Re: [lowdosenaltrexone] ASAP!!!!

[Guest guest]

hi dennis

 

this is a personal experience  on ldn that i started 02 december last year so 8

months

 

1st month started on 1ml and increased each month by 1ml till max 4.5ml then i

got capsules 4.5mg

 

my ms is all in my legs, neuro muscular: cramps, stiffness, spasms, neuro pain

 

due to increase problems of neuro leg problems i went back to liquid and down to

1ml then 2ml, but still same

 

other meds baclofen [for stiffness] and nortriptylene [for neuro pain 10mg -

not for depression]

 

also had recent surgery [supra pubic catheter] and was on morphine, anti-bio and

penicilin

 

after 2 weeks started again on ldn 2ml and back came the leg problems, so

stopping for a while

 

not sure where to go next but have capsules and liquid as will try again in near

future

 

good luck

 

regards/peter/london/ppms

 

To: " lowdosenaltrexone " <lowdosenaltrexone >

Sent: Wednesday, 27 July 2011, 16:40

Subject: [lowdosenaltrexone] ASAP!!!!

 

Can someone who is fighting M.S. tell me how LDN is working for them? I would

prefer someone who has been taking it for at least 5 months to respond; thanks!

[Guest guest]

Dennis,

Have been on LDN for 1+ year. Nothing, and will soon give it up.

Tammy

[Guest guest]

Some people REALLY seem to love LDN. Some of my experience;

1) Asked 1st neurologist for an LDN script. His response was that he had a

dozen patients try LDN and " it wasn't a good experience for anybody "

2) hired a " quackish " physician to get my first LDN script. Exactly followed

the guidelines from the Yahoo LDN board. Out of the dozen responses I received,

about 3, maybe 4, of the 12 reported positive results.

A note I received from a fellow LDNer after I posted my study of 12 people.

STRONGLY feel this long time / still regulary posting on the LDN board, merely

used my results to base his somewhat inflated response of 120 people. Base my

skepticism on his deletrion of his data from the Yahoo LDN board. Taught me to

better copy things I find interesting!

Compilation of letters from fellow on LDN message board and my conclusion.

Dated about 7/13/07

I must have sent out 120 emails.

Some of their reasons were they thought it wasn't working, some never tried it

all as they were only looking for info, some found out later they had Lyme

Disease, some were talked out of using LDN by their doctors/family/friends, many

emails were returned to me as undeliverable/ no such address. Everyone who

replied were more than eager to help me any way they could. Very friendly. I

believe I posted my results on Dr. Gluck's Yahoo board.

I received about 60 replies. 40 or so were still on LDN. The others had

different reasons why they had discontinued.

A....

Conclusion:

120 (approx) emails sent

60 replies

40 still using LDN

20 of them had different reasons for discontinuing the LDN.

MY INPUT:

That’s 33% of the people taking LDN are still using it. That’s about the

same percentage of clinical trial patients that showed results with Rebif.

Next batches of stories;

LDN, Bad Stories

http://health.groups.yahoo.com/group/lowdosenaltrexone/message/53809

NEW RESOURCE AVAILABLE - STRESS REMOVAL AT A DISTANCE

Tue Sep 11, 2007 12:03 am

Vicki genuinelysweet2002@...

You say to post off topic info on the " LDN support group " I'm confused....I

thought this *was* the LDN support group? Where can we talk about other

therapies? I know this group is for LDN only, but it would be nice if it was LDN

*mostly.* Because when LDN doens't work, then it's nice to hear about other

therapies so you are not totally hopeless. And I dont know of another board to

get this ifno from. Because here we are all in the same boat and if this doenst

work, it is good to have an alternative. If people use the subject line to

indicate it is another therapy then people who dont care to read it can skip

over it right? It's just an idea. Obviously i am not the owner(s). I am just

stating my opinion now that LDN has failed me miserably.

LDN was no use to my partner.

Message #53761

Mon Sep 10, 2007 10:23 am

" petesketchley "

petesketchley

My partner Margot has advanced secondary progressive MS.

She has taken 4.5mg LDN for six months and she has had NO benefit at

all from it.

I wish all MS sufferers well and hope that they have a better

experience than we did.

When we read of people who have been in a wheelchair for years taking

LDN and walking.... Well I hope it is true and wish them well.

I want people to realise that others like us for whom it didn't work

at all are in fact unlikely to do what i am doing now and saying so!

Thus anecdotes abound of 'success' (maybe)and our disappointments are

unspoken.

There is only one thing worse than the handwringing 'no hope' from

our neurologist and that is the pedlars of false hopes.

Pete

>

> Dennis,

> Have been on LDN for 1+ year. Nothing, and will soon give it up.

> Tammy

>

>

>

[Guest guest]

For the record, LDN didn't improve my symptoms nor did I have any exacerbations

while I was taking it or since I stopped. I was already immobile at the time. I

think everyone should try it if only to cross it off the list of posibilities.

It might do the trick for you.

>

> Some people REALLY seem to love LDN. Some of my experience;

[Guest guest]

My 2 cents: I saw a Preventative Medicine Doctor who had me try 4mg LDN daily

for 2 months. Insurance would not cover it. The Doctor's fee was $150 and the

LDN was $90. It improved my mood and outlook slightly, but I saw no releif from

MS stymptoms. At the time, I was also shooting Copaxone daily which I have

stopped.

-Tim

> >

> > Some people REALLY seem to love LDN. Some of my experience;

>

[Guest guest]

I have been on 4.5mg of LDN since 7/8/04...no progression, no colds.. ( used to

get 2 a year 0, no flu or any sickness of any kind...THANKFULLY.

Regards,

Tom Bayuk

Re: [lowdosenaltrexone] ASAP!!!!

Some people REALLY seem to love LDN. Some of my experience;

1) Asked 1st neurologist for an LDN script. His response was that he had a

dozen patients try LDN and " it wasn't a good experience for anybody "

2) hired a " quackish " physician to get my first LDN script. Exactly followed

the guidelines from the Yahoo LDN board. Out of the dozen responses I received,

about 3, maybe 4, of the 12 reported positive results.

A note I received from a fellow LDNer after I posted my study of 12 people.

STRONGLY feel this long time / still regulary posting on the LDN board, merely

used my results to base his somewhat inflated response of 120 people. Base my

skepticism on his deletrion of his data from the Yahoo LDN board. Taught me to

better copy things I find interesting!

Compilation of letters from fellow on LDN message board and my conclusion.

Dated about 7/13/07

I must have sent out 120 emails.

Some of their reasons were they thought it wasn't working, some never tried it

all as they were only looking for info, some found out later they had Lyme

Disease, some were talked out of using LDN by their doctors/family/friends, many

emails were returned to me as undeliverable/ no such address. Everyone who

replied were more than eager to help me any way they could. Very friendly. I

believe I posted my results on Dr. Gluck's Yahoo board.

I received about 60 replies. 40 or so were still on LDN. The others had

different reasons why they had discontinued.

A....

Conclusion:

120 (approx) emails sent

60 replies

40 still using LDN

20 of them had different reasons for discontinuing the LDN.

MY INPUT:

Thatâ?Ts 33% of the people taking LDN are still using it. Thatâ?Ts about the

same percentage of clinical trial patients that showed results with Rebif.

Next batches of stories;

LDN, Bad Stories

http://health.groups.yahoo.com/group/lowdosenaltrexone/message/53809

NEW RESOURCE AVAILABLE - STRESS REMOVAL AT A DISTANCE

Tue Sep 11, 2007 12:03 am

Vicki genuinelysweet2002@...

You say to post off topic info on the " LDN support group " I'm confused....I

thought this *was* the LDN support group? Where can we talk about other

therapies? I know this group is for LDN only, but it would be nice if it was LDN

*mostly.* Because when LDN doens't work, then it's nice to hear about other

therapies so you are not totally hopeless. And I dont know of another board to

get this ifno from. Because here we are all in the same boat and if this doenst

work, it is good to have an alternative. If people use the subject line to

indicate it is another therapy then people who dont care to read it can skip

over it right? It's just an idea. Obviously i am not the owner(s). I am just

stating my opinion now that LDN has failed me miserably.

LDN was no use to my partner.

Message #53761

Mon Sep 10, 2007 10:23 am

" petesketchley "

petesketchley

My partner Margot has advanced secondary progressive MS.

She has taken 4.5mg LDN for six months and she has had NO benefit at

all from it.

I wish all MS sufferers well and hope that they have a better

experience than we did.

When we read of people who have been in a wheelchair for years taking

LDN and walking.... Well I hope it is true and wish them well.

I want people to realise that others like us for whom it didn't work

at all are in fact unlikely to do what i am doing now and saying so!

Thus anecdotes abound of 'success' (maybe)and our disappointments are

unspoken.

There is only one thing worse than the handwringing 'no hope' from

our neurologist and that is the pedlars of false hopes.

Pete

>

> Dennis,

> Have been on LDN for 1+ year. Nothing, and will soon give it up.

> Tammy

>

>

>

[Guest guest]

Hi Everyone

My husband started LDN about 4 months ago. It has helped with some of his

neuropathic pain and has seemed to make a huge difference in his outlook and

quality of life. Prior to him starting it, I was worried he was going to kill

himself. After being on it for a few days, he seemed to get his " spark " back and

is doing much better. His outlook on life is worth everything for me because I

no longer fear what he might do to himself. He has had no progression, he has

PPMS. He has been treated for CCSVI as well so we are not sure what has helped

with his vision, but he went in thinking his eyes were worsening again and

turned out his eyes have gotten stronger. He got to cut his prisms in half and

the eye doctor was at a loss for what would make such a dramatic improvement in

his vision after four years of progressive weakening. I believe the LDN and

treating the CCSVI have helped him out and seem to compliment each other in his

case.

I do not have MS, but have chronic neck pain after an injury. I asked our pain

doctor if I could try LDN as well. It has taken the edge off my pain and I seem

to have a lot more energy and less of a appetite on it. All great things for me.

We get it at a local compounding pharmacy for 30 a month. I am on 3.0 mg and he

went up to 4.5 mg last month. Both of us have more vivid dreams on it, but other

than that no side effects.

Amy

[Guest guest]

LDN has been promoted here as an alternative to CRAB drugs since the group's

inception. It comes up frequently and some of the members have seen great

benefits from it, some haven't.

>

> I've been a group member for two+ years and I had no idea this was an " LDN

support group " ....I've always viewed it as an " alternative therepy MS support

group " .

[Guest guest]

Great news about the LDN for you both.My vision improved dramatically after

CCSVI treatment - I can use weaker eye glasses and all colours are more vibrant,

blurred vision has disappeared. I'm not on LDN.I wondered if it is also

possible for you to be tested for CCSVI. As 1 in 4 people have it anyway, it

could be contributing to your neck pain.Janet

To: mscured

From: amynjunes@...

Date: Mon, 1 Aug 2011 13:32:08 -0500

Subject: Re: [lowdosenaltrexone] ASAP!!!!

Hi Everyone

I do not have MS, but have chronic neck pain Amy