Re: Just wondering........?

[Guest guest]

My dad, Bentley, started LDN October 2004. We felt that it was worth trying since the side effects were minimal and the cost was less than a $1.00 a day. Within days, the muscle tension that was affecting his breathing and causing tremendous stiffness and pain, started to dissipate and his breathing returned to normal. Within a year he was able to lower his PD meds by more than 60%. Prior to starting LDN, his daily medication for Parkinson’s was 10 Sinemet 25/100, 3 Permax .25mg, 2 Artane 2mg. Today his daily medication for Parkinson’s is 4 to 5 Sinemet 25/100, no Permax, 1 Artane and 4.5mg LDN.He continues to use LDN as a part of his treatment program with the same success.Best Regards,Destiny sandramarie1009 <sandramarie1009@...> wrote: Has anyone heard of taking LDN with neurological disorders classified as movement disorders? Such as dystonia's? I don't have time to read all the posts. I've seen a lot of MS,

etc. But wondered about Parkinson's and mostly dystonia's. I've been somewhat told I have a dystonia in my trunk, midsection. OR OR...it could be a connective tissue since some of my bloodwork has been positive in the past.

[Guest guest]

Hi marie,

I will copy some of the Parkinsons stories I have collected:

My mother also has Parkinson's and has been using LDN now for about 7 months. She did start with the traditional meds and still uses them. The had a great break through a few years back with what they call a "push" drug (with glutathione sp?). But that was expensive and she was spending a lot of time going to get her pushes/infusions. After a while she had tapered down to only once a week and we noticed her going backwards a bit (but still far better than she had been before). Later we introduced the LDN. She noticed her feeling of well being come back, she did not need to take very many naps anymore and she was shaking less overall. She went back to being able to drive most of the time. I notice that when my mom has stress she shakes more and seems less with it. This appears to be a real key here. As I recall 's uncle

had also gone backwards and showed more symptoms for a while. I should check in with her and see if he had been under stress at that time. And how about your Mom, do you think she may have been more stressed prior to her having problems?

All my best

Aletha

An other:

Mom (person with PD) at 74 was diagnosed in 2003. We then put together many suspicious actions of the prior 5 years and attributed them to PD. We chose to go unconventional and declline for the time the usual sinemet RX. In lieu we have chosen supplementation which CoEnzyme 10, 1200 mg is a part. After finding this ldn site in 2004 (? exactness of date) and getting questions answered by Boyle and Destiny, I implemented mom's supplements with the 3.5 dosage of ldn & noticed results THE NEXT DAY! For 2 yrs. we have been content with the benefits of the 3.5 dose. Suddenly, it seemed mom was deteriorated. That lasted 1 week before it dawned on me that I could up the dose to 4.5 (I'd learned earlier about dosage options from this site). Sure enough the very next day mom was once again functional. We know this may only be temporary but even at that, it is a good thing for us! I'm

eternally grateful for the ldn experience! Ingrid

[low dose naltrexone] Just wondering........?Has anyone heard of taking LDN with neurological disorders classified as movement disorders? Such as dystonia's? I don't have time to read all the posts. I've seen a lot of MS, etc. But wondered about Parkinson's and mostly dystonia's. I've been somewhat told I have a dystonia in my trunk, midsection. OR OR...it could be a connective tissue since some of my bloodwork has been positive in the past.------------------------------------

[Guest guest]

Regarding Parkinson's and LDN... I've just started my DH (diagnosed

with PD over a year ago, symptoms for at least 4 years before that)

with 4.5 mg LDN. He started nearly a week ago.

Does anyone know how long it takes for the LDN to show some effect?

I'm getting it from Irmat Pharmacy in NYC. So far, my DH is

sleeping the same, or maybe more than usual. (He's an unusual PWP

in that he sleeps a LOT, over 12 hours at night, and a nap in the

day.) No vivid dreams, though he says he does dream now (before

he didn't think so). His tremor, speech problems, cognition, are

all the same. Maybe he's in a slightly better mood, hard to tell.

Am I being impatient? Should we see some effect soon? Or does

it sometimes take months for positive effects to show up?

What's your experience?

Sea

Has anyone heard of taking LDN with neurological disorders

classified

> as movement disorders? Such as dystonia's? I don't have time to read

> all the posts. I've seen a lot of MS, etc. But wondered about

> Parkinson's and mostly dystonia's. I've been somewhat told I have a

> dystonia in my trunk, midsection. OR OR...it could be a connective

> tissue since some of my bloodwork has been positive in the past.

>

[Guest guest]

A lot of people think that LDN is

going to take all their symptoms away and some think that LDN will take them

back before they were diagnosed with MS or any other autoimmune disorder and

cancer they have. Yes LDN stops or slows your progression but it’s not a cure

and LDN affects everyone different as like anything else does.

I was rereading through Anne

Boyle Bradley’s book “Up the Creek with a Paddle” which I suggest you buy and

read if you haven’t and in one section where was talking to Dr. Bihari

about her husband’s MS, Dr Bihari insisted to that LDN is NOT A CURE for MS

and he stated that LDN would Remove The Last 3 Months Worth Of Damage if

Noel (’s husband) was lucky, but it seemed to be universal in Stopping

Disease Progression.

goes on to say that she tells

Dr. Bihari about her uncle that has Parkinson’s disease. Dr Bihari told

that although Parkinson’s was medically documented with unknown etiology, he

believed that Parkinson’s was also an autoimmune disease. Dr. Bihari told

that because of his success with HIV, Aids and MS, he started branching out in

diseases. Dr. Bihari explained that he was very thankful for the internet

because it made it possible for him to reach so many more people than ever

before. Dr. Bihari was excited and told at that time he had 3 Parkinson’s

patients on LDN for over a year and that although it was too early then for him

to say for sure that it worked, he assured that it was too early then for

him to say for sure that it worked and assured that it looked very

promising. If nothing else, Dr. Bihari insisted LDN was worth a try for

Parkinson’s based on the fact that there are No Side Effects and It Is A Very

Inexpensive Therapy.

Dr. Bihari explains that ANY Doctor

could prescribe LDN for their patients and told that he was delighted to

share his information with her and wished her well. Dr. Bihari just asked that

the LDN be compounded as described on the LDN Website (www.ldninfo.org). Dr. Bihari assured

that it was an easy thing to do and that any compounding pharmacy could do it

IF instructed PROPERLY but it was important that it was compounded correctly

for LDN to work!!!

This is taken from Anne Boyle

Bradley’s book “Up the Creek with a Paddle” (http://www.marybradleybooks.com/LDN%20Book.htm).

I just don’t want people to get false

hopes and think LDN is a quick fix because its not and it takes time for LDN to

get into your system and work and the main purpose of LDN is to Stop the

Progression and if you get any of the other Benefits from it then that is a Big

Bonus…….Just my 2 cents…..

Hugs & Blessings,CrystalLDN_Users Group Owner Diagnosed November 2004 with Secondary Progressive MS, Transverse Myelitis and an Advocate for LDN!! 3 years on LDN with Skip's Pharmacy..... Crystal's MS,TM & LDN Website Crystal's LDN Gift Shop Crystal's LDN Support Group Skip's Compounding Pharmacy LDN Website [low dose naltrexone] Re: Just wondering........?

Regarding Parkinson's and LDN... I've just started my DH (diagnosed

with PD over a year ago, symptoms for at least 4 years before that)

with 4.5 mg LDN. He started nearly a week ago.

Does anyone know how long it takes for the LDN to show some effect?

I'm getting it from Irmat Pharmacy in NYC. So far, my DH is

sleeping the same, or maybe more than usual. (He's an unusual PWP

in that he sleeps a LOT, over 12 hours at night, and a nap in the

day.) No vivid dreams, though he says he does dream now (before

he didn't think so). His tremor, speech problems, cognition, are

all the same. Maybe he's in a slightly better mood, hard to tell.

Am I being impatient? Should we see some effect soon? Or does

it sometimes take months for positive effects to show up?

What's your experience?

Sea

Has anyone heard of taking LDN with neurological disorders

classified

> as movement disorders? Such as dystonia's? I don't have time to read

> all the posts. I've seen a lot of MS, etc. But wondered about

> Parkinson's and mostly dystonia's. I've been somewhat told I have a

> dystonia in my trunk, midsection. OR OR...it could be a connective

> tissue since some of my bloodwork has been positive in the past.

>

[Guest guest]

> Has anyone heard of taking LDN with neurological disorders

> classified

> > as movement disorders? Such as dystonia's? I don't have time

to read

> > all the posts. I've seen a lot of MS, etc. But wondered about

> > Parkinson's and mostly dystonia's. I've been somewhat told I

have a

> > dystonia in my trunk, midsection. OR OR...it could be a

connective

> > tissue since some of my bloodwork has been positive in the past.

> >

>

[Guest guest]

Well said, Crystal. I just orederd that book and hope it is a good read. It looks like a realistic documentary and goes through all the issues facing those affected.I am looking forward to reading this.

BC

From: Crystals MS TM LDN Website <angelindisguise67@...>Subject: Re: [low dose naltrexone] Re: Just wondering........?low dose naltrexone Date: Wednesday, September 17, 2008, 10:49 PM

A lot of people think that LDN is going to take all their symptoms away and some think that LDN will take them back before they were diagnosed with MS or any other autoimmune disorder and cancer they have. Yes LDN stops or slows your progression but it’s not a cure and LDN affects everyone different as like anything else does.

I was rereading through Anne Boyle Bradley’s book “Up the Creek with a Paddle” which I suggest you buy and read if you haven’t and in one section where was talking to Dr. Bihari about her husband’s MS, Dr Bihari insisted to that LDN is NOT A CURE for MS and he stated that LDN would Remove The Last 3 Months Worth Of Damage if Noel (’s husband) was lucky, but it seemed to be universal in Stopping Disease Progression.

goes on to say that she tells Dr. Bihari about her uncle that has Parkinson’s disease. Dr Bihari told that although Parkinson’s was medically documented with unknown etiology, he believed that Parkinson’s was also an autoimmune disease. Dr. Bihari told that because of his success with HIV, Aids and MS, he started branching out in diseases. Dr. Bihari explained that he was very thankful for the internet because it made it possible for him to reach so many more people than ever before. Dr. Bihari was excited and told at that time he had 3 Parkinson’s patients on LDN for over a year and that although it was too early then for him to say for sure that it worked, he assured that it was too early then for him to say for sure that it worked and assured that it looked very promising. If nothing else, Dr. Bihari insisted LDN was worth a try for Parkinson’s based on the fact that there are No Side

Effects and It Is A Very Inexpensive Therapy.

Dr. Bihari explains that ANY Doctor could prescribe LDN for their patients and told that he was delighted to share his information with her and wished her well. Dr. Bihari just asked that the LDN be compounded as described on the LDN Website (www.ldninfo. org). Dr. Bihari assured that it was an easy thing to do and that any compounding pharmacy could do it IF instructed PROPERLY but it was important that it was compounded correctly for LDN to work!!!

This is taken from Anne Boyle Bradley’s book “Up the Creek with a Paddle” (http://www.marybrad leybooks. com/LDN%20Book. htm).

I just don’t want people to get false hopes and think LDN is a quick fix because its not and it takes time for LDN to get into your system and work and the main purpose of LDN is to Stop the Progression and if you get any of the other Benefits from it then that is a Big Bonus…….Just my 2 cents…..

Hugs & Blessings,

Crystal

LDN_Users Group Owner

Diagnosed November 2004 with Secondary Progressive MS, Transverse Myelitis and an Advocate for LDN!! 3 years on LDN with Skip's Pharmacy.... .

Crystal's MS,TM & LDN Website

Crystal's LDN Gift Shop

Crystal's LDN Support Group

Skip's Compounding Pharmacy

LDN Website

[low dose naltrexone] Re: Just wondering... .....?

Regarding Parkinson's and LDN... I've just started my DH (diagnosed with PD over a year ago, symptoms for at least 4 years before that) with 4.5 mg LDN. He started nearly a week ago. Does anyone know how long it takes for the LDN to show some effect? I'm getting it from Irmat Pharmacy in NYC. So far, my DH is sleeping the same, or maybe more than usual. (He's an unusual PWP in that he sleeps a LOT, over 12 hours at night, and a nap in the day.) No vivid dreams, though he says he does dream now (before he didn't think so). His tremor, speech problems, cognition, are all the same. Maybe he's in a slightly better mood, hard to tell. Am I being impatient? Should we see some effect soon? Or does it sometimes take months for positive effects to show up? What's your experience? Sea Has anyone heard of taking LDN with neurological disordersclassified > as movement disorders? Such as dystonia's? I don't have time to read > all the posts. I've seen a lot of MS, etc. But wondered about > Parkinson's and mostly dystonia's. I've been somewhat told I have a > dystonia in my trunk, midsection. OR OR...it could be a connective > tissue since some of my bloodwork has been positive in the past.>

[Guest guest]

, I wanted to chime in here....I was on the fence about trying LDN for my MS until I read 's book, "Up the Creek..." and also by watching the 2006 LDN conference on DVD from Skip's. I know they are trying to get the new 2007 LDN conference out, BUT the 2006 DVD is very helpful as well. I suggest folks order a copy from Skip's. I sat on the edge of my seat watching that DVD !! Very interesting....JanetRRMS 1994LDN May '07

From: Crystals MS TM LDN Website <angelindisguise67@...>Subject: Re: [low dose naltrexone] Re: Just wondering.........?low dose naltrexone Date: Wednesday, September 17, 2008, 10:49 PM

A lot of people think that LDN is going to take all their symptoms away and some think that LDN will take them back before they were diagnosed with MS or any other autoimmune disorder and cancer they have. Yes LDN stops or slows your progression but it’s not a cure and LDN affects everyone different as like anything else does.

I was rereading through Anne Boyle Bradley’s book “Up the Creek with a Paddle” which I suggest you buy and read if you haven’t and in one section where was talking to Dr. Bihari about her husband’s MS, Dr Bihari insisted to that LDN is NOT A CURE for MS and he stated that LDN would Remove The Last 3 Months Worth Of Damage if Noel (’s husband) was lucky, but it seemed to be universal in Stopping Disease Progression.

goes on to say that she tells Dr. Bihari about her uncle that has Parkinson’s disease. Dr Bihari told that although Parkinson’s was medically documented with unknown etiology, he believed that Parkinson’s was also an autoimmune disease. Dr. Bihari told that because of his success with HIV, Aids and MS, he started branching out in diseases. Dr. Bihari explained that he was very thankful for the internet because it made it possible for him to reach so many more people than ever before. Dr. Bihari was excited and told at that time he had 3 Parkinson’s patients on LDN for over a year and that although it was too early then for him to say for sure that it worked, he assured that it was too early then for him to say for sure that it worked and assured that it looked very promising. If nothing else, Dr. Bihari insisted LDN was worth a try for Parkinson’s based on the fact that there are No

Side

Effects and It Is A Very Inexpensive Therapy.

Dr. Bihari explains that ANY Doctor could prescribe LDN for their patients and told that he was delighted to share his information with her and wished her well. Dr. Bihari just asked that the LDN be compounded as described on the LDN Website (www.ldninfo. org). Dr. Bihari assured that it was an easy thing to do and that any compounding pharmacy could do it IF instructed PROPERLY but it was important that it was compounded correctly for LDN to work!!!

This is taken from Anne Boyle Bradley’s book “Up the Creek with a Paddle” (http://www.marybrad leybooks. com/LDN%20Book. htm).

I just don’t want people to get false hopes and think LDN is a quick fix because its not and it takes time for LDN to get into your system and work and the main purpose of LDN is to Stop the Progression and if you get any of the other Benefits from it then that is a Big Bonus…….Just my 2 cents…..

Hugs & Blessings,

Crystal

LDN_Users Group Owner

Diagnosed November 2004 with Secondary Progressive MS, Transverse Myelitis and an Advocate for LDN!! 3 years on LDN with Skip's Pharmacy.... .

Crystal's MS,TM & LDN Website

Crystal's LDN Gift Shop

Crystal's LDN Support Group

Skip's Compounding Pharmacy

LDN Website

[low dose naltrexone] Re: Just wondering... .....?

Regarding Parkinson's and LDN... I've just started my DH (diagnosed with PD over a year ago, symptoms for at least 4 years before that) with 4.5 mg LDN. He started nearly a week ago. Does anyone know how long it takes for the LDN to show some effect? I'm getting it from Irmat Pharmacy in NYC. So far, my DH is sleeping the same, or maybe more than usual. (He's an unusual PWP in that he sleeps a LOT, over 12 hours at night, and a nap in the day.) No vivid dreams, though he says he does dream now (before he didn't think so). His tremor, speech problems, cognition, are all the same. Maybe he's in a slightly better mood, hard to tell. Am I being impatient? Should we see some effect soon? Or does it sometimes take months for positive effects to show up? What's your experience? Sea Has anyone heard of taking LDN with neurological disordersclassified > as movement disorders? Such as dystonia's? I don't have time to read > all the posts. I've seen a lot of MS, etc. But wondered about > Parkinson's and mostly dystonia's. I've been somewhat told I have a > dystonia in my trunk, midsection. OR OR...it could be a connective > tissue since some of my bloodwork has been positive in the past.>

[Guest guest]

Hi , Thanks, 's book "Up the Creek with a Paddle" is very well worth the read and I highly recommend the book for everyone to read no matter what disease you have. Once you get into the book you won't want to put it down. Hugs & Blessings,CrystalLDN_Users Group

Owner Diagnosed November 2004 with Secondary Progressive MS, Transverse Myelitis and an Advocate for LDN!! 3 years on LDN with Skip's Pharmacy..... Crystal's MS,TM & LDN

Website Crystal's LDN Gift Shop Crystal's LDN Support Group Skip's Compounding Pharmacy LDN Website [low dose naltrexone] Re: Just wondering... .....?

Regarding Parkinson's and LDN... I've just started my DH (diagnosed with PD over a year ago, symptoms for at least 4 years before that) with 4.5 mg LDN. He started nearly a week ago. Does anyone know how long it takes for the LDN to show some effect? I'm getting it from Irmat Pharmacy in NYC. So far, my DH is sleeping the same, or maybe more than usual. (He's an unusual PWP in that he sleeps a LOT, over 12 hours at night, and a nap in the day.) No vivid dreams, though he says he does dream now (before he didn't think so). His tremor, speech problems, cognition, are all the same. Maybe he's in a slightly better mood, hard to tell. Am I being impatient? Should we see some effect soon? Or does it sometimes take months for positive effects to show up? What's your experience? Sea Has anyone heard of taking LDN with neurological disordersclassified > as movement disorders? Such as dystonia's? I don't have time to read > all the posts. I've seen a lot of MS, etc. But wondered about > Parkinson's and mostly dystonia's. I've been somewhat told I have a > dystonia in my trunk, midsection. OR OR...it could be a connective > tissue since some of my bloodwork has been positive in the past.>

[Guest guest]

Many thanks everyone for your responses!

I know I am being impatient (partly because I was expecting at least

sleep disturbances....) All your comments really help. I'm going to

buy Bradley's book.

Whether Parkinson's is officially an auto-immune disorder or not, it

certainly is at least partly a problem of inflammation in the brain. I

can't get my DH to change his diet much (especially because of his

memory issues, but also because he won't deprive himself of his

comfort food)... But I think, from what I've read, that LDN may help

directly with the inflammation issues. And I've started him on some

supplements a month or so ago (he was resistant to those as well, but

I've shown him enough studies and gone on about it enough that he's

taking them now). I'll let you guys know how things go.

All best wishes,

Sea

> Has anyone heard of taking LDN with neurological disorders

> classified

> > as movement disorders? Such as dystonia's? I don't have time to read

> > all the posts. I've seen a lot of MS, etc. But wondered about

> > Parkinson's and mostly dystonia's. I've been somewhat told I have a

> > dystonia in my trunk, midsection. OR OR...it could be a connective

> > tissue since some of my bloodwork has been positive in the past.

> >

>