Crystal's MS,TM & LDN Website

Helping Others and Finding A Cure!!!!!!

 

 "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, ?.

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.

 

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.

 

Kathie 

 


 

 

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

at all.

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

club.

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.

JoyceF   

 


 

 

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

smaller.

We all have to share information; it helps one
another so much.  Have a great weekend.
Nancy

 


 

 

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

back problem.

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

cut.

My results with LDN seem to be typical of at least

90% of those 200,000 or so who are currently

using it. 

For the newly diagnosed, LDN is very nearly a complete

solution to MS.

Janet Taylor

 


 

 

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

normal strength)
Less numbness in feet
Improved mental attitude, concentration

and stamina
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)
Vivid dreaming
Protruding eyes have diminished

Now at 5 months all of the above have remained

except:

Improved complexion
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.

 

Kortney

 


 

 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

decades

- 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

if tolerated.

-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….

[email protected]

 Julie

 


 

 

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

surprise me. 

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, 

Donna Richardson

 


 

 

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

 


 

 

Hi All,

 

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

LDN.   

 

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

urgency. 

 

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.

 

Scott

 


 

Hi all, 

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

years. YIPPEE!!!

 

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

and better.

 

Dan

 

 
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

started LDN.

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

w/LDN.


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

MS attack.

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

again.

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

skeptical.

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.


After LDN

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 
reduced approx. 
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 
what 0+0=? 
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 
awful.  
 
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 
marathon.
 
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 
last Friday.  
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.  
Who knows?
 
Would I do it all over again?  Absolutely!  
 
I hope this helps.
 
All The Best,
 
Jason
 

 
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 
immensely.  
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 
mind..... 
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 
Healthy body!
 I wish you the best, in whatever decision you make, 
for that is what is best for You.
 Be well
  Carol :)
"Until There's A Cure...
There's LDN"
 

 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, after 
starting LDN symptoms I used to 
have came back and then went away 
as if I was having MS symptoms in 
reverse. I can tell you what 
symptom I am going to have next, 
going backwards.  
The numbness of my right rib cage 
started four years ago for two 
months then stopped.  Then I had 
right lower leg numbness for 2 
months then it stopped.  When I 
started LDN I had right lower leg 
numbness the first three days of my 
second week then it left and then 
numbness of the right rib cage the 
second week of the second month and 
then that left.
So I started looking at my old notes 
and sure enoughmy symptoms are going 
backwards.Now I have pain in the right 
leg (it's my 2nd week of my 6th month) 
and that is what I had 6 years ago.  
So I am definitely experiencing MS 
symptoms in reverse.  I'm not too 
happy though since the worst is yet 
to come.If my symptoms continue in 
reverse, I'm going to lose the sight 
in my right eye for 2 weeks (in 3 
months)and have a terrible relapse 
that will last for 6 1/2 weeks (in 
Feb of 07) and I'll be unable to 
walk, focus, or move my right arm.  
I work a fulltime job, I'm single 
and live alone.Just thinking of 
everything I went through in the past 
scares the hell out me now.Hopefully 
the LDN won't let the terrible 
exasperation happen.  
Come to think of it when that happened
in 2000, they told me I had labrythinitus?  
After all that mess I just typed, LDN is 
working fabulous for me. I've never felt 
better! I wish everyone felt the effects 
I have had.
Sincerely,
Juice 
 

 
LDN works for my wife, but I do not 
think you should overly worry about if 
LDN is working for you as long as you 
have no hard evidence that it is not, 
when I did my original research for my 
wife 3 years ago I was unable to find 
anyone for whom LDN had not worked. I 
was very worried at that time about 
going against conventional wisdom 
and boosting the immune system and 
basically trying to find anyone who 
had been harmed by LDN and again found 
no one. In the last 3 years the numbers 
using have massively increased so that 
is absolutely bound to increase the 
number who find it does not work for 
them, and of course they will form a 
disproportionately high number of message 
on such message boards by trying to 
find out why their result is not 
good , since those for whom it works 
will in general get back to living. 
So why does it not work for some - 
well I doubt there is a single answer 
but I will suggest a few 
possibilities.
 
1 In general most thing do not work 
for everyone so there probably a 
few that do everything right genuinely 
have MS and it does not work for them.
 
2. Misdiagnosis - we know most people 
ultimately diagnosed with Lymes disease 
were originally diagnosed with MS and 
we know that LDN is not a very effective 
treatment for Lyme. There is no absolute 
diagnosis test for MS so misdiagnosis is 
a fact of life and there are many things 
that could be falsely diagnosed as MS, 
some may respond to LDN some may not. 
Since no one is deliberately misdiagnosing 
people any guess at a misdiagnosis rate must 
be just that. If I found LDN did not work 
I would defiantly consider misdiagnosis.
 
3. Combining LDN with other drugs that 
suppress the immune system. Many drugs 
do deal with the symptoms of illness by 
suppressing the Immune system, some 
symptoms we get when ill are related to 
the immune system correctly fight the 
illness and some drugs do address symptoms 
this way.
 
4 LDN can be very dose critical for some 
and maybe some are not careful enough about 
this issue. For My wife 2.8Mg works well 
but 4.5 Mg was a disaster much worse that 
doing nothing at all.
 
4 High stress events. LDN can be over 
ridden if you have an event that stresses 
you out too much. Illness has a way of 
causing such event to be more frequent.
 
5 Expectations for LDN too high. The high 
percentage success rate with LDN is stopping 
disease progress, yes a smaller percentage 
get some symptom improvement but failure 
of LDN should only be considered if you get 
disease progress and can not account for in 
any other way than failure of LDN to work 
for you. Everyone reports the miracles they 
have with a treatments and that does not make 
them untrue but neither does that make them 
the norm that everyone can expect.  
David Taylor
 

I only have terminal cancer, not MS, 
but I can tell the effects of LDN, 
especially on my arthritis.  So, yes 
it works well for me.
 
Bruce Guilmette, PhD
Survive Cancer Foundation, Inc.
 

 
Hooray for LDN--it is working for me too. 
Six months on 3.0 and no progression even 
though my neuro diagnosed me as secondary 
progressive by the time they figured out it 
was MS in 2004. And I had progressed very 
rapidly in the last four years until I 
started LDN.  
 
Most of my symptoms improved or disappeared
including eye problems, which were becoming
very troublesome to me because of my work.  
Only my walking has not improved and I use 
a walker or scooter to get around.
 
And on my last visit the doctor felt that 
my legs were stronger and told me to stay 
on the LDN until our next visit in December.  
LDN is the only medication I take.  Before 
that it was methotrexate, which did nothing 
positive at all.
 
So, I would say the LDN is definitely working, 
so far!
Joyce
 

 
Good day all:

The 4.0mg curse has been broken
(I think; I hope) because in addition 
to the wonderful reversal of, again, 
unknown problems that would respond to 
LDN, (the floaters and the dribbling) 
I awoke this morning feeling wonderful. 
Not an ounce of crappy feelings to be 
found.YAHOO!!!!

Until further notice, there should be
nothing but positive words aflowing 
from these fingers. I didn't think 
this was going to happen. Looks like 
the best has come thru again with LDN. 
When the time to re-order for next 
month's supply arrives next week, I'm 
going to stickwith 4.0.

Feelin' good in the neighborhood, I yam

Dan

 
Today is the 81st day on 4.0 and I 
still feel as good, if not betterthan 
I did yesterday. Improvements in all 
areas except for cognitionand dizziness. 
Cog has improved slightly - tho hard to 
really tell.Dizziness is mild unless I 
strain myself.

Two nights ago I walked at a faster
than usual pace, feeling weaknessin my 
kness throughout the walk. But my leg 
muscles felt fine. Untilyesterday when 
I paid a visit to JBland. Felt miserable 
all day: weak,fatigued and cranky.

Woke up this am and felt even better
than 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 the
improvement of my emotional well being, 
I'm going to stay at 4.0 for another 
month and see what happens.

Dan
 

 

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

transdermally:

- Her BMs are now reduced to 1/day

(sometimes 2)
- Blood is not visible.
- She is now completely tapered off

Prednisone andSulfasalazine and is much

less moodier and happy. Her appetite has
also improved.


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.
bird4713


 

Started 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.

Janet Deason


 

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.

Nathan Kennard

 

 


 

 

Hi Crystal,
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!

Alice


 

 

 

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
existing nodules.

Chronology

    *
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

right salpingo-oophorectomy
    *
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, 2006
PET 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

confirmed metastases.


    *
January 29, 2007
PET Scan: Comparison

scan with September 14, 2006 PET 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

more detail.
Calculated Doubling Time of 33 days since
previous scan.



    *
February 3, 2007
CT 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

survival.


    *
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 Florida and had
      it couriered to me. I started taking LDN

on FEBRUARY 12, 2007


    *
June 13, 2007 LOW 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.


      Deidre Alejo


 

 

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  

#5sleep great!                        

#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?

Thanks spike.


 

 

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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