no payback? An orphan drug
essentially. There is certainly a groundswell
of us taking it and one day it may make it
to the daylight but who knows. Those drug
companies are a formidable advisory; they
make billions on the injectables annually.
I’m sure you know how all that works, it’s a
money game. Well I searched for a Neurologist
that would help me by prescribing the LDN and
they wouldn’t have anything to do with it. Their
money was on those “Approved MS Drugs”.
They would not go outside the box as it were.
I did not take no for an answer and found
myself the most wonderful Endocrinologist
who is now prescribing it for other MS patients
with great success. I hope to never see another
Neurologist again and don’t need one now. Oh
boy this is becoming a book…..
Still awake??? Oh and one more thing, I finally
realized why I was doing so well all those years
with my aerobics. I was producing all kinds of
Endorphins with that and when I started slacking
on the exercises is when I started to progress. I’ve
been on the LDN for about 4 years now, having
started in May of 2002 and so far so good.
In 2 days, I will be moving up to 3mg after
30 days on 1.5mg. Depending on how I
tolerate, Skip's Pharmacy will fill either
4.5mg or stay on 3mg after that.
I am feeling pretty darn good. I am
also on long term antibiotics and antifungals
because turns out I have an active and long
time staph infection. Based on how I'm
feeling after being antibiotics for several
weeks, such as being able to walk unassisted,
I'm begin to think there is more to this infection
driven reason that my MS took such a progressive
course so quickly.
Julie L in NC
Hi everyone, I'm going on 3 weeks at 3mg
and have noticed my fatigue is gone.
We just had 2 days of hot weather and I
was able to go shopping (with the help
of a shopping cart) through Costco, Home
Depot and Walmart all within a 3 hour window.
It seems the more I walked the easier it got. I
couldn't have done this prior to taking LDN I
just didn't have the energy. I've also noticed
bathroom visits have decreased. I'm still very
pleased with starting LDN and I am curious
as to what will happen when I increase to 4.5mg.
Because 3mg. has already been very beneficial.
I'm still feeling achy with sore muscles so I take
Advil every 4 hours and it seems to take the edge
off. I'm urging and encouraging everyone to stay
on the band wagon with their updates and keep
this LDN train going because knowledge is power
and we could all use a little of that. I've met a
wonderful couple in Calgary through Brenda's
LDN Forum who helped make our world a little
We all have to share information; it helps one
another so much. Have a great weekend.
Notes on my experience with LDN
When we moved into this area I had just
had a two week stay in a hospital resulting
in me being on a concoction of drugs including
very high dose morphine which was certainly
turning me into a zombie and probably was
killing me. I had rejected the option of having
my spine cut chemically. None of the drug
treatments dealt in any meaningful way with
the severe back pain resulting from the
interaction of MS spasms with a separate
A local GP helped me go against written
advice of a neurologist and back surgeon to
wean off their prescribed drugs and achieve some
improvement with one of the now infamous
Cox2 Inhibitor drugs.
This left me again in my right mind although
still with serious back pain. I trawled for hours
on the web to try and find some solution.
I eventually discovered LDN and took some
time to persuade David to research it as over
the years we had looked at several “miracle”
cures/treatments for MS. The only one we had
tried was the Carrie Loder protocol, which I
found to be totally ineffective.
I then persuaded my GP to write a private
prescription for LDN in May 2004. Within four
days my life changed completely. Having had
difficulty traveling to locally in the car and being
virtually housebound, I could travel freely.
It took us about six months to get the dose of LDN
right and find an alternative solution for my back
problem (by initially using electronic pain control
and the finding magnets to be more effective).
Since sorting out the use of the correct dose of LDN
for me and resolving the back pain by separate
mechanisms I have had NO further progression
of MS. I have managed to reverse my condition
to a considerable extent by the use of other immune
system boosting techniques.
In summary therefore, LDN and magnets have
replaced a horrifying concoction of dangerous
drugs that had turned me into a zombie and
might have killed me by now. No doctor is now
suggesting I submit to having my spine chemically
My results with LDN seem to be typical of at least
90% of those 200,000 or so who are currently
For the newly diagnosed, LDN is very nearly a complete
solution to MS.
I have been diagnosed with Secondary
Progressive MS. My first onset
was at 18 years of age with double vision.
Now is some 30 years later.
I have been in a wheelchair for about 5
years now. I still work full time and carry
on pretty much as normally as possible (driving,
shopping, etc) as long as there aren't stairways.
I could not tolerate the CRAB drugs (I won't go
there). Anyway, I started LDN 5 months ago
at 3.0 mg. I was beginning to lose dexterity in
my right hand. This would have been a real
problem as typing is a mainstay of my job.
I am pleased to say that using LDN reversed
that trend. I can even "flip people off" again,
a gesture I was only able to do with my left hand
for several months.
This brings up a point. The benefits of this
treatment are probably measured in small
but significant changes. Here were mine
after 3 weeks. I tried to stay very objective
and note all changes, even those that didn't
seem to be MS related:
Increased Right Hand dexterity (to almost
Less numbness in feet
Improved mental attitude, concentration
Increased strength and balance
Improved complexion (I have rosacia)
Improved continence (dramatic improvement)
Fewer episodes of constipation
Reduced appetite (feeling full trigger seemed to
happen earlier in a meal)
Less facial hair growth (I'm female so this is good)
Protruding eyes have diminished
Now at 5 months all of the above have remained
Increased strength and balance
I am going to call my doctor and ask for a 4.5 mg
script for my next rx. to see if the two I lost will
come back. I am very hopeful about this treatment.
Good health to all.
My name is Kortney; I am a 29 year old
woman with Relapsing Remitting MS. I
was diagnosed in March of 2003 although
I had symptoms all the way through college.
When I was first diagnosed I had optical
neuritis in both eyes as well as several other
problems. My first year with MS I took Rebif
however I did not tolerate it very well. I
changed neurologists and the new one put
me on Avonex. The side effects from the
Avonex were a nightmare but I tolerated it
because my neurologist told me that was the
best thing for me. Even on the Avonex my MRI’s
every year always showed signs of progression.
I also have consistently had to do steroids every two
months in order to function enough to work. I teach
elementary school music and my students need me
to stay on my toes. I get vertigo so bad I need to
hang on to a wall to walk. In January a good friend
discovered LDN and made a point to email me the
information and then call me and tell me about it.
I was a little bit skeptical because they also told me
Avonex was the best thing for me. I was also
skeptical because anyone with MS knows that
friends and family are always trying to help and
telling you about these amazing things that help
people with MS, except it’s always garbage.
However my friend’s enthusiasm about LDN was
contagious. I spent a couple of months researching
LDN and the more I researched the more optimistic
I was about trying it. I talked to my family doctor and
he spent a couple of weeks researching it and then
was happy to prescribe it for me. I have been on LDN
for a little over two months. For the first little while I
was having a lot of transient symptoms and I was not
feeling well at all.
The last couple of weeks all of the symptoms have gone
away and I feel a lot better. My bladder problems have
not disappeared but they have improved. I have a lot
more energy, I can teach a full day of school and come
home and do other things. I used to be so tired I would
go to bed really early. I have also passed the 2 month
mark without having to do steroids. I recently went to
the eye doctor and although the prescription for my
contacts has gotten worse my visual acuity has improved.
I have heard that it takes six months for the LDN to
fully kick in. I am feeling so good right now I can’t
wait to see how I am feeling in 4 months. I cannot
express how grateful I am that my friend told me about
LDN and how happy I am to be off of the avonex and away
from the side effects.
I am Julie and I am 44 and a single mom
of a 5 yr rapidly improving autistic
child. Definitely diagnosed with MS in
2004 and started on Avonex then
Copaxone then Avonex and none did
well and lesion load has been continuous
per MRI’s done quarterly. Been on best bet
MS diet and doing well and working on healing
gut issues for 2 years. Went on a search to get
LDN and found doc finally in my area who
would prescribe. I am now 30 days into my
trial on 1.5mg from Skip’s Pharmacy. I have
noticed the following:
- Stopped baclofen altogether 2 weeks ago
-amazing dreams after none that I can recall in
- had cold (bad) within about 10 days of starting
LDN, first cold/bronchitis in 2 decades. Is my
immune system going normal?
-legs stronger, seem to be in a remission of sorts.
Have had no remission lasting longer than a
week ever since diagnosis…but walking normally.
Still taking steps to rest at times
-working with physical therapist and a month
ago was in a walker and now working out with
blue therabands and 5 lb weights
-Moving to 3mg on Tuesday. Plan is to be on
new dose for 30 days and then move to 4.5mg
-When can I take my scooter lift off my car?
Do I really need this thing? LOL…I feel so good.
Diagnosis: Progressive chronic relapsing MS,
Behcet’s Disease, hypothyroid (on armour
and levoxyl), other autoimmune issues not
attributed to other diseases, general very poor
health for past 5 years but starting to feel really
good. Disabled and on SSDI.
My Spacticity has reduced significantly and I
have actually stopped baclofen altogether.
As part of my protocol, they also put me on
long term antibiotics and antifungals to
address infectious cause for my illness,
changed my levoxyl to levoxyl plus Armour
to address continued hypothyroidism, mild
silver 400ppm but taking 1600ppm dose
of that and numerous other supplements,
eating healthfully +probiotics ect….
I am a 48-year-old female and was diagnosed
with MS in December of 2004.
I started having symptoms in March of 2004
with optic neuritis affecting my left eye. I had
experienced weakness in my legs, arms, flushing
in my back and dizziness. In the next year after
being on one of the traditional MS drugs I did
very well it seemed. However, in December of
2005 after a very busy week and being very
fatigued I experienced the right side of my body
going completely numb with my left leg trying to
follow in its path. I still walked, but limped around
for a couple of months.
After having another set of MRI's my neurologists
discovered I had a lesion on my back. That didn't
I figured it was time for a change as far as my
medicine and as things worked out, a friend
of mine was having a hard time as well. My
friend told me about "low dose Naltrexone".
I thought okay I would study this and come
to my own conclusions. As everyone should
do. In a time period of 4 months studying
LDN, and finding a doctor that would prescribe
the LDN, I am now taking it.
No more welts and bruises from shots.
But it wasn't about the shots. It was about a
better way, in my opinion. And, my gosh, I
use to bounce off the walls; I was so hyper
on the injections. Everyone told me that!
I didn't realize it until now myself. No more!
I have been on LDN for almost 2 months
now and after the first day, I no longer
had the urgency to run to the bathroom.
The optic neuritis...well I have total faith it
too will get better. I tolerate heat better now
also. I went on a trip and experienced total
exhaustion and wasn't sure if another bad
flare-up was on the way.... my fatigue leading
up to my side going numb in December, was
nothing compared to what I was going through
from this trip. Guess what? No flare-up.
I slept and all is well. I strongly believe the
LDN protected me. I have only been on LDN
for about 2 months...it takes 6 to get the full
affect...so only greater things will happen!
LDN isn't a cure, but someday there will be,
but for now, it is my path.
My belief is, this is my body, my fight, my
MS...so I had to give LDN a try and it has
been absolutely great so far! Oh yea, and no
nasty side affects either.
Like flu symptoms, or liver damage. Not
to mention the many others. I am so relieved
and at peace about stepping out and giving the
LDN a chance to work. Also, my sister has MS....
she is doing fabulous on the LDN!
Continued Healing to All,
Paul Nicholas Singer
Yesterday was LDN breakthrough for me.
I went to my Neuro (which I have not been
to before my attack this Jan. Last time I saw
him, I could barely walk because of extreme
muscle stiffness due to side effects of shot,
I had extreme bladder issues, I was dizzy,
I had bad balance and uncontrollable anxiety.
This visit, I had no dizziness, complete control
over bladder, no anxiety, good balance-my only
complaint was the weak leg muscles (which I’m
working on since my attack) 1st I told him that I
had stopped the ABC drugs 6 months ago, they
I told him that I saw Dr. Bihari in NYC and gave
him a fast background on LDN. I told him I
started it Feb 1.
He examined me, and was shaking his head,
he could not believe that Iwas able to keep my
balance, my legs and arms were not stiff, -last
time I was there he told me how stiff I was.
He then was twisting my ankle to try to make
it kick back like it was 6 months ago,,,but the
LDN got rid of the spasticity that I had. He
could not believe how calm I was. All the things
that I had made me think my MS was getting so
much worse and it was mostly side effects. He
said, there is no way to argue this. What you
are doing appears to be working, "I was afraid
to give out LDN to some patients who asked for it"
he said, but I seemed to be living proof.
Paul Nicholas (Singer) - www.paulnicholasonline.com
My 24-month update was due on the 23rd of
June; however, I will also include pre-LDN
and how LDN has helped me to this point.
After a second opinion, I was diagnosed with
Relapsing-Remitting MS in October 2001.
I was not affected by MS symptoms, at that
time, except for a slight slur in my speech
that came and went periodically. After
diagnosis, I started Avonex in January of
2002. While I was on Avonex for two years,
I was fairly symptom free except for the day
after my shot in which I was wiped out and
in bed. After being on Avonex for two years,
my health began to deteriorate significantly
causing me to loose my job in January of
2004. I stopped driving and was wheelchair
bound in February of that same year. Some
of my symptoms included: deteriorating vision
which caused me to be declared legally blind,
chronic fatigue, poor balance, bladder urgency
and frequency, severe muscle spasms and
foggy brain. Because of the serious decline in
my health and functioning, my doctor took me
off Avonex and put me on Rebif which I started
in April 2004. At this same time, my doctor left the
practice and I was transferred to a new doctor.
In April 2004, I began to search the Internet
because I wanted to find what others were doing
for MS symptoms with success. The first
information I found involved individuals with
MS who used bee stings as treatment in Florida.
Not only was the treatment too far, but their
success rate was questionable. Next, I found
information on a drug called Low Dose Naltrexone
(LDN). When I asked my new doctor about it,
her only word was "no". I had read enough
information to cause me to find a doctor who
would say, "Yes". In early June of 2004, I found a
doctor who did a phone consultation and prescribed
On June 23, 2004, I took my very first dose of
LDN and was out of my wheelchair three days
later. While gaining strength in my legs
because of being confined to the wheelchair
for 5 months, I used the walls for balance to
get from one room to the next. I could not
support myself very long so I could not stand
in the kitchen and cook meals. I ate a lot of
frozen meals cooked in the microwave during
my symptom improvement. As time passed,
my energy level boosted and I genuinely felt
well for the first time in two years.
Also, my walking gradually improved to the
point where I only needed a cane outside.
Most of my other symptoms improved within
months except for my eyesight and bladder
During 2005, I started water aerobics to continue
my strength building. Additionally, at home I
was using the Total Trainer and an exercise bike
three times a week. I also noticed that my eyesight
was improving. I went to an eye specialist in
December who examined me and found that I
was no longer "legally blind", and was cleared to
drive during daylight hours.
Since December of 2005, I have started
physical therapy two times a week as a
support to my other treatment. I believe
all of my improvements are directly a result
of using LDN religiously. I will continue to
use it until someone finds a cure for MS.
Today I awoke and did not feel dizzy ALL
DAY LONG! I was still having balance
problems, but no dizziness. Quality
Assurance insisted I try some of the
triggering mechanisms, like sugar and
some chocolate -- and no dizziness.
I wonder why that happened? It was the
best day of my MS life in more than two
My energy level has also increased.
I went on a wild shopping trip,which
I will describe in an O/T thread later.
Maybe another sign from God: I left
my cane at the supermarket. I'm sure
someone will turn it in and I'll be able to
retrieve it. But I had to unload all the
groceries in a pouring rain sans cane and
it was no problem. It was fun.
No fatigue at all today. Last night I
awoke again at around 4am and
was up for an hour, fell back to sleep
and awoke at 8:30am. Was on the go
all day long and didn't even think of a
nap until after I returned from shopping.
What new wonders will LDN gift me with
tomorrow? It just keeps getting better
NOW for some good news, I took my
first pill last night and WOW! I haven't
slept this good in a long time. When I
went to roll over, it was so much easier.
My legs were not stiff. My back felt like
it did b/4 all this started up 6 years ago.
Getting up during the early morning hours
to go to the toilet was so much easier.
The pain was so much less, because the
stiffness was so much less. All I could do
was to thank and praise God. Also, here
lately, my left hand was closing up like a fist,
but an hour after taking the medicine my
hand relaxed and is still relaxed! I am
excited to see what will be happening in
the future weeks to come. (Of course I
was disappointed that I couldn't do a cartwheel,
but I got over it!!!) So, I don't have to tell you
what this has done to elevate my hope and faith!
Thank you. Barb
My before LDN & after LDN story
Post by Brenda on Mar 12, 2004, 6:13pm
My story before I started LDN & after I
I was one of the lucky people to have
symptom improvement w/LDN. Not
everyone will see symptom improvement
but hopefully will see a halt in progression
My MS story before LDN
I've had progressive MS since 1989 what
they call now days as Progressive-Relapsing.
(Progressive-relapsing MS is a clinical course
of MS that shows disease progression from
the beginning, but with clear, acute relapses,
with or without full recovery from those
relapses along the way).
It is suspected that I've had MS as early as age
9 years old. I had the symptoms but they
were thought to be growing pains.
I'm skipping the years MS should have
been looked for in me...ages 9 through
25. I had the symptoms for that long. It
took paralyzing myself to get a diagnosis.
Years later I tested borderline positive for
lupus and then again later I tested positive
twice for lupus, homogenous pattern. My
neurologist had always suspicioned I had
a second autoimmune system disease to go
along with the MS and lupus it is. Dec. 1989,
age 26. I was in horrible pain in my muscles &
some of the pain felt like it was inside my bones.
I had massive lassitude fatigue, double & blurry
vision, massive migraines, petit-mal seizures,
severe forgetfulness. Both feet felt like they
had stone bruises. The doctors were not
finding anything wrong. I decided one December
day to soak in a warm tub of water to relieve
my pain. I had 3 days off work so I thought I'd
really get this pain to go away during these days
off. I soaked that night in a warm tub of water
and went to bed. I awoke paralyzed on my entire
left side. That landed me in the hospital and
my MS diagnosis came. WHAT A RELIEF!!
I wasn't going crazy afterall. My type of MS
attack is extremely rare. Explanation below.
Typed from a book that explained my form of
CEREBRAL ATTACK: (Falling in a 3 Percent
incidence rate of ever occurring).
This occurrence comes with a very rare MS
attack known as the CEREBRAL ATTACK.
The symptoms come on like those of a stroke
and include memory loss, seizures known
as absence seizures, which are short confusional
seizures; also known as petit-mal seizures. One
sided visual field loss, paralysis of the face,
arm and leg on one side, Lassitude fatigue,
loss of speech expression or comprehension
(aphasia). I managed to regain the use of my
left side again but was left with significant
weakness on the left side. The doctors told me
to file for disability immediately that I would
not be able to continue to work, that my MS
would only get worse as time passed. I was
diagnosed chronic progressive MS as it was
called back then, now chronic progressive MS
is called Progressive/Relapsing. I refused to file
for disability and returned to work in January
1990. In February 1990 I had an Optic Neuritis
attack of the left eye. Had to be away from work.
I recovered with a major visual loss in the left
eye, 20/180. I returned to work. I had another
attack on my right side in March 1990. My right
arm and head/neck. I couldn't hold my head
up on my own. I had to lay it against something...
went through IV steroids for many months and
I got to where I could hold my head up on my own
I can still feel the weakness and fatigue in my
neck muscles even today. I had to quit my job
April 1990 and moved home with my parents.
1993 or 1994 I went through years of
intravenous steroids, ACTH every 4 months,
I had had paralysis of my torso and couldn't
hold myself up so needed a mobility scooter
with a lumbar support seat that tilted backwards
slightly. Spasticity has steadily increased over
the years. I was born spastic in all 4 extremeties
and spasticity has only increased as years passed.
Fatigue has been horrendous. My muscles
from the so called MS Hug(I call it the MS Torture
Chamber) were so knotted & drawn that when felt
by the human hand it felt like bone, not muscle. My
vision slightly improved in my left eye to 20/160 on
steroids. I have had migraines so bad that I've had to
be knocked out in the ER. I've had to use a cane,
a wheelchair and then a scooter. I refused Betaseron
when it became available. By the time Betaseron
came around I needed symptom relief more than
I did anything else, plus Beta was not for my type
of MS. The side effects of Beta didn't sound too
awful good either. I tried Provigil and it was a flop.
About 8 years ago I started taking numerous supplements.
My ophthalmologist is also an alternative medicine
doctor. He gave me trigger point injections into
my stomach, ribs, back & neck muscles & my scalp
& temples using Procaine & Sodium Bicarbonate.
A temporary fix of pain but not fatigue. I've done cool
water and slightly warm water pool therapy off & on
during the past 8 years. Warm water need not be
over 87 degrees(30.5 celcius) in winter in an indoor
pool facility. My mom would do massages on me.
Oh, MS has left me 100% deaf in my right ear. It has
actually done eardrum damage. It has left me
moderately deaf in my left ear. I have mild to
moderate lymphoedema everywhere I have had
paralysis and that's approx. 90% of my body.
In 2003 I had viral pneumonia for the entire
month of March and 3 weeks into April. It put
my MS symptoms at rock bottom. I was considering
Copaxone, I.V. Steroids and Botox injections into
my muscles and the possibility of a morphine pump.
I had heard of LDN for at least 3 years but had been
I was finally to the point of no return with this
knock down I'd just been given. I knew that
none of the ABCR & N drugs would make me
feel better. It's well known that these drugs do
nothing for symptom relief and that's what I
desperately needed most. I was experiencing a
fatigue & pain that had me couch and bedridden.
I needed Superman!!
July 2003 I decided LDN was going to be
my next try before the Botox injections
or steroids. LDN was my Superman. I started
LDN in July 2003. It is suspiscioned by my
alternative medicine doc that my MS that was
moderate before 1989 was triggered by my
having a severe bout of cat scratch fever in
1983 causing the already existing undiagnosed
MS to become chronic progressive. My symptoms
got much worse and I developed new symptoms
rapidly after the cat scratch fever incident.I had
several symptoms to die down overnight on
4.5mg LDN with lactose filler. My first to be
noticeably reduced was the horrendous MS hug,
I had reduction in frequency of trips to the toilet
at night and my fatigue reduced a bit.
LDN user 2 yrs/July 11, 03 to
July 11, 05 and still continuing
on the LDN at 4.5mg with lactose
filler from Cantrell Drug Co in Little
Rock, Arkansas...they use Pure Naltrexone
Powder. My 14 straight year progressive MS
has been halted dead in its tracks on 4.5mg
of LDN for 2 years now. I haven't needed
my mobility scooter in 2 years but LDN did
not do this by itself, I had to do my part...
see below on "NOTE" that will explain. I
never took the CRAB drugs or Novantrone
aka chemo and I believe that played a huge
role in my success on LDN. By the time I
got diagnosed(dx'd) at age 26, I was dx'd
chronic progressive. I'm 42 now.
LDN reduced my MS hug pain a good 60%,
improved my bladder control, improved my
vision slightly in a 6 month span. My fatigue
25%. My migraines halted, in about a 6
month span LDN corrected my many
years of suffering insomnia. Tremors in
my hands slightly improved.
LDN could not help my slurred speech
nor my hearing loss or the muscle damage
from past paralysis.
NOTE!! LDN didn't do it all, I had to do my
part too to stay ambulatory once I could get
out of that scooter, like exercise my behind
off in the pool. I was doing pool therapy
before LDN but after I started LDN I took
full advantage of the reduced fatigue and
reduced pain LDN gave me and I went GUNG_HO
on the pool exercising...6 days a week in pool,
no less than two hours each session for 1 year.
I've reduced that time due to the YMCA being a
50 mile 80.4672 km) drive one way and fuel
prices being so high but I still do pool therapy
as often as I can.I do a sensible diet. I don't have
high blood pressure (never have had) nor high
cholesterol. I don't drink alcohol nor have I ever
smoked or done illegal drugs in my 42 years of life.
I try to stay as candida free as possible, I have
started eating 100% organic foods. I try to avoid
second-hand smoke as it is toxic and it is a strong
migraine trigger for me so I avoid smokers.
I'm currently getting Lymphatic Drainage Massage
for my hard lymph nodes.
All of my lymph nodes are as hard as rocks. This
possibly a result of the past cat scratch fever/disease.
The disease still runs in my bloodstream.
Hopefully over time the Lymphatic Drainage
Massage will help my health even more.
NOTICE: I forgot to mention that the episode
in Dec. 1998 wiped out all of my mathematics
skills from my memory. I hadn't a clue as to
after that exacerbation. I had taken Algebra I
and II in high school and Geometry and then
College Algebra in college and all that and grade
school mathematic skills were gone in one single
exacerbation. It took years of playing games that
required addition and subtraction to regain some
of my math skills.
I struggle horribly even today in this area.
When it came time to pay my bills after that initial
exacerbation I was horrified at the realization of the
severity of damage I had sustained from that one
episode. My mom had to take over my checking
account until I re-learned enough math skills to
take over on my own again.
I have now been on 4.5mg LDN with lactose filler
for what is nearing 3 years come July 2006. I have
had minor flare-ups of old symptoms like pain
increasing when I've over-taxed myself or get the
slightest bit stressed or angry.
I do not panic over these things as I know this will
happen from timeto time and that the LDN is still
working. My initial adverse side effects of starting
LDN were numb hands for 3 weeks, that subsided
and has not returned. LDN caused extra stiffness in
the backs of my legs for 3 months and that too faded
and the extra stiffness has not re-surfaced. My
Progressive/Relapsing MS has been in remission
since starting LDN. The batteries on my mobility
scooter are dead as I have not needed that scooter
in nearly 3 years. That scooter has become just
an old bad memory. I enjoy life now, I no longer
dread each new day.
May & June 2006...I have recently switched my
diet from low carb to Professor Celene Bernstein's
(book Health Seekers) detox diet and now maintenance
program. I have started to see a slight bit less spasticity
with Celene's way of eating. July 11th, 2006 is my 3
year anniversary on LDN. I am still no longer
progressing. I have had fevers from time to time
from ear infections caused by hearing aid and some
of my old symptoms will get aggravated but they
will die back down when fever dies down.I still have
much permanent damage to muscles that were
paralyzed in years past, I still suffer from a great deal
of fatigue, I still have lots of spasticity and stiffness and
muscle tightness and am still deaf in one ear and have
much hearing loss in the other ear and still have
esophageal spasticity and still have moderate MS
hug in my torso and I have some pain. But the pain,
fatigue, MS hug is not as horrendous as they were
prior to LDN.
Monday August 14, 2006
I had an eruption of the MS hug on Monday.
A very harsh weather pattern here stirred things
up, I suffered through it and all is better now. I
didn't panic and run for steroids, I knew once
the weather cleared that my negative symptoms
would subside and they have.
Post by Brenda
Well, I wish I could say the same. I Started
LDN 3.5 month ago. I took Avonex before
that. I hated Avonex. It was hard dealing
with the side effects. I took Avonex for 1.5 years.
In that time I only developed 1new lesion, and I
experienced no further progression, that I know
of. But like I said, the side effects were
I started LDN @ 3.0 MG. It took my body
2 weeks for me to get used to the LDN.
I experienced a lot of stiffness and numbness
during those 1st 2 weeks, but that's normal.
Most people experience some increase in MS
symptoms during the 1st 2 weeks or so. After
the 2 weeks were over I felt great! I was on cloud
9. No side effects and I could run a
Then after 30 days I upped my dose
to 4.5 MG. Big mistake! After 3
days on 4.5 I developed double vision.
I stayed on 4.5 for the next couple
of days but my vision only got worse,
so I decided to drop back down to 3
MG. My vision eventually straightened
itself out. It took about two weeks to
do so. I stayed at 3.0 MG from then on
until this past Friday. During that
time I felt normal.
No side effect and no problems.
Then about a week and half ago I took
my vacation and during my vacation I
worked on my living room. I only had
a week to get it done so I worked 12
hours days so I could finish it on time.
While working on the room I felt great,
no problems at all. 3 Days after finishing
the room I started to develop some numbness
in my feet, then the next day it spread to
my hands and mid section, then it started
to spread to my back side.
I decided to stay at 3.0 MG for a few
days to see if the numbness would get
any better. When it didn't I decided
to increase my dose to 4.5. That was
The numbness is just about gone in my
feet. But 2 of my fingers on my right
hand are still numb, the same 2
fingers are also slightly numb on my
left hand and my chest is still a bit
numb as well, but it seems to be going
away. I hope so anyway. What's weird
is the numbness seems to be worse in the
morning and it slowly fades as the day
progresses. Then it's full force when
I wake up the next day, but never as
bad as the day before.
It's hard to say why this has happened. A lot of
people have told me that I pushed myself
too much to get the room done.
They are probably right. The problem
I have is that this has never happened
to me before. I've never had to worry
about working too hard. So the big
question is, is this a sign of progression,
or is this just the LDN working. It's
hard to say. I also haven't called the
Dr. I don't usually call him unless I
absolutely have too. But, this could all
just be my body still getting used to the LDN.
Would I do it all over again? Absolutely!
I hope this helps.
All The Best,
I have been on LDN since Sept.02, and have
had a complete turn around in my M.S. I was
dx. with RRMS in 99, and spent 3 yrs. trying
Avonex, Copaxone, and Beta Seron, with no
success. I was relapsing every few months, which
left me walking with a cane. During that time,
my life had changed dramatically, not only health
wise, but in my personal life. Hubby decided he
couldn't handle my illness, and divorced me...
after burning our home to the ground. It was 2
months later that I started LDN. I truly believe
that had it not been for the LDN, with all the
stress and drama occurring during that time
of "starting completely over" I would have declined
But...I got results, with no side effects, almost
immediately. I no longer use my cane, and was
able to do a 6.2 mile MS Walk!! I still have my
days, every so often, I DO still have MS, and have
to pace myself in my every day, but I have not
gone into a relapse since starting LDN. My MRI's
have shown results as well. I was also dx.
with Breast Cancer last Feb. and I truly believe
that LDN kept the tumor from growing into a
nightmare. I know, not every drug works the
same for everyone, but starting LDN and getting
off the toxic injectables, and the handfuls of pills
I was on before, was the VERY best thing I could
have ever done for myself. Always keep 2 things in
You are in control of your own body, no one knows
it better than you! Stay positive.....
Each and Every Day. A healthy mind makes for a
I wish you the best, in whatever decision you make,
for that is what is best for You.
"Until There's A Cure...
When I was officially dx'd with
MS three years ago it explained
the weakness and stiffnessin my
right leg that I had been told
over and over was due to my
periformus muscle being strangled
by my butt muscle. Muscles relaxers
of any type would not help. Then
of course after the dx everything
was blamed on MS.Now since I started
LDN 6 months ago, it stopped all my
bladder problems, which have been
severe since I was 18 (again no
one knew why), No more nite trips
to the bathroom. Yeah! If I don't
exercise I will get the stiffness
in my right leg and just like it
was mentioned below I won't bend my
right leg if I don't concentrate
on it.So when I walk, I always think
to myself ("heel-toe"-heel-toe")
this helps me to remember to bend
the knee. I also have no pain, but
it sure can/does trip me up and make
me fall real hard unexpectedly LOL!
(I know it's not funny).I did notice however that, afterstarting LDN symptoms I used tohave came back and then went awayas if I was having MS symptoms inreverse. I can tell you whatsymptom I am going to have next,going backwards.The numbness of my right rib cagestarted four years ago for twomonths then stopped. Then I hadright lower leg numbness for 2months then it stopped. When Istarted LDN I had right lower legnumbness the first three days of mysecond week then it left and thennumbness of the right rib cage thesecond week of the second month andthen that left.So I started looking at my old notesand sure enoughmy symptoms are goingbackwards.Now I have pain in the rightleg (it's my 2nd week of my 6th month)and that is what I had 6 years ago.So I am definitely experiencing MSsymptoms in reverse. I'm not toohappy though since the worst is yetto come.If my symptoms continue inreverse, I'm going to lose the sightin my right eye for 2 weeks (in 3months)and have a terrible relapsethat will last for 6 1/2 weeks (inFeb of 07) and I'll be unable towalk, focus, or move my right arm.I work a fulltime job, I'm singleand live alone.Just thinking ofeverything I went through in the pastscares the hell out me now.Hopefullythe LDN won't let the terribleexasperation happen.Come to think of it when that happenedin 2000, they told me I had labrythinitus?After all that mess I just typed, LDN isworking fabulous for me. I've never feltbetter! I wish everyone felt the effectsI have had.Sincerely,JuiceLDN works for my wife, but I do notthink you should overly worry about ifLDN is working for you as long as youhave no hard evidence that it is not,when I did my original research for mywife 3 years ago I was unable to findanyone for whom LDN had not worked. Iwas very worried at that time aboutgoing against conventional wisdomand boosting the immune system andbasically trying to find anyone whohad been harmed by LDN and again foundno one. In the last 3 years the numbersusing have massively increased so thatis absolutely bound to increase thenumber who find it does not work forthem, and of course they will form adisproportionately high number of messageon such message boards by trying tofind out why their result is notgood , since those for whom it workswill in general get back to living.So why does it not work for some -well I doubt there is a single answerbut I will suggest a fewpossibilities.1 In general most thing do not workfor everyone so there probably afew that do everything right genuinelyhave MS and it does not work for them.2. Misdiagnosis - we know most peopleultimately diagnosed with Lymes diseasewere originally diagnosed with MS andwe know that LDN is not a very effectivetreatment for Lyme. There is no absolutediagnosis test for MS so misdiagnosis isa fact of life and there are many thingsthat could be falsely diagnosed as MS,some may respond to LDN some may not.Since no one is deliberately misdiagnosingpeople any guess at a misdiagnosis rate mustbe just that. If I found LDN did not workI would defiantly consider misdiagnosis.3. Combining LDN with other drugs thatsuppress the immune system. Many drugsdo deal with the symptoms of illness bysuppressing the Immune system, somesymptoms we get when ill are related tothe immune system correctly fight theillness and some drugs do address symptomsthis way.4 LDN can be very dose critical for someand maybe some are not careful enough aboutthis issue. For My wife 2.8Mg works wellbut 4.5 Mg was a disaster much worse thatdoing nothing at all.4 High stress events. LDN can be overridden if you have an event that stressesyou out too much. Illness has a way ofcausing such event to be more frequent.5 Expectations for LDN too high. The highpercentage success rate with LDN is stoppingdisease progress, yes a smaller percentageget some symptom improvement but failureof LDN should only be considered if you getdisease progress and can not account for inany other way than failure of LDN to workfor you. Everyone reports the miracles theyhave with a treatments and that does not makethem untrue but neither does that make themthe norm that everyone can expect.David TaylorI only have terminal cancer, not MS,but I can tell the effects of LDN,especially on my arthritis. So, yesit works well for me.Bruce Guilmette, PhD
Hooray for LDN--it is working for me too.Six months on 3.0 and no progression eventhough my neuro diagnosed me as secondaryprogressive by the time they figured out itwas MS in 2004. And I had progressed veryrapidly in the last four years until Istarted LDN.Most of my symptoms improved or disappearedincluding eye problems, which were becomingvery troublesome to me because of my work.Only my walking has not improved and I usea walker or scooter to get around.And on my last visit the doctor felt thatmy legs were stronger and told me to stayon the LDN until our next visit in December.LDN is the only medication I take. Beforethat it was methotrexate, which did nothingpositive at all.So, I would say the LDN is definitely working,so far!JoyceGood day all:
The 4.0mg curse has been broken(I think; I hope) because in additionto the wonderful reversal of, again,unknown problems that would respond toLDN, (the floaters and the dribbling)I awoke this morning feeling wonderful.Not an ounce of crappy feelings to befound.YAHOO!!!!
Until further notice, there should benothing but positive words aflowingfrom these fingers. I didn't thinkthis was going to happen. Looks likethe best has come thru again with LDN.When the time to re-order for nextmonth's supply arrives next week, I'mgoing to stickwith 4.0.
Feelin' good in the neighborhood, I yam
DanToday is the 81st day on 4.0 and Istill feel as good, if not betterthanI did yesterday. Improvements in allareas except for cognitionand dizziness.Cog has improved slightly - tho hard toreally tell.Dizziness is mild unless Istrain myself.
Two nights ago I walked at a fasterthan usual pace, feeling weaknessin mykness throughout the walk. But my legmuscles felt fine. Untilyesterday whenI paid a visit to JBland. Felt miserableall day: weak,fatigued and cranky.
Woke up this am and felt even betterthan I did before my push duringthe walk.I guess I answered my own question.Don't try to work thru weakness.
After these amazing recoveries and theimprovement of my emotional well being,I'm going to stay at 4.0 for anothermonth and see what happens.
Just wanted to give you father's report on
the tiny 3-yr old girl who had 5 bloody stools
a day on steroids and facing more serious
medications - after 2 months on LDN 3mg
- Her BMs are now reduced to 1/day
- Blood is not visible.
- She is now completely tapered off
Prednisone andSulfasalazine and is much
less moodier and happy. Her appetite has
A happy report! Dr. JAQUELYN MCCANDLESS
I was VERY much wanting to start LDN,
my friends who also have MS have told me
good reports so asked my Dr. for it, He told
me there weren't enough 'studies' done on it
so he did not let me have it. I went back to
him a month later and asked again, having
done my 'homework' and printed out all the
info I had to hand to him, he said he does look
at the web site and does know all I had in
my hand, I told him I was going over his head
and going to another Dr who would give it to
me, he then said OK, it can't hurt and most
of the time it would be a placebo affect anyway
but I was willing to go that route if it did make me
feel better, it costs LESS than anything else I was
taking and did give me a script for it. I then
found I was no longer able to get the Wellbutrin
I had been on for years.
Guess what, I have NO feelings of depression, I
am sleeping well (if my dog lets me) and rest during
the day (if my granddaughters don't 'need' me)
Hooray for LDN.
Aug 17, 2007. I was smack dab
in the middle of a bad MS attack and if not
for LDN i dont know what kinda of shape i
would be in right now. I had not had a attack
this bad since 2000, had fallen 5 times in a 3
week period, balance was so bad i was leaning
to the left, leg muscles had gotten weak thus the
falls, hand strength bad. engery what was that,
i was in bed more than out until i started on LDN
i started at 1.5 mg for a week but once the weird dreams
were over i pushed it up to 3.0mg and almost immediatley
i was able to be up and not in bed i even had engery
again, no more falls, no longer leaning to the left,
balance restored. leg muscles still weak but have gone
into physical therapy to help with that as with the hand
strength. another plus did not have to go to the bathroom
at night as often and was no longer awake every hour for
the first time in over a month i was able to sleep 6 hrs
before i woke up and that was a huge blessing, pain
and spasms were now at bay and my engery level was
getting better every day. i know if not for LDN i would
not be up and out of bed let alone my engery level back
up, i am so thankful I had talked to a friend on LDN and
began taking LDN when i did, i helped me get back to
where i was before my MS attack and than
some. So thank you dear friend for telling me about
LDN and getting my life back.
I have used LDN exclusively for nearly 2 years.
I take 4.5 mg by the so-called "liquid" method.
One year ago an MRI showed that previously
active lesions throughout my brain were no longer
active. Also, I love LDN. Only perceived side effect is
increased hair growth (I have to shave more often).
Good luck with your newsletter.
I can only say that since LDN, nothing
has progressed MS-wise.
The first thing I noticed was more energy
and then no progression of symptoms.
My MS is light tho and I have been working
with a doc/naturopath who has been also
working on my energy and symptoms.
He wants me to get the Mercury out of my
mouth which I have half done.
So I'd say the LDN has definitely helped a
lot but then who knows exactly
how bad I had MS to begin with?
LDN certainly hasn't hurt me at all and
I figure if it is helping - yay!
My LDN Experience with Cancer as
of September 1, 2007
I'm a recent newcomer to LDN as my
last and only hopeof surviving my cervical
cancer metastatic to my lungs (Stage 4B).
Below is achronology of my experience
withLDN. As of
September 1, 2007, I still
feel fine now inmy 7th month on LDN.
Since my August 2007 CT scan showed
no significant growth of existing metastases
andno new growths, it appears that LDN
has stopped thecancer, and on my next scan
inNovember 2007, will know if LDN has also
had anysignificant effect on reducing the
October 28, 2005: Cervical biopsy -
Initialresults Moderately differentiated
(grade 2) invasive squamous cell carcinoma
of cervix. I was diagnosed with Cervical
Cancer (Adenosquamous Carcinomas)
and extremely aggressive.
November 4, 2005: Surgery -
Wertheim's total hysterectomy and
November 7, 2005: Pathology
Report - Poorly differentiated
adenosquamous cell carcinoma,
at least 4 cm in maximum extent
with prominent lymphatic permeation,
3 positive Lymph nodes.
November 8, 2005: PET SCAN - No
abnormal FDG uptake at the pelvic surgical
site or at the vaginal vault to suggest
residual tumor. No evidence of distant
metastasis to the brain, lungs, liver,
adrenal glands, and bone is found.
December 1, 2005: Began Concomitant
External Beam Radiotherapy (RT) with
Cisplatin Chemotherapy Treatments.
29 RT treatments over a period of 5 weeks,
plus an infusion of Cisplatin (5 Cyles,
one per week over 5 weeks). Finished
treatments in January 2006.
September 14, 2006PET Scan:
Detected a mildly hypermetabolic nodule
in latter part of anterior segment of Left
Upper Lope (LUL)...in right lung also 3 tiny
eumetabolic supbleural nodules. Not
January 29, 2007PET Scan: Comparison
September 14, 2006PET Scan,
confirmed metastases of 5 nodules, largest
one being 1.2 x 1.6 cm. Reclassified Cancer to
Metastatic, Stage IV-B. Scheduled CT scan for
Calculated Doubling Time of 33 days since
February 3, 2007CT Scan: Confirms
metastases of at least 13 nodules, largest
nodule being 1.3 cm. Doubling less than
30 days.Oncologist recommended palliative
treatment using TAXOL/CARBOPLATIN
chemotherapy and gave me 4 to 9 months
February 7, 2007: On recommendation
of a friend I contacted Dr. BIHARI. Dr.
Bihari faxed a prescription for 4.5 mg
LDN to Skip's Pharmacy in
and had Florida
it couriered to me. I started taking LDN
FEBRUARY 12, 2007
June 13, 2007LOW DOSE CT SCAN:
Increased growth of all previous metstatic
nodules, largest nodule now 2.0 cm, but
no further metastases detected. Calculated
Doubling Time of 70 days since last scan.
* August 1, 2007 LOW DOSE CT SCAN:
NO SIGNIFICANT GROWTH OF ALL
METASTATIC NODULES, LARGEST ONE
NOW 2.0 X 2.1 CM. LDN appears to have halted
the growth of largest nodule and stopped any
further metastases.Calculated Doubling Time
of 232 days since last scan.
Hi, everyone I am on 4.5ldn for 6ms and
have seen some help for my ms monster
#1 bowel improvement
#2 some vision improvement
#3 no more cold feet when its 80.
#4 can swallow food normal again
#6 bladder better
I am a male at a crisp 45 age, I have
some problems, walking and plan my
movements with my cane,? Why when
I take my 4.5 at 9 or 10pm my vision
gets even crisper, and then, weaker the
next day. Can I take more during the day,
for more relief?
Personally and a woman….I am on 4.5mg
starting LDN in Feb of 2006 with no relapses
in 13 months and MRI in past 2 months shows
no new lesions or enhanced activity. Previous
MRI Feb 2006 reflected many new lesions in previous
4 months. I have MS.
One of my personal friends and a man is
on LDN for fibromyalgia since Fall 2006.
He has been on 4.5mg since the original
ramp up with excellent results, markedly
less pain and arthritic inflammatory discomfort.
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