Side effects of LDN

[Guest guest]

Noland,

Yes, it is the first pharmacy listed on the list. I would think they

would know what filler to use. Well, this is only Day 2, and as the

day goes on, I feel better. It is probably the initial rush of the

endorphins that are making me feel strange.

I seemed to have more energy though, as I was walking outside

without my cane around the yard with the dog, and it was pretty

good! Joan in PA

[Guest guest]

hi bernadette my brothers got ms but his progression was severe. i can tell

ya that 8 months ago he was sent home from hospital on feeding tube with no

good outcome. today after4 months on ldn he can move his legs,feel pain

and tickling, he can swallow and is starting to talk again,his bladder is

starting to work again, his breathing is better and no need for oxygen and

heart seems to be doing better,his concentration better hes more awake and

alert his motor skills have improved.it is like his ms has gone into

remission and everything is going in reverse!!!! he even looks 10 yrs

younger then he did a yr ago. i believe its his vitamin regimine and the

ldn. hes only taking 3 mg. improvement will happen. brother has not

walked in yrs but he will walk by next yr.he was in final stages of

progressive ms.last yr he was on life support once and early in yr he was

also on the vent. now hes on very little meds and mostly alternative hes

eating soft foods also and no UTIS so far this yr!!! good luck with

brother.

nancy millar

>From: Bernadette MacFarland <macfarlandbernadette@...>

>Reply-low dose naltrexone

>low dose naltrexone

>Subject: Re: [low dose naltrexone] Re: Side Effects of LDN

>Date: Tue, 17 Oct 2006 13:50:24 +0100 (BST)

>

>Hi Bren

>

> Just spoke to my brother's pharmacist and he told me we should only be

>giving him 4.5 mg. Whoever printed the label on the bottle made a mistake,

>however, he pointed out that the extra amount would not harm him in any

>way, it was just a waste of the liquid. Paddy is being treated with

>anit-histamines at present, so hopefully the symptons should ease. Many

>thanks for your help and advice.

>

> Bernadette

>

>Bren <b63powell@...> wrote:

>

> > >

> > > Hi Everyone

> > >

> > > Can anyone tell me if

>they are experiencing

>itchiness from taking LDN.

> > My brother who is

>suffering from Motor

>Neurone Disease (LGD/ALS)

>is now

> > taking 5 mg. Would the

>increase in dosage bring

>about this itchiness. To

> > date we have not seen

>any improvement in my

>brother, but we are hoping

> > it is early days. I

>would appreciate hearing

>from anyone suffering from

> > Motor Neurone Disease

>(LGD/ALS) who is finding

>taking LDN beneficial to

> > them and in what areas

>they found an improvement.

> > >

> > > Bernadette

> > >

>=========

>

>BTW, why is he taking 5mg

>of LDN? He should not be

>taking over 4.5mg.

>

>

>

>

>

>

>

> Send instant messages to your online friends

>http://uk.messenger.

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[Guest guest]

Hi Thanks for your reply . I will look at the website suggested. Hope all is well with you. Bernadettesurffcity <surffcity@...> wrote: > >> >> Hi Everyone> >>> >> Can anyone tell me if they are experiencing itchiness from taking> >> LDN. My brother who is suffering from Motor Neurone Disease (LGD/ > >> ALS)> >> is now taking 5 mg. Would the increase in

dosage bring about this> >> itchiness. To date we have not seen any improvement in my brother,> >> but we are hoping it is early days. I would appreciate hearing from> >> anyone suffering from Motor Neurone Disease (LGD/ALS) who is finding> >> taking LDN beneficial to them and in what areas they found an > >> improvement.> >>> >> Bernadette> >> > Bernadette,it seems that you have gotten the dose straightened out, for your brother, but seemedto feel that the itchiness he's experiencing, may be from an underlying yeast problem, which can be helped by diet. > > Send instant messages to your online friends http://uk.messenger.

[Guest guest]

Hi What can I say. Your letter was so uplifting and positive. It is good to hear of positive results on LDN. My brother can no longer walk, talk, eat, or swallow and is fed through a tube. He has only been on LDN for three weeks and we have yet to see any improvement in his condition. Like most people we want to see immediate results, but we know this will not happen overnight. Can you tell me what vitamins your brother is taking. I am so glad to know your brother has improved to such an extent, here's hoping Paddy will travel the same road. Again, many thanks Bernadette (Derry, Northern Ireland)nancy millar <millar505@...> wrote: hi bernadette my brothers got ms but his progression was severe. i can tell ya that 8 months ago he was sent home from hospital on feeding tube with no good outcome. today after4 months on ldn he can move his legs,feel pain and tickling, he can swallow and is starting to talk again,his bladder is starting to work again, his breathing is better and no need for oxygen and heart seems to be doing better,his concentration better hes more awake and alert his motor skills have improved.it is like his ms has gone into remission and everything is going in reverse!!!! he even looks 10 yrs younger then he did a yr ago. i believe its his vitamin

regimine and the ldn. hes only taking 3 mg. improvement will happen. brother has not walked in yrs but he will walk by next yr.he was in final stages of progressive ms.last yr he was on life support once and early in yr he was also on the vent. now hes on very little meds and mostly alternative hes eating soft foods also and no UTIS so far this yr!!! good luck with brother.nancy millar>From: Bernadette MacFarland <macfarlandbernadette@....uk>>Reply-low dose naltrexone >low dose naltrexone >Subject: Re: [low dose naltrexone] Re: Side Effects of LDN>Date: Tue, 17 Oct 2006 13:50:24 +0100 (BST)>>Hi Bren>> Just spoke to my brother's pharmacist

and he told me we should only be >giving him 4.5 mg. Whoever printed the label on the bottle made a mistake, >however, he pointed out that the extra amount would not harm him in any >way, it was just a waste of the liquid. Paddy is being treated with >anit-histamines at present, so hopefully the symptons should ease. Many >thanks for your help and advice.>> Bernadette>>Bren <b63powell > wrote:> > > >> > > Hi Everyone> > >> > > Can anyone tell me if>they are experiencing>itchiness from taking LDN.> > My brother who is>suffering from Motor>Neurone Disease (LGD/ALS)>is now> > taking 5 mg. Would the>increase in dosage bring>about this itchiness. To> > date we have not seen>any improvement in my>brother, but we are hoping> > it is early days. I>would appreciate hearing>from anyone suffering from> > Motor Neurone Disease>(LGD/ALS) who is finding>taking LDN beneficial to> > them and in what areas>they found an improvement.> > >> > > Bernadette> > >>=========>>BTW, why is he taking 5mg>of LDN? He should not be>taking over

4.5mg.>>>>>>>> Send instant messages to your online friends >http://uk.messenger.__________________________________________________________Get FREE company branded e-mail accounts and business Web site from Microsoft Office Live http://clk.atdmt.com/MRT/go/mcrssaub0050001411mrt/direct/01/

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[Guest guest]

Hi Bernadette,

Yep, agree but in your brother's case remember that the main aim of LDN

is to stop or slow progression. Only maybe 30% of people experience

improvement so expecting it is setting yourself up for failure.

Bernadette MacFarland wrote:

> Hi

>

> What can I say. Your letter was so uplifting and positive. It is

> good to hear of positive results on LDN. My brother can no longer

> walk, talk, eat, or swallow and is fed through a tube. He has only

> been on LDN for three weeks and we have yet to see any improvement in

> his condition. Like most people we want to see immediate results, but

> we know this will not happen overnight.

>

> Can you tell me what vitamins your brother is taking.

>

> I am so glad to know your brother has improved to such an extent,

> here's hoping Paddy will travel the same road.

>

> Again, many thanks

>

> Bernadette (Derry, Northern Ireland)

[Guest guest]

I think I could speak for most all of us when I say we're so

happy for this miraculous change in your brother! How wonderful!

Keep us posted! Sandy

[Guest guest]

,

What do you mean that only 30% experience improvement? Do you mean in

symptoms? At least for MS I know that the percentage is much greater than

that.

Thanks

Aletha

Re: [low dose naltrexone] Re: Side Effects of LDN

> Hi Bernadette,

>

> Yep, agree but in your brother's case remember that the main aim of LDN

> is to stop or slow progression. Only maybe 30% of people experience

> improvement so expecting it is setting yourself up for failure.

>

>

>

> Bernadette MacFarland wrote:

>

>> Hi

>>

>> What can I say. Your letter was so uplifting and positive. It is

>> good to hear of positive results on LDN. My brother can no longer

>> walk, talk, eat, or swallow and is fed through a tube. He has only

>> been on LDN for three weeks and we have yet to see any improvement in

>> his condition. Like most people we want to see immediate results, but

>> we know this will not happen overnight.

>>

>> Can you tell me what vitamins your brother is taking.

>>

>> I am so glad to know your brother has improved to such an extent,

>> here's hoping Paddy will travel the same road.

>>

>> Again, many thanks

>>

>> Bernadette (Derry, Northern Ireland)

>

>

>

>

>

>

>

[Guest guest]

Aletha,

Possibly I was being slightly pessimistic as was quoting the lower end

of the scale but I have seen it quoted on here (not sure who by or how

they arrived at the figure) that 30% - 40% experience symptom

improvement for MS/ALS and everything else neurological. Based on what

I have read on here over almost 3 years that would seem a reasonable

figure to me.

It also I thought seemed politic to make sure people started using LDN

with reasonable expectations i.e. that it would hopefully slow or stop

their progression and if they did experience an improvement that it was

a bonus (albeit a great one!). If people start on it expecting

improvement and don't get it then LDN will tend to become associated

with a sense of failure, which I'm sure none of us want.

's brother's improvement was extremely uplifting, but it is

unreasonable to have people thinking that happens for most people. Some

people find it doesn't even slow their progression, let alone lead to

improvement. I'm certainly not trying to kill hope, just trying to

instill a sense of reality.

Aletha Wittmann wrote:

>,

>

>What do you mean that only 30% experience improvement? Do you mean in

>symptoms? At least for MS I know that the percentage is much greater than

>that.

>

>Thanks

>Aletha

>

>

>

[Guest guest]

Hi Bernadette

Rory started on 3.5mg for the first month and then increased the dose to

4mg. He has been taking LDN since July. We are happy with LDN

in that there is no side effects.

Initial changes on LDN for Rory was that he thought it helped his balance,

improved strength and lessened the tiredness on his legs in the

early morning, he looks great, he is in good form and has no

negative attitude towards the disease as yet.

He finds the condition very frustrating in that his tiredness is constant,

if he does too much one day he will be able to do little the

next day. He has dis-improved in strength and walking.Twitching

is increased in his shoulders and he suffers badly with cramps,

which are more so in his unaffected leg.

Maybe the disease has progressed or he has been doing too much. He rests a

little bit more now, more a case of been forced to rather than

taking it easy. He is restricted though walking and lifting any

weight, stairs and steps are an issue, he has to be careful of

falling as he descends steps.

Rory was on 2 Rilutek a day, he stopped for a week and noted the stiffness

in his legs has eased. He is now back to 1/day and then will go

to nil to assess if this is a real effect.

I have faith in LDN, I just hope that Rory will start to hold his own from

here on in and that the 'evil disease' inside him will be

slowed down

http://news.bbc.co.uk/2/hi/health/6054572.stm

This could be the start of clinical proof at last and speed up much needed

research for MND/ALS

Ethel

[Guest guest]

This is true , although the only time I've seen that 30% rate was when it was associated with the ABC's. I agree 100% though that LDN isnt for everybody, nothing is, as a matter of fact I have seen where SOME folks cant tolerate it at all, even at .5mg. I would be willing to bet that those who experience symptom improvement on LDN had also started some other treatment, supplemental, phys therapy, etc. I also think we need to take into consideration that some who use LDN had used an injectable prior to that, and just getting off of one of THOSE treatments helped!

Re: [low dose naltrexone] Re: Side Effects of LDN

Aletha,Possibly I was being slightly pessimistic as was quoting the lower end of the scale but I have seen it quoted on here (not sure who by or how they arrived at the figure) that 30% - 40% experience symptom improvement for MS/ALS and everything else neurological. Based on what I have read on here over almost 3 years that would seem a reasonable figure to me.It also I thought seemed politic to make sure people started using LDN with reasonable expectations i.e. that it would hopefully slow or stop their progression and if they did experience an improvement that it was a bonus (albeit a great one!). If people start on it expecting improvement and don't get it then LDN will tend to become associated with a sense of failure, which I'm sure none of us want.'s brother's improvement was extremely uplifting, but it is unreasonable to have people thinking that happens for most people. Some people find it doesn't even slow their progression, let alone lead to improvement. I'm certainly not trying to kill hope, just trying to instill a sense of reality.Aletha Wittmann wrote:>,>>What do you mean that only 30% experience improvement? Do you mean in >symptoms? At least for MS I know that the percentage is much greater than >that.>>Thanks>Aletha>> >

[Guest guest]

My husband only started LDN, and he was a quick reactor and has lots almost all of his symptoms and is back to 2 sports a day. We know 2 people personally that have gotten out of the wheel chair with MS, and there has been a tremendous amount of success with LDN shown on this chat site. Most people after a while of doing well get tired of reading all of the posts and they don't get on and continue to tell of their good responses.

Yes LDN is not for everyone. No it does not work for everyone the same way. But overall the response is immensely greater than 30% for most illnesses it is taken for.

My best

Aletha

Re: [low dose naltrexone] Re: Side Effects of LDN

Aletha,Possibly I was being slightly pessimistic as was quoting the lower end of the scale but I have seen it quoted on here (not sure who by or how they arrived at the figure) that 30% - 40% experience symptom improvement for MS/ALS and everything else neurological. Based on what I have read on here over almost 3 years that would seem a reasonable figure to me.It also I thought seemed politic to make sure people started using LDN with reasonable expectations i.e. that it would hopefully slow or stop their progression and if they did experience an improvement that it was a bonus (albeit a great one!). If people start on it expecting improvement and don't get it then LDN will tend to become associated with a sense of failure, which I'm sure none of us want.'s brother's improvement was extremely uplifting, but it is unreasonable to have people thinking that happens for most people. Some people find it doesn't even slow their progression, let alone lead to improvement. I'm certainly not trying to kill hope, just trying to instill a sense of reality.Aletha Wittmann wrote:>,>>What do you mean that only 30% experience improvement? Do you mean in >symptoms? At least for MS I know that the percentage is much greater than >that.>>Thanks>Aletha>> >

[Guest guest]

Hi ,

Maybe it is time for another poll. I really don't think that the

percentages are correct.

Thanks for your very thoughtful reply

Aletha

Re: [low dose naltrexone] Re: Side Effects of LDN

> Aletha,

>

> Possibly I was being slightly pessimistic as was quoting the lower end

> of the scale but I have seen it quoted on here (not sure who by or how

> they arrived at the figure) that 30% - 40% experience symptom

> improvement for MS/ALS and everything else neurological. Based on what

> I have read on here over almost 3 years that would seem a reasonable

> figure to me.

>

> It also I thought seemed politic to make sure people started using LDN

> with reasonable expectations i.e. that it would hopefully slow or stop

> their progression and if they did experience an improvement that it was

> a bonus (albeit a great one!). If people start on it expecting

> improvement and don't get it then LDN will tend to become associated

> with a sense of failure, which I'm sure none of us want.

>

> 's brother's improvement was extremely uplifting, but it is

> unreasonable to have people thinking that happens for most people. Some

> people find it doesn't even slow their progression, let alone lead to

> improvement. I'm certainly not trying to kill hope, just trying to

> instill a sense of reality.

>

>

>

> Aletha Wittmann wrote:

>

>>,

>>

>>What do you mean that only 30% experience improvement? Do you mean in

>>symptoms? At least for MS I know that the percentage is much greater than

>>that.

>>

>>Thanks

>>Aletha

>>

>>

>>

>

>

>

>

>

>

[Guest guest]

Hi,

I am taking LDN for chronic pelvic pain related to fibro/Lyme. I have friends with MS and one with ALS. It would be great to know the % of people that have symptom improvement with LDN for MS and ALS as compared to the % with lessening or haulting the progression. What % does it help slow or stop progression? Also does anyone have any success stories of LDN for chronic pain?

I know some of these percentages are unknown, but it would be great to have a survey. Perhaps it would be good to survey prescribing physicians.

Thanks for any insight you can give me on LDNs success with pain or ALS.

Sandi

[Guest guest]

I dont doubt you, but I have a hard time believing that there isnt SOMETHING else going on other than simply using LDN. I've been using it for over three years, and have followed many of the forums, and I havent seen many stories of 'miraculous' recoveries like those. I'm not saying they're not true, I'm simply stating that I havent seen any, and the few I HAVE seen were from people who were also following some other protocol. I think LDN is great, for the most part I feel it has stopped the progression of 'whatever' I have, fortunately for me, I wasnt that bad off when I started. You're right about not hearing from many members on this forum, out of the 2-3 thousand that are here, there are basically only a handful that ever post. It sure would be nice to hear from many more, especially those that have been here a while on LDN.

Re: [low dose naltrexone] Re: Side Effects of LDN

Aletha,Possibly I was being slightly pessimistic as was quoting the lower end of the scale but I have seen it quoted on here (not sure who by or how they arrived at the figure) that 30% - 40% experience symptom improvement for MS/ALS and everything else neurological. Based on what I have read on here over almost 3 years that would seem a reasonable figure to me.It also I thought seemed politic to make sure people started using LDN with reasonable expectations i.e. that it would hopefully slow or stop their progression and if they did experience an improvement that it was a bonus (albeit a great one!). If people start on it expecting improvement and don't get it then LDN will tend to become associated with a sense of failure, which I'm sure none of us want.'s brother's improvement was extremely uplifting, but it is unreasonable to have people thinking that happens for most people. Some people find it doesn't even slow their progression, let alone lead to improvement. I'm certainly not trying to kill hope, just trying to instill a sense of reality.Aletha Wittmann wrote:>,>>What do you mean that only 30% experience improvement? Do you mean in >symptoms? At least for MS I know that the percentage is much greater than >that.>>Thanks>Aletha>> >

[Guest guest]

Here's my thought for what's it's worth. We can't ignore the

mind/body connection regarding LDN treatment. Just the sheer

possibility and new hope involved when you learn of LDN is a tonic.

If you begin LDN and feel your energy start to return a bit or even

feel " something " inside that tells you your progression is

stopping (whether symptoms improve or not) the change in mental

attitude could have a huge effect - even physically. If your thinking

regarding your situation changes to a more optimistic line due to LDN

there is great power in that - probably more than we'll ever know!

It's just another factor involved in all of this.

[Guest guest]

go herehttp://skipspharmacy.com/ldn.phpgo to the bottomclick on skips ny academy of science presentationit not unknown. i believe this is exactly the original number Drr Bahari  came up withwe've been following our ldn patients for years and next year we'll have more datacyndiOn Oct 18, 2006, at 12:10 PM, Sandi Sharp wrote:Hi, I am taking LDN for chronic pelvic pain related to fibro/Lyme.  I have friends with MS and one with ALS.  It would be great to know the % of people that have symptom improvement with LDN for MS and ALS as compared to the % with lessening or haulting the progression.  What % does it help slow or stop progression?  Also does anyone have any success stories of LDN for chronic pain?I know some of these percentages are unknown, but it would be great to have a survey.  Perhaps it would be good to survey prescribing physicians. Thanks for any insight you can give me on LDNs success with pain or ALS. Sandi