Re - Just curious

[Guest guest]

Very good point!!!

Marcie

In a message dated 2/25/2005 2:27:43 PM Central Standard Time, betrue@... writes:

Good point, Dave Tayler. I would like to urge everyone crying out for clinical trials o LDN to please stop!!! The drug has already had clinical triels and was approved, and the only way to get it off the market is to make it into an illegal drug and a controlled substance. Then it can be conhtrolled and made inaccessible.

[Guest guest]

I think it would be wrong to suggest there is wholesale corruption of doctors in the medicine they offer. They do get money from drug companies when they provide records related to the performance of drugs with their patients, your doctor will get probably get a fee for speaking at various events including the one you refer to and of course most doctors would be bright enough to work out that if they pushed something like LDN the invitations to speak at such events might dry up. These things are of course financed by drug companies to push their products and lead doctors to believe that drug companies are behaving responsibly and can be trusted. The problem to me would seem to be that the only treatments that can be licensed are those that drug companies apply for a licence for, any treatment that does not suit their financial system will not be further researched. Their financial interests are best serve by expensive treatment rather than cures, if those treatments have side effects that require more drugs to treat then up go the profits again. As with all professions there will be some doctors that are incompetent or bent but it is not my view that is the general situation.

Dave

Message: 16 Date: Thu, 24 Feb 2005 10:56:46 -0800 (PST) From: KVG <snoopylover_2000@...>Subject: Just curious........................My husband brought the mail in the other day and I received a invitation from the NMSS to attend a seminar on Tysabri, and guess who the speaker is............................my neuro!! Well this got me to thinking about his financial gain in trying to get me on this stuff, since he didn't even give me the time to look into LDN like I asked! Anyway, I'm just wondering if anyone knows how much $$ the pharmaceutical co. pay the Dr's. for every patient they get to take these type of drugs? Am I thinking negatively, or are these Dr's just padding there pockets at our expense?On a lighter note, I am biting the bullet and giving up on Rebif. I am so happy with what I am seeing/feeling with LDN I didn't want the Rebif to interfere. Thanks to all of you who encouraged me to give LDN a chance! Karin

[Guest guest]

Good point, Dave Tayler. I would like to urge everyone crying out for clinical trials o LDN to please stop!!! The drug has already had clinical triels and was approved, and the only way to get it off the market is to make it into an illegal drug and a controlled substance. Then it can be conhtrolled and made inaccessible.

I talked to the wife of a renown neurologist in Texas who had been very infuential in the Ms Society at the national level. She told me she quit promoting the MS Society when a really high mucky muck told her (secretly) that no cure for any major disease would ever be found again, using polio as the example. When polio was 'cured', it took out part of the industry!!! Since then, I tell everyone to quit walking for MS, etc.

If there was a clinical trial for LDN, it would cost millions, be made inaccesible, and then be 'approved' at a much higher cost to cover the cost of the trials. THI NK, people. A month's supply of it now costs only about $20-30 a month. People with no insurance and on Medicare can afford that now. They will not be able to if it goes through clinbical trials. We don't need clinical trials now. The anecdotal is enough for D.O.s and other doctors to prescribe it without the trials. Neuros may not because it jeapordizes their profession. It would empty their offices.

That is a GOOD thing!

Jan

Just curious........................My husband brought the mail in the other day and I received a invitation from the NMSS to attend a seminar on Tysabri, and guess who the speaker is............................my neuro!! Well this got me to thinking about his financial gain in trying to get me on this stuff, since he didn't even give me the time to look into LDN like I asked! Anyway, I'm just wondering if anyone knows how much $$ the pharmaceutical co. pay the Dr's. for every patient they get to take these type of drugs? Am I thinking negatively, or are these Dr's just padding there pockets at our expense?On a lighter note, I am biting the bullet and giving up on Rebif. I am so happy with what I am seeing/feeling with LDN I didn't want the Rebif to interfere. Thanks to all of you who encouraged me to give LDN a chance! Karin

[Guest guest]

There are some valid points here, but we still have some problems with LDN usage. We don't have a good understanding of dosages, how to deal with side effects, what to really expect from the drug on an individual basis. For the people who are seeing limited success with it would another manner of using it improve its effect? We don't know. Do any of the supplements we commonly use help, or hinder? We just don't know enough, and although more and more people are using LDN there is no centralized data bank to collate the feedback and make sense out of it. That would be one of the benefits of some well planned clinical trials that removed so many of the variables that are part of this group's experience.

It's a crying shame that the medical community is so affected by dollar signs.

JT

Just curious........................My husband brought the mail in the other day and I received a invitation from the NMSS to attend a seminar on Tysabri, and guess who the speaker is............................my neuro!! Well this got me to thinking about his financial gain in trying to get me on this stuff, since he didn't even give me the time to look into LDN like I asked! Anyway, I'm just wondering if anyone knows how much $$ the pharmaceutical co. pay the Dr's. for every patient they get to take these type of drugs? Am I thinking negatively, or are these Dr's just padding there pockets at our expense?On a lighter note, I am biting the bullet and giving up on Rebif. I am so happy with what I am seeing/feeling with LDN I didn't want the Rebif to interfere. Thanks to all of you who encouraged me to give LDN a chance! Karin

[Guest guest]

Jan,

I would like to add that you made a good point if I may say.

I feel the same on that there will be no cures for major diseases.

Not only would it hit the drug companies but also the societies that

are set up, like MS, ALS, ETC. If it's cured, we don't need them,

think of all the people unemployed. The only way something is cured

oo a bonified treatment comes about is when the disease starts

killing in big numbers and hits children hard, like a pandemic.

Such as the Flu of 1918. There are already scared of the Bird Flu.

Just my thoghts.

ADJ

> Good point, Dave Tayler. I would like to urge everyone crying out

for clinical trials o LDN to please stop!!! The drug has already had

clinical triels and was approved, and the only way to get it off the

market is to make it into an illegal drug and a controlled

substance. Then it can be conhtrolled and made inaccessible.

>

> I talked to the wife of a renown neurologist in Texas who had been

very infuential in the Ms Society at the national level. She told me

she quit promoting the MS Society when a really high mucky muck told

her (secretly) that no cure for any major disease would ever be found

again, using polio as the example. When polio was 'cured', it took

out part of the industry!!! Since then, I tell everyone to quit

walking for MS, etc.

>

> If there was a clinical trial for LDN, it would cost millions, be

made inaccesible, and then be 'approved' at a much higher cost to

cover the cost of the trials. THI NK, people. A month's supply of

it now costs only about $20-30 a month. People with no insurance and

on Medicare can afford that now. They will not be able to if it goes

through clinbical trials. We don't need clinical trials now. The

anecdotal is enough for D.O.s and other doctors to prescribe it

without the trials. Neuros may not because it jeapordizes their

profession. It would empty their offices.

>

> That is a GOOD thing!

>

> Jan

>

> Just curious........................

>

> My husband brought the mail in the other day and I received a

invitation from the NMSS to attend a seminar on Tysabri, and guess

who the speaker is............................my neuro!! Well this

got me to thinking about his financial gain in trying to get me on

this stuff, since he didn't even give me the time to look into LDN

like I asked! Anyway, I'm just wondering if anyone knows how much $$

the pharmaceutical co. pay the Dr's. for every patient they get to

take these type of drugs? Am I thinking negatively, or are these

Dr's just padding there pockets at our expense?

> On a lighter note, I am biting the bullet and giving up on

Rebif. I am so happy with what I am seeing/feeling with LDN I didn't

want the Rebif to interfere. Thanks to all of you who encouraged me

to give LDN a chance!

>

> Karin

>

>

>

>

[Guest guest]

Hi ,

This group has such a wonderful response system. Many of my questions have been answered by others that have gone through similar problems. I have been accumulating a list of doctors that prescribe LDN and giving it out when ever any one is in need of it. Maybe others can do the same with lists of supplements etc. Perhaps also we can have a stationary list of supplements, other meds, side effects (and cures) etc. on the site, to help people out and to keep chatters from having to have to repeat the same info. I always wonder about what important topics I have missed in the past etc.

Thanks

Aletha

Just curious........................My husband brought the mail in the other day and I received a invitation from the NMSS to attend a seminar on Tysabri, and guess who the speaker is............................my neuro!! Well this got me to thinking about his financial gain in trying to get me on this stuff, since he didn't even give me the time to look into LDN like I asked! Anyway, I'm just wondering if anyone knows how much $$ the pharmaceutical co. pay the Dr's. for every patient they get to take these type of drugs? Am I thinking negatively, or are these Dr's just padding there pockets at our expense?On a lighter note, I am biting the bullet and giving up on Rebif. I am so happy with what I am seeing/feeling with LDN I didn't want the Rebif to interfere. Thanks to all of you who encouraged me to give LDN a chance! Karin

[Guest guest]

I sure do appreciate your confirming what I have said for a long time. I am

very cncerned that if people start getting the attention of the drug

companiies i loss of sales, etc. then they wil do whatever it takes to

discredit the drug.

Just curious........................

>>

>> My husband brought the mail in the other day and I received a

> invitation from the NMSS to attend a seminar on Tysabri, and guess

> who the speaker is............................my neuro!! Well this

> got me to thinking about his financial gain in trying to get me on

> this stuff, since he didn't even give me the time to look into LDN

> like I asked! Anyway, I'm just wondering if anyone knows how much $$

> the pharmaceutical co. pay the Dr's. for every patient they get to

> take these type of drugs? Am I thinking negatively, or are these

> Dr's just padding there pockets at our expense?

>> On a lighter note, I am biting the bullet and giving up on

> Rebif. I am so happy with what I am seeing/feeling with LDN I didn't

> want the Rebif to interfere. Thanks to all of you who encouraged me

> to give LDN a chance!

>>

>> Karin

>>

>>

>>

>>

[Guest guest]

Aha, Aletha - you must be a very practical and organized person. What a great idea!!! How can that be implementd? Jan

Just curious........................My husband brought the mail in the other day and I received a invitation from the NMSS to attend a seminar on Tysabri, and guess who the speaker is............................my neuro!! Well this got me to thinking about his financial gain in trying to get me on this stuff, since he didn't even give me the time to look into LDN like I asked! Anyway, I'm just wondering if anyone knows how much $$ the pharmaceutical co. pay the Dr's. for every patient they get to take these type of drugs? Am I thinking negatively, or are these Dr's just padding there pockets at our expense?On a lighter note, I am biting the bullet and giving up on Rebif. I am so happy with what I am seeing/feeling with LDN I didn't want the Rebif to interfere. Thanks to all of you who encouraged me to give LDN a chance! Karin

[Guest guest]

I have two more doctors to add to your list:

Dr. Ann Rasmussen, , KS (South Central/ 50 miles SW of Wichita.)

620-842-3095. She is a D.O. and doesn't know much about Naltrexone xcept what I have given to her. She thinks that if it works for me she will be willing to prescribe it to anyone who comes to see her.

The other doctor is Geroge eutersonke, in Colorado Springs. Dr. J's phone number is

Just curious........................My husband brought the mail in the other day and I received a invitation from the NMSS to attend a seminar on Tysabri, and guess who the speaker is............................my neuro!! Well this got me to thinking about his financial gain in trying to get me on this stuff, since he didn't even give me the time to look into LDN like I asked! Anyway, I'm just wondering if anyone knows how much $$ the pharmaceutical co. pay the Dr's. for every patient they get to take these type of drugs? Am I thinking negatively, or are these Dr's just padding there pockets at our expense?On a lighter note, I am biting the bullet and giving up on Rebif. I am so happy with what I am seeing/feeling with LDN I didn't want the Rebif to interfere. Thanks to all of you who encouraged me to give LDN a chance! Karin

[Guest guest]

Oops - hit the wrong button, and sent the email before putting in Dr. Jeutersonke's info in the email: here it is"

Dr. J. Juetersonke3525 American DriveColorado Springs, Colorado 80917Telephone: (719) 597-6075FAX: (719) 573-6529

He also prescribes a European drug called 4-AP (4-aminopyridine) that counteracts the fatique symptoms big time! have been taking it since 1994, and it has been a life saver. I would be bedridden by now without it. It is expensive though, and has to be made by a compound pharmacist. I think each tab is roughly 85-88 cents - depends on the druggist. 4-AP is routinely given for MS in Europe. Doctors in the states don'tknow much about it, an don't seem interested. I have had to educate all my doctors.

Jan

Just curious........................My husband brought the mail in the other day and I received a invitation from the NMSS to attend a seminar on Tysabri, and guess who the speaker is............................my neuro!! Well this got me to thinking about his financial gain in trying to get me on this stuff, since he didn't even give me the time to look into LDN like I asked! Anyway, I'm just wondering if anyone knows how much $$ the pharmaceutical co. pay the Dr's. for every patient they get to take these type of drugs? Am I thinking negatively, or are these Dr's just padding there pockets at our expense?On a lighter note, I am biting the bullet and giving up on Rebif. I am so happy with what I am seeing/feeling with LDN I didn't want the Rebif to interfere. Thanks to all of you who encouraged me to give LDN a chance! Karin

[Guest guest]

I should start a petition asking MS suferers to stop calling for clinical trials and lay low so the mainstream medicine folks won't notice that we are quietly getting better and dontneed their medicine and their ofice visits. Jan

Re: [low dose naltrexone] Re - Just curious

Very good point!!! Marcie In a message dated 2/25/2005 2:27:43 PM Central Standard Time, betrue@... writes:

Good point, Dave Tayler. I would like to urge everyone crying out for clinical trials o LDN to please stop!!! The drug has already had clinical triels and was approved, and the only way to get it off the market is to make it into an illegal drug and a controlled substance. Then it can be conhtrolled and made inaccessible.

[Guest guest]

Hello, J.T.

You make an excellent point, but the trials are not necessary, and endanger the whole LDN "movement' if they get their greedy hands on it. We can do what we are doing now, and perhaps extablish a website where we can put our own anecdotal findings. For one thing, I strongy suspect that the reason why some people are having such great results and other very little is because Beta-seron injections will hinder/counter-act the effect of the LDN on the body. I was taking Avonex once a week. A few days after I got my local D.. to prescribe a month's worth of3 mg naltrexone (LDN), I came across some information about not taking the injections at the same time. I stopped the shots immediately, but still did not see much change until the 4th week. It was very little improvement though. I went back to my doctor or a second month and asked her to go to the 4.5 (recommended) dosage. She did, and I have been on it for three days. The numbness and stiffness in my right hand is going away, and yesterday I cold feel the keys of my keyboard with my fingertips for the first time. and my handwriting is amazing!!! I can write legibly. My bladder control is improving, and my balance seems to be improving. My energy is better too. My hubby says that I am doing things that I didn't do before (but that was on the 3 mg too).

I am not afraid to stop the injections because the LDN stops the progression of MS in its tracks, even better than the injections. It is well worth the 'risk' to me.

What do others have to say about injections and LDN being taken simultaneously?

By the way, if we are taking the LDN, it counteracts morpine and codeine and other drugs like that too - we should be wearing a bracelet or something.

Just curious........................My husband brought the mail in the other day and I received a invitation from the NMSS to attend a seminar on Tysabri, and guess who the speaker is............................my neuro!! Well this got me to thinking about his financial gain in trying to get me on this stuff, since he didn't even give me the time to look into LDN like I asked! Anyway, I'm just wondering if anyone knows how much $$ the pharmaceutical co. pay the Dr's. for every patient they get to take these type of drugs? Am I thinking negatively, or are these Dr's just padding there pockets at our expense?On a lighter note, I am biting the bullet and giving up on Rebif. I am so happy with what I am seeing/feeling with LDN I didn't want the Rebif to interfere. Thanks to all of you who encouraged me to give LDN a chance! Karin

[Guest guest]

I stopped wearing my Medic Alert because the dosage is very small, it is taken at bedtime, and by the time I am moving around again in the morning and could possibly be in an accident and need painkillers I doubt there is enough naltrexone in my system to cause a problem. We had a pharmacist on board here who addressed this issue and left me feeling much better about painkillers used in an emergency situation.

There are plenty of people who are not having "great" results who have never used the CRABS drugs. And it has been repeated here over and over that the only one of the CRABS that is compatible with LDN is Copaxone.

Many of us have never used any prescription meds for MS and have seen what were initially very promising changes, just like you describe. Unfortunately there are also quite a few of us who have had an occurence of apparent illness within just a few weeks of starting LDN. In my case I thought it was a flu that was going around, others have had what seemed to be a cold. In retrospect I have to say that mine must have been a true MS flare up. Would it have happened without the LDN? I don't know. I do know that I have never had such extreme weakness in my legs before, nor have I quite recovered from it.

We are not equipped to properly track these occurences, nor is the information provided by an individual always accurate. It is very easy to minimize things we don't want to see because we want very badly for this drug to help us.

I've been on LDN for over a year now. At first I saw wonderfully exciting changes, just like you are experiencing. Quite of few of those improvements faded away, and in some ways I am not as well as I was a year ago. LDN is not a panacea, but it does have promise. It very much needs serious study, and that will not occur without a very organized effort. It doesn't have to be a drug company, but someone needs to carefully track the progress of people taking LDN.

And we need to be very careful to constantly remind people that the intent is to SLOW OR STOP PROGRESSION! The improvements are a great bonus, but not to be expected in each case, nor should the hope of such improvements be the reason for taking LDN. It is very easy for people to mislead new users, who may then be very disappointed and stop taking one of the very few drugs that may actually help them. LDN does not cure MS, but it may be useful to quite a large number of people who have MS, as well as other diseases. But without study there are a lot of variables.

JT

Just curious........................My husband brought the mail in the other day and I received a invitation from the NMSS to attend a seminar on Tysabri, and guess who the speaker is............................my neuro!! Well this got me to thinking about his financial gain in trying to get me on this stuff, since he didn't even give me the time to look into LDN like I asked! Anyway, I'm just wondering if anyone knows how much $$ the pharmaceutical co. pay the Dr's. for every patient they get to take these type of drugs? Am I thinking negatively, or are these Dr's just padding there pockets at our expense?On a lighter note, I am biting the bullet and giving up on Rebif. I am so happy with what I am seeing/feeling with LDN I didn't want the Rebif to interfere. Thanks to all of you who encouraged me to give LDN a chance! Karin

[Guest guest]

This is one of the first things I found out about LDN! Only one of the CRABs (Copaxone) possibly can be taken with LDN. The LDN website is very clear on this issue. I took Avonex only but quit it 6 years ago when I knew It was doing nothing for me.

We need to be careful in saying that LDN 'stops MS progression.' Some have found this to NOT be true. LDN 'MAY' stop/slow progression. It is the only thing that has helped me.

Marcie

In a message dated 2/25/2005 9:23:35 PM Central Standard Time, betrue@... writes:

I am not afraid to stop the injections because the LDN stops the progression of MS in its tracks, even better than the injections. It is well worth the 'risk' to me.

What do others have to say about injections and LDN being taken simultaneously?

By the way, if we are taking the LDN, it counteracts morpine and codeine and other drugs like that too - we should be wearing a bracelet or something.

[Guest guest]

Hi Jan,

Thanks for the kind words. However I am clueless as to how to implement the site stuff. Does anyone know who set up the message board for LDN on ? Maybe they would know how to create a stationary site for different areas of LDN. Does anyone out there know how this can be accomplished?

Thanks

Aletha

Just curious........................My husband brought the mail in the other day and I received a invitation from the NMSS to attend a seminar on Tysabri, and guess who the speaker is............................my neuro!! Well this got me to thinking about his financial gain in trying to get me on this stuff, since he didn't even give me the time to look into LDN like I asked! Anyway, I'm just wondering if anyone knows how much $$ the pharmaceutical co. pay the Dr's. for every patient they get to take these type of drugs? Am I thinking negatively, or are these Dr's just padding there pockets at our expense?On a lighter note, I am biting the bullet and giving up on Rebif. I am so happy with what I am seeing/feeling with LDN I didn't want the Rebif to interfere. Thanks to all of you who encouraged me to give LDN a chance! Karin

[Guest guest]

Thank you so much for the new doctors to add to the list. The second phone #, however did not come through. I added them both to the list.

Thanks

Aletha

Just curious........................My husband brought the mail in the other day and I received a invitation from the NMSS to attend a seminar on Tysabri, and guess who the speaker is............................my neuro!! Well this got me to thinking about his financial gain in trying to get me on this stuff, since he didn't even give me the time to look into LDN like I asked! Anyway, I'm just wondering if anyone knows how much $$ the pharmaceutical co. pay the Dr's. for every patient they get to take these type of drugs? Am I thinking negatively, or are these Dr's just padding there pockets at our expense?On a lighter note, I am biting the bullet and giving up on Rebif. I am so happy with what I am seeing/feeling with LDN I didn't want the Rebif to interfere. Thanks to all of you who encouraged me to give LDN a chance! Karin

[Guest guest]

To the left of the message board at is a place for permanent

files, databases, links,Polls, etc. I'll try to copy it:

Files

Photos

Links

Database

Polls

Calendar

Permanent info and posts can be put in the files and other

appropriate sections. Not sure how. I'm sure some of you can

figure it out.

> Hi Jan,

> Thanks for the kind words. However I am clueless as to how to

implement the site stuff. Does anyone know who set up the message

board for LDN on ? Maybe they would know how to create a

stationary site for different areas of LDN. Does anyone out there

know how this can be accomplished?

> Thanks

> Aletha

[Guest guest]

Kim,

I'm sorry to hear this news. I was sure hoping that your son was one who would have the progression 'stop dead in its tracks.' Not that I don't wish that for everyone, but he is so young. Hang in there, and keep us posted.

Marcie

In a message dated 2/26/2005 4:58:51 PM Central Standard Time, petessweetheart@... writes:

We see the new neuro again next week to discuss further treatment. I am not ready to stop the LDN, because like all of you, I do believe it has promise. I don't believe it halts progression, though. And I think that is even more questionable with RRMS. Take care!

Kim

[Guest guest]

I have some family members who are geniouses with websites - t is their

business....I wonder if I can get them to build something for this purpose

(for free?) - they charge a lot! >:-( . Jan

[low dose naltrexone] Re: Re - Just curious

>

>

> To the left of the message board at is a place for permanent

> files, databases, links,Polls, etc. I'll try to copy it:

> Files

> Photos

> Links

> Database

> Polls

> Calendar

>

> Permanent info and posts can be put in the files and other

> appropriate sections. Not sure how. I'm sure some of you can

> figure it out.

>

>

>

>

>

>> Hi Jan,

>> Thanks for the kind words. However I am clueless as to how to

> implement the site stuff. Does anyone know who set up the message

> board for LDN on ? Maybe they would know how to create a

> stationary site for different areas of LDN. Does anyone out there

> know how this can be accomplished?

>> Thanks

>> Aletha

>

>

>

>

>

>

>

>

>

[Guest guest]

Thanks, Marcie...I will remember to adjust my description of stopping progression...

I am glad you told me about the Avonex doing nothering for you. My doctor won't feel so bad about me not taking it. Me either. Jan

Re: [low dose naltrexone] Re - Just curious

This is one of the first things I found out about LDN! Only one of the CRABs (Copaxone) possibly can be taken with LDN. The LDN website is very clear on this issue. I took Avonex only but quit it 6 years ago when I knew It was doing nothing for me. We need to be careful in saying that LDN 'stops MS progression.' Some have found this to NOT be true. LDN 'MAY' stop/slow progression. It is the only thing that has helped me. Marcie In a message dated 2/25/2005 9:23:35 PM Central Standard Time, betrue@... writes:

I am not afraid to stop the injections because the LDN stops the progression of MS in its tracks, even better than the injections. It is well worth the 'risk' to me. What do others have to say about injections and LDN being taken simultaneously? By the way, if we are taking the LDN, it counteracts morpine and codeine and other drugs like that too - we should be wearing a bracelet or something.

[Guest guest]

>

> We are not equipped to properly track these occurences, nor is the

information provided by an individual always accurate. It is very

easy to minimize things we don't want to see because we want very

badly for this drug to help us.

>

> I've been on LDN for over a year now. At first I saw wonderfully

exciting changes, just like you are experiencing. Quite of few of

those improvements faded away, and in some ways I am not as well as I

was a year ago. LDN is not a panacea, but it does have promise. It

very much needs serious study, and that will not occur without a very

organized effort. It doesn't have to be a drug company, but someone

needs to carefully track the progress of people taking LDN.

>

I am one of those who are on the fence about the trials regarding

LDN. I have so many questions that I know are not going to be

answered until / unless these trials are done. At the same time, I

am terrified of what will happen if they are as far as LDN goes.

is right. We are not equipped to track this. Do you think the

people who LDN has not helped are still anywhere around these message

boards? Why would they be? I know of 3 people personally who have

tried LDN without success, 2 continued to progress, and one was

unable to tolerate the side effects she had. None of them even look

at these forums any longer.

My son started LDN at 3 mg in June of 2004. He has been unable to

tolerate the 4.5 mg due to excessive stiffness. Initially, he did

really well. He still sees some benefits from it, including

increased energy level, which is important for a 17 year old. But

alot of the other benefits have faded a bit, and he's had some mild

symptoms over the past couple of months - nothing anywhere near as

severe as attacks he experienced pre-LDN, but he's had optic neuritis

off and on for almost 2 months, and transient numbness and tingling

in both sides of his body. At first we blamed it on the gall bladder

surgery he had in Dec. and the trauma it caused his body, but we are

starting to wonder if the LDN is still working for him. We're

terrified to take him off of it because we question whether that is

the only thing that is keeping him from going into a full blown

attack, or are these just milder attacks than what he had before?

Yes, these are all symtpoms he has had in the past at various times,

but the " revisiting " of old symptoms makes no sense to me medically.

Permanent damage is permanent damage. That is not what he is

experiencing. He is having mild attacks or relapses.

We see the new neuro again next week to discuss further treatment. I

am not ready to stop the LDN, because like all of you, I do believe

it has promise. I don't believe it halts progression, though. And I

think that is even more questionable with RRMS. Take care!

Kim

[Guest guest]

Kim, this really makes me wonder if Dr Lawrence has a better idea. Taking 2 days off every 10, or 1 each week may be a useful approach. Generally a drug loses effectiveness because your body developes a tolerance. That is the theory behind taking a break. Perhaps this approach would help some of us...

JT

....My son started LDN at 3 mg in June of 2004. He has been unable to tolerate the 4.5 mg due to excessive stiffness. Initially, he did really well. He still sees some benefits from it, including increased energy level, which is important for a 17 year old. But alot of the other benefits have faded a bit, and he's had some mild symptoms over the past couple of months - nothing anywhere near as severe as attacks he experienced pre-LDN, but he's had optic neuritis off and on for almost 2 months, and transient numbness and tingling in both sides of his body. At first we blamed it on the gall bladder surgery he had in Dec. and the trauma it caused his body, but we are starting to wonder if the LDN is still working for him. We're terrified to take him off of it because we question whether that is the only thing that is keeping him from going into a full blown attack, or are these just milder attacks than what he had before? Kim

[Guest guest]

Kim,

I know that at Colby's age it's a long shot, but have you had hormone levels checked? I think it might be worth checking into. I know that Pregnenolone and DHEA supplements have kept my ON at bay for four years now. Keep in mind, I'm 43, so my levels will naturally have decreased somewhat! Check the Mercola website for the possibility of hormones playing a role and take that info to the neuro too.

Marcie

In a message dated 2/27/2005 8:53:26 AM Central Standard Time, petessweetheart@... writes:

This weekend, he is feeling better. His ON is easing up, and the facial numbness is a bit better. Hopefully, he will be back in school tomorrow. I'll keep you posted.

Kim

[Guest guest]

> Kim, this really makes me wonder if Dr Lawrence has a better idea.

Taking 2 days off every 10, or 1 each week may be a useful approach.

Generally a drug loses effectiveness because your body developes a

tolerance. That is the theory behind taking a break. Perhaps this

approach would help some of us...

>

> JT

I've thought about that, too, . But it really hasn't been an

option for us, since my son has missed his LDN twice that we know of

and had MS symptoms arise just from accidently missing. (Once he

missed 3 days worth, and had some problems which resolved when he

started back on it, and another time he missed it one night and had

numbness and tingling for a few days.) So, it's never really been a

consideration for us since we don't want to throw him into an attack

every two weeks...He's missing enough school as it is these

days...When his eyes flare up, he will not go to school.

I agree that this method might work for some, and it's definitely

worth trying. LDN is different than a lot of meds in that it doesn't

have to build up in your body to begin to work - you can literally

see results immediately. We are only counting on it working for a

couple of hours a day and then it has 'done it's thing' until the

next dose. That should make you feel reasonably secure in skipping a

day or two, since you aren't really interrupting anything that is

dependent on a daily dosage. But, if you experience symptoms like my

son and others on LDN do when they miss a dose, it's not really worth

it. Also, I have to question this method for this reason...If you

are building up a tolerance at 3 mg. a day, then logically you should

be able to increase to 4.5 mg., but many cannot, my son included.

I'm really debating what to do right now. We have the appointment

with the new neuro this week to discuss treatment. He was open

minded enough to take the LDN info to look over, and we were hopeful

that he would prescribe it for Colby, since Dr. is obviously

out of business. I don't believe it's halting his progression any

longer, but I do believe it is holding this MonSter at bay a bit. I

am not feeling confident that he will continue to keep Colby on it if

we tell the truth about how he has been lately. The only way I think

he might do that is to put him on Copaxone as well.

The symptoms Colby is having are not severe. Don't get me wrong.

But they are enough to keep him out of school at times. The ON is

really hard for him, and when he has heaviness in his feet he cannot

manuever the stairs. He won't use the elevator, I've tried that. He

doesn't want to do anything to make himself stand out as different at

his age, and I don't have the heart to push it with him. Basically,

we're right back to where we were before we started LDN, waiting for

the big attack to hit and bring us all to our knees. We are still

hopeful, but losing hope on a daily basis as we watch him struggle.

This weekend, he is feeling better. His ON is easing up, and the

facial numbness is a bit better. Hopefully, he will be back in

school tomorrow. I'll keep you posted.

Kim

[Guest guest]

Hi,

Would you give me the address of the message board..please

Thanks,

BJ

-- [low dose naltrexone] Re: Re - Just curious

To the left of the message board at is a place for permanent

files, databases, links,Polls, etc. I'll try to copy it:

Files

Photos

Links

Database

Polls

Calendar

Permanent info and posts can be put in the files and other

appropriate sections. Not sure how. I'm sure some of you can

figure it out.

> Hi Jan,

> Thanks for the kind words. However I am clueless as to how to

implement the site stuff. Does anyone know who set up the message

board for LDN on ? Maybe they would know how to create a

stationary site for different areas of LDN. Does anyone out there

know how this can be accomplished?

> Thanks

> Aletha