Is LDN a hoax?

[Guest guest]

My wife has been on LDN for almost three months with no

improvement. Because of messages posted on this web site, she has

tried three different fillers in the hope that that might be the

problem. (even though the pharmacist at The Prescription Center said

that as long as it's a fast-release filler, one is no better than

the next.) Needless to say, she's beginning to get somewhat

depressed especially after reading about these miracles which have

been happening to others and also after her last telephone

consultation with Dr. when he said that most people see an

improvement after two months. My wife is also on Copaxone which has

stabilized her lesions--no new ones for four years--but has not

improved her symptoms. Why should she be on LDN if it's doing no

more than the Copaxone? Her neurologist did not want her to try

this, and I'm beginning to agree. It seems as though she's just

setting herself up for yet another disappointment. Does anyone out

there have similar feelings or experiences, or are all of you having

miracles happen? Would appreciate any replies.

Dan

[Guest guest]

In addition to the LDN and Copaxone, what other meds, vitamins/minerals and food stuffs is she consuming? Does she drink a lot of caffeine products? Eat a lot of chocolate? or anything else she may otherwise be allergic to?

Is she taking it between 9pm and 3am? 3.0 or 4.5? Has she changed doses? What time does she take it? Every day, same time?

Any opinions are just that, best guesses. What are the expectations? What hasn't improved that she's looking for improvement? It seems that the best LDN can do is help regulate the immune system, the body does the rest. Maybe there's long term damage, so it's hard to see if there's any changes.

Without knowing someone's day to day lifestyle choices, the Big picture, it's hard to comment. I go to chiropractors, I've gone for allergy testing, I gave up caffeine products in 2000 and don't have much any more, I gave up the quantity of dairy I eat back in 1998, and chocolate I avoid, but even with LDN I am almost sure could still flare me up.

My wife noticed my sleep had changed right away, she said I was sleeping more peaceful than I used to. After 9 days my RLS went away, after years of bothering me. After 11 days my bladder urgency/frequency changed and never went back to the way it was before LDN... and a few other things, as time went on. I've been taking 3.0 since I started, and usually between 12 and 2am, more often 1-2AM, rarely any earlier than midnight.

Don't have any other ideas... best of luck to you and her. I don't think what LDN has done for me is a miracle, it only gave my body the assistance it needed to do whatever it could for me.

----- Original Message -----

From: lindafahrbach

low dose naltrexone

Sent: Saturday, February 07, 2004 11:53

Subject: [low dose naltrexone] Is LDN a hoax?

My wife has been on LDN for almost three months with no improvement. Because of messages posted on this web site, she has tried three different fillers in the hope that that might be the problem. (even though the pharmacist at The Prescription Center said that as long as it's a fast-release filler, one is no better than the next.) Needless to say, she's beginning to get somewhat depressed especially after reading about these miracles which have been happening to others and also after her last telephone consultation with Dr. when he said that most people see an improvement after two months. My wife is also on Copaxone which has stabilized her lesions--no new ones for four years--but has not improved her symptoms. Why should she be on LDN if it's doing no more than the Copaxone? Her neurologist did not want her to try this, and I'm beginning to agree. It seems as though she's just setting herself up for yet another disappointment. Does anyone out there have similar feelings or experiences, or are all of you having miracles happen? Would appreciate any replies.

[Guest guest]

Dan,

It is my understanding that LDN stops the progression of ms. So one might not feel or see improvement. Dr. Bihari advised me that some do have improvement at the start. I have been taking it since last July, no problems, no progression. There was some improvement with urinary urgency and frequency at the start which has remained constant.

Regards,

Tom

[Guest guest]

Hi All,

I got dramatic results in the first few days of LDN. (Day 5) My balance returned, bladder control returned I was up and dancing! Now that first day I will admit I over did it. My legs were sore and I was very tired the next day. Now day 9 I am wobbly again, still better than I was mind you and not using my cane. But why would I have this perfect day and then back slide and not be able to get back there?

Secondly I saw my new neuro and we just about had a fight. He knew what naltrexone was and had used it on a patient in the 70s to stop self mutilation (high dose) this patient bit herself badly. My Doc had not heard of LDN for MS and said all the typical doubting doctor things.... Why no clinical, if this was all true why no big bold headline news. He then stated well the endorphins will increase the mood and that is what made me feel so much better. This is where I went off, Mood? Mood you say? well I was not leaning on a cane and still unable to walk a straight line because I was in a bad mood! And I certainly was not peeing my pants because I was in a bad mood! This got his attention and I promised to research this. In fact he stated antidotal or not we would gather all the information about this LDN there was. even said if this were all true, "we" would write a paper on it and he would put all his MS patients on it! I told him to get his prescription pad handy! Think I found a good Neuro finally. He did make me promise to stay on the Rebif as well, though he knows I want off it. So here I am taking my shots thinking that when I see him in April he will be a believer. I spoke to a friend of his who said he loves research and he will know all there is to know about LDN by April. He did agree there is no harm in it. I am keeping my fingers crossed for his other MS patients as well as having another neurologist on board.

Blessing,

Zil

[Guest guest]

Hi Dan, I was diagnosed MS in 1989. I have a lot of problems with

spasms too. I take antibiotics (natural or chemical if it gets

worse), next to LDN. LDN makes the spasms less, but with antibiotics

its much much better. I use LDN since 2 jnauari, before that I was

depending on antibiotics only. Without it, my body was in a

constant stretch spasm. But thats my experience and of a few others.

Not saying your wife should do the same, but maybe think about it.

Chey

[Guest guest]

CHEY

THERE WAS A TIME WHEN ALL I WANTED TO DO WAS STRETCH. ARE YOU SAYING

THIS COULD HAVE BEEN A SPASM?

[Guest guest]

Hi Dan

I have had MS for 27 years and have had spasms since about 1987. I

started on Tegretol for the spasms in 1987. I was taking it 3 and 4 times

daily and it kept it pretty much under control unless I was under stress. I

started LDN in June 2003 and my spasms have eased up quite a bit. I now

only take the tegretol 2 times daily and sometimes I forget to take it one

of those times. I swear by the LDN and won't stop using it until something

else comes along to cure me.

I also had an MRI in January 2004 and there was no progression. Every

other time that I had an MRI there was always a little progression.

I think that your wife needs to give the LDN more of a chance and not give

up yet.

Marie

----- Original Message -----

From: " lindafahrbach " <Lee@...>

<low dose naltrexone >

Sent: Saturday, February 07, 2004 6:54 PM

Subject: [low dose naltrexone] Re: Is LDN a hoax?

> My wife also takes baclofen, calcium, and Vitamin E. She does not

> consume caffein. She takes the LDN right before bed at around 11:00

> p.m. Started at 3 mg. and then went to 4.5mg. She is looking for

> improvement with the spasticity in her left arm and hand. Has had

> MS since 1988 and the spasticity has increased over the past several

> years.

> Dan

>

> > In addition to the LDN and Copaxone, what other meds,

> vitamins/minerals and food stuffs is she consuming? Does she drink

> a lot of caffeine products? Eat a lot of chocolate? or anything

> else she may otherwise be allergic to?

> >

> > Is she taking it between 9pm and 3am? 3.0 or 4.5? Has she

> changed doses? What time does she take it? Every day, same time?

> >

> > Any opinions are just that, best guesses. What are the

> expectations? What hasn't improved that she's looking for

> improvement? It seems that the best LDN can do is help regulate the

> immune system, the body does the rest. Maybe there's long term

> damage, so it's hard to see if there's any changes.

> >

> > Without knowing someone's day to day lifestyle choices, the Big

> picture, it's hard to comment. I go to chiropractors, I've gone for

> allergy testing, I gave up caffeine products in 2000 and don't have

> much any more, I gave up the quantity of dairy I eat back in 1998,

> and chocolate I avoid, but even with LDN I am almost sure could

> still flare me up.

> >

> > My wife noticed my sleep had changed right away, she said I was

> sleeping more peaceful than I used to. After 9 days my RLS went

> away, after years of bothering me. After 11 days my bladder

> urgency/frequency changed and never went back to the way it was

> before LDN... and a few other things, as time went on. I've been

> taking 3.0 since I started, and usually between 12 and 2am, more

> often 1-2AM, rarely any earlier than midnight.

> >

> > Don't have any other ideas... best of luck to you and her. I

> don't think what LDN has done for me is a miracle, it only gave my

> body the assistance it needed to do whatever it could for me.

> > ----- Original Message -----

> > From: lindafahrbach

> > low dose naltrexone

> > Sent: Saturday, February 07, 2004 11:53

> > Subject: [low dose naltrexone] Is LDN a hoax?

> >

> >

> > My wife has been on LDN for almost three months with no

> > improvement. Because of messages posted on this web site, she

> has

> > tried three different fillers in the hope that that might be the

> > problem. (even though the pharmacist at The Prescription Center

> said

> > that as long as it's a fast-release filler, one is no better

> than

> > the next.) Needless to say, she's beginning to get somewhat

> > depressed especially after reading about these miracles which

> have

> > been happening to others and also after her last telephone

> > consultation with Dr. when he said that most people see an

> > improvement after two months. My wife is also on Copaxone which

> has

> > stabilized her lesions--no new ones for four years--but has not

> > improved her symptoms. Why should she be on LDN if it's doing no

> > more than the Copaxone? Her neurologist did not want her to try

> > this, and I'm beginning to agree. It seems as though she's just

> > setting herself up for yet another disappointment. Does anyone

> out

> > there have similar feelings or experiences, or are all of you

> having

> > miracles happen? Would appreciate any replies.

>

>

>

>

>

[Guest guest]

WOW

[Guest guest]

Dan--- ceertainly you have seen the other posts. It stops the PROGRESSION

without a doubt. One may or may NOT have any symptom improvements. It will

end NEW symptoms. My son has been on it for 4 years. NO new symptoms --this

after years of going downhill including one year on Avonex, in which he

went downhill fast! Helen RN

----- Original Message -----

From: " lindafahrbach " <Lee@...>

<low dose naltrexone >

Sent: Saturday, February 07, 2004 8:53 AM

Subject: [low dose naltrexone] Is LDN a hoax?

> My wife has been on LDN for almost three months with no

> improvement. Because of messages posted on this web site, she has

> tried three different fillers in the hope that that might be the

> problem. (even though the pharmacist at The Prescription Center said

> that as long as it's a fast-release filler, one is no better than

> the next.) Needless to say, she's beginning to get somewhat

> depressed especially after reading about these miracles which have

> been happening to others and also after her last telephone

> consultation with Dr. when he said that most people see an

> improvement after two months. My wife is also on Copaxone which has

> stabilized her lesions--no new ones for four years--but has not

> improved her symptoms. Why should she be on LDN if it's doing no

> more than the Copaxone? Her neurologist did not want her to try

> this, and I'm beginning to agree. It seems as though she's just

> setting herself up for yet another disappointment. Does anyone out

> there have similar feelings or experiences, or are all of you having

> miracles happen? Would appreciate any replies.

>

> Dan

>

>

>

>

>

>

[Guest guest]

Hi Zil,

It is great to hear you are doing so well on LDN. Please keep us posted on how

you are doing! Great to hear about the Neurologist and you "getting" his attention!

Mighty Fine!

Luck & His Blessings be upon You

Jim

----- Original Message -----

From: zillba@...

low dose naltrexone

Sent: Sunday, February 08, 2004 1:24 AM

Subject: Re: [low dose naltrexone] Re: Is LDN a hoax?

Hi All,

I got dramatic results in the first few days of LDN. (Day 5) My balance returned, bladder control returned I was up and dancing! Now that first day I will admit I over did it. My legs were sore and I was very tired the next day. Now day 9 I am wobbly again, still better than I was mind you and not using my cane. But why would I have this perfect day and then back slide and not be able to get back there?

Secondly I saw my new neuro and we just about had a fight. He knew what naltrexone was and had used it on a patient in the 70s to stop self mutilation (high dose) this patient bit herself badly. My Doc had not heard of LDN for MS and said all the typical doubting doctor things.... Why no clinical, if this was all true why no big bold headline news. He then stated well the endorphins will increase the mood and that is what made me feel so much better. This is where I went off, Mood? Mood you say? well I was not leaning on a cane and still unable to walk a straight line because I was in a bad mood! And I certainly was not peeing my pants because I was in a bad mood! This got his attention and I promised to research this. In fact he stated antidotal or not we would gather all the information about this LDN there was. even said if this were all true, "we" would write a paper on it and he would put all his MS patients on it! I told him to get his prescription pad handy! Think I found a good Neuro finally. He did make me promise to stay on the Rebif as well, though he knows I want off it. So here I am taking my shots thinking that when I see him in April he will be a believer. I spoke to a friend of his who said he loves research and he will know all there is to know about LDN by April. He did agree there is no harm in it. I am keeping my fingers crossed for his other MS patients as well as having another neurologist on board.

Blessing,

Zil

[Guest guest]

Helen..........I know your son is taking it ..But since you had breast

cancer 4 years ago Helen you are able to take it too.....to prevent any

problems down the road ......right....let me know your thought on this as i

am taking it for breast cancer .......Sandy

----- Original Message -----

From: " Helen Hecker " <twinpeak@...>

<low dose naltrexone >

Sent: Sunday, February 08, 2004 12:40 PM

Subject: Re: [low dose naltrexone] Is LDN a hoax?

> Dan--- ceertainly you have seen the other posts. It stops the PROGRESSION

> without a doubt. One may or may NOT have any symptom improvements. It

will

> end NEW symptoms. My son has been on it for 4 years. NO new

symptoms --this

> after years of going downhill including one year on Avonex, in which he

> went downhill fast! Helen RN

> ----- Original Message -----

> From: " lindafahrbach " <Lee@...>

> <low dose naltrexone >

> Sent: Saturday, February 07, 2004 8:53 AM

> Subject: [low dose naltrexone] Is LDN a hoax?

>

>

> > My wife has been on LDN for almost three months with no

> > improvement. Because of messages posted on this web site, she has

> > tried three different fillers in the hope that that might be the

> > problem. (even though the pharmacist at The Prescription Center said

> > that as long as it's a fast-release filler, one is no better than

> > the next.) Needless to say, she's beginning to get somewhat

> > depressed especially after reading about these miracles which have

> > been happening to others and also after her last telephone

> > consultation with Dr. when he said that most people see an

> > improvement after two months. My wife is also on Copaxone which has

> > stabilized her lesions--no new ones for four years--but has not

> > improved her symptoms. Why should she be on LDN if it's doing no

> > more than the Copaxone? Her neurologist did not want her to try

> > this, and I'm beginning to agree. It seems as though she's just

> > setting herself up for yet another disappointment. Does anyone out

> > there have similar feelings or experiences, or are all of you having

> > miracles happen? Would appreciate any replies.

> >

> > Dan

> >

> >

> >

> >

> >

> >

[Guest guest]

KiKi..what dose ajustment to help you sleep better did Dr. Bihari make sandy

----- Original Message -----

From: noclue915@...

low dose naltrexone

Sent: Saturday, February 07, 2004 10:53 PM

Subject: [low dose naltrexone] Is LDN a Hoax?

Dan, I am a patient of Dr. Bihari. I thought he may be a quack so I had to see for myself. He is not and this is what he told me.....

1. I would maybe and probably only regain what I had lost in the past 3 months.

He was correct.

2. The LDN should make me sleep better being I had not slept in 8 yrs.

He was correct after a dose adjustment at my 6 month visit

3. It is not a cure, but it should stop the progression.

So far 8 months later, no progression .

4. It is not the LDN making me feel better and more energetic, it is my own endorphins.

From friends in my MS group who have started the LDN ( because they have seen how much better I appear) I have observed a few things.(5 of us including myself)

1. Everyone feels more energetic

2.The ones on Copaxone seem to have taken longer to see any improvement and what they have seen is subtle but they have noticed less fatigue.

3. RR seems to see more improvement,probably because they are less damaged.

I know that some of us have had great improvements, others none, others small subtle ones, but most of us are hoping the progression ends and anything else is a perk.

Hope this helps somewhat. Kiki

[Guest guest]

Dan:

I'd recommend trying taking the LDN closer to 9:00 PM to see what effect that might have. A number of MS patients find that taking it closer to 9:00 works better for them. It may take longer for the endorphin blockade to work on some people.

Also, has she ever experienced any insomnia or stiffness that she can contribute to LDN?

Noland

----- Original Message -----

From: Kathy Penrose

low dose naltrexone

Sent: Monday, February 09, 2004 1:34 PM

Subject: Re: [low dose naltrexone] Re: Is LDN a hoax?

Dan I am sorry to hear your wife hasn't made any improvement. When I first went on LDN I took 25 mg for 2 1/2 weeks because I didn't know of a compounding pharmacy. I have found one now but I think the high dose may have shocked my system into working right. My pain that I had for 5 years straight went away the first day. I went from ussing a walker to not using anything around the house. I only use a cane outside now. I am afraid of falling on the cement. It hurts more than the floors do! I had to go off my oxycontin for a week before starting the Naltrexone which put me down for the week but it was worth it. I know it is only suppose to stop progression but I will take the extras. I had spasticity in the feet and then they went numb. I had that come back then the ldn cleared it up my feet are now fine.

FlashyKathy

----- Original Message -----

From: lindafahrbach

low dose naltrexone

Sent: Saturday, February 07, 2004 6:54 PM

Subject: [low dose naltrexone] Re: Is LDN a hoax?

My wife also takes baclofen, calcium, and Vitamin E. She does not consume caffein. She takes the LDN right before bed at around 11:00 p.m. Started at 3 mg. and then went to 4.5mg. She is looking for improvement with the spasticity in her left arm and hand. Has had MS since 1988 and the spasticity has increased over the past several years. Dan> In addition to the LDN and Copaxone, what other meds, vitamins/minerals and food stuffs is she consuming? Does she drink a lot of caffeine products? Eat a lot of chocolate? or anything else she may otherwise be allergic to?> > Is she taking it between 9pm and 3am? 3.0 or 4.5? Has she changed doses? What time does she take it? Every day, same time?> > Any opinions are just that, best guesses. What are the expectations? What hasn't improved that she's looking for improvement? It seems that the best LDN can do is help regulate the immune system, the body does the rest. Maybe there's long term damage, so it's hard to see if there's any changes. > > Without knowing someone's day to day lifestyle choices, the Big picture, it's hard to comment. I go to chiropractors, I've gone for allergy testing, I gave up caffeine products in 2000 and don't have much any more, I gave up the quantity of dairy I eat back in 1998, and chocolate I avoid, but even with LDN I am almost sure could still flare me up.> > My wife noticed my sleep had changed right away, she said I was sleeping more peaceful than I used to. After 9 days my RLS went away, after years of bothering me. After 11 days my bladder urgency/frequency changed and never went back to the way it was before LDN... and a few other things, as time went on. I've been taking 3.0 since I started, and usually between 12 and 2am, more often 1-2AM, rarely any earlier than midnight. > > Don't have any other ideas... best of luck to you and her. I don't think what LDN has done for me is a miracle, it only gave my body the assistance it needed to do whatever it could for me. > ----- Original Message ----- > From: lindafahrbach > low dose naltrexone > Sent: Saturday, February 07, 2004 11:53> Subject: [low dose naltrexone] Is LDN a hoax?> > > My wife has been on LDN for almost three months with no > improvement. Because of messages posted on this web site, she has > tried three different fillers in the hope that that might be the > problem. (even though the pharmacist at The Prescription Center said > that as long as it's a fast-release filler, one is no better than > the next.) Needless to say, she's beginning to get somewhat > depressed especially after reading about these miracles which have > been happening to others and also after her last telephone > consultation with Dr. when he said that most people see an > improvement after two months. My wife is also on Copaxone which has > stabilized her lesions--no new ones for four years--but has not > improved her symptoms. Why should she be on LDN if it's doing no > more than the Copaxone? Her neurologist did not want her to try > this, and I'm beginning to agree. It seems as though she's just > setting herself up for yet another disappointment. Does anyone out > there have similar feelings or experiences, or are all of you having > miracles happen? Would appreciate any replies.