Is LDN a Hoax?

[Guest guest]

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]

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 low dose naltrexone , " LarryGC " <larrygc@s...>

wrote:

> 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]

HI DAN

I'VE BEEN ON LDN SINCE NOVEMBER,

PROBABLY ABOUT THE 6th. AT FIRST I SAW IMPROVEMENT BUT NOT SINCE THEN.

I WAS ADVISED BY THIS GROUP (WON'T MENTION NAMES) TO NEVER NEVER NEVER

GIVE UP. THAT EVEN THOUGH LDN DOESN'T SEEM LIKE IT'S WORKING, IT REALLY

IS. THOUGH I STILL HAVE MY MS DAYS I HAVE NOT HAD AN ATTACK AND I FELT

LIKE I WAS WALKING ON THIN ICE THERE FOR A WHILE. BUT STILL NO ATTACKS.

I STOPPED THE NOVANTRONE, IT WAS ON STRICTLY BY CHOICE. STILL NO

ATTACK. SO I HAVE TO SAY, FOR ME, IT IS WORKING EVEN THOUGH I DON'T SEE

ANY IMPROVEMENTS.

[Guest guest]

Hi and Dan As long as the spacticity doesn't get worse then the ldn. is working, remember this is not a cure Val... it has not helped my spacticity at all but it has improved my quality of life in many other areas. I was diagnosed with ms. in 1981 and have had secondary progressive since an accident in 1996 .In my books this is no hoax I am now on day onehundred and twenty something! I am still very badly hooked on caffeine but I am taking all the multivitamins and 1400 of D daily.

I have never had the luxury? of taking the ABC drugs so this is the best I can get. Reg.

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

From: low dose naltrexone

Date: 02/07/04 16:55:59

low dose naltrexone

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.

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[Guest guest]

I don't want to, my muscles just cramp and push my body in a certain

position I can't get out until they decide to relaxe. Mostly my back-

and leg musles. These " cramps " are so hard and unbreakable, it

hurts.

Chey

> CHEY

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

SAYING

> THIS COULD HAVE BEEN A SPASM?

[Guest guest]

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.