Re: The good fight.

[Guest guest]

Tom, I hear what you're saying. Maybe the medical community will eventually hear us.. the fact that they realize they have been handling us all wrong means we now have the opportunity to HELP them learn what we've learned on our own.

As for the downtrodden posts, they are also a part of this sharing community. Most of us don't have anyone around who truly understands what it is like to be involved in this fight to keep the physical abilities that so many others take for granted. Now and then we need to vent to someone who DOES understand, and receive the kind of encouragement your letter provides. Hopefully when some of us are really discouraged there will always be a positive voice in the group to provide encouragement. Fighting the good fight is very difficult at times.

I'm going to try the Benfotiamine as soon as I can get some... did you order off the web or did you have a local source? And we all want to hear about your first steps. Let us know early in the day so I can make a celebratory dinner!

(MS)

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

From: tmbayuk

A Home away from Home a MS Support Board ; msalternatives ; mscured ; MS-Christians ; msersLife ; MSViews_Multiple_Sclerosis ; low dose naltrexone

Sent: Wednesday, March 17, 2004 6:35 AM

Subject: [low dose naltrexone] The good fight.

Hi Everyone,

I am concerned about a lot of posts lately that have been somewhat downtrodden. Please, please do not take offense, I know full well that some of have unbearable circumstances. I have had them myself.

My point is that we all have a great deal of positive, good things happening with ms. Many of us are making great strides forward living, coping and improving our ms circumstances.

There are so many things that we the ms'er can do to help ourself. Larry, a member of the LDN group has suggested listening to some of his mp-3's, that is a marvelous idea to encourage one's self and motivate ourself. There are many other things as well. The point is.....we have to bite the bullet. We have to act.

The medical community has published formal studies twice within the past year that indicate that they have been treating ms'ers with the wrong methods and in fact that it is not what they have thought all these years. This news can either be depressing or on the other hand it can be extremely exciting and invigorating. As far as I am concerned it gives more hope than anything to date. It gives credibility to the alternative things that are producing results.

Just this past week, I reduced my dose of LDN from 4.5 mg to 3.0 mg and started to take 100 mg. of "Benfotiamine" ( a lipid form of Thiamine or Vit. B1) that is absorbed more efficiently by our bodies. During the last 6 days, my spasms have almost ceased, my leg strength has increased, my balance has improved and I think that I will walk soon, even today. I have not walked in two years. I am so excited I can hardly contain myself. I have made more progress in the last six months that the last 20 years.

It surely seems to me that we the ms'er's have without doubt accomplished more with this disease and have more to look forward to than ever before. I know that some of us are in tough shape but life is still going to go on, we must make a way and we are making a way. Those of you that are depressed or severely disabled or discouraged talk to us, we will help you. We can help each other immeasurably.

Regards,

Tom

[Guest guest]

Hi ,

We surely do sometimes have our down times, myself included. It can be very helpful to vent at times and just get it out. Especially here in thses groups where there are folks that do in fact understand and accept where we might be during those times. That was exactly my point. This is where we will be understood and this is where we can help one another during those times.

I got the Benfotiamine from : Benfotiamine.Net., Inc.

6542 Hypoluxo Rd. Suite 114

Lake Worth, Fl. 33467

1-888-493-8014

http://www.benfotiamine.net

Regards,

Tom

[Guest guest]

What fantastic news Tom! Very inspirational!! I hope that

you do walk soon and even if not I hope you run in your dreams!

*hugs*

From: tmbayuk

[mailto:tmbayuk@...]

Sent: Wednesday, March 17, 2004

9:35 AM

A Home away from Home a MS

Support Board; msalternatives ; mscured ;

MS-Christians ; msersLife ;

MSViews_Multiple_Sclerosis ; low dose naltrexone

Subject: [low dose naltrexone] The

good fight.

Hi Everyone,

I am concerned about a lot of posts lately that have been

somewhat downtrodden. Please, please do not take offense, I know

full well that some of have unbearable circumstances. I have had them

myself.

My point is that we all have a great deal of positive, good

things happening with ms. Many of us are making great strides forward

living, coping and improving our ms circumstances.

There are so many things that we the ms'er can do to help

ourself. Larry, a member of the LDN group has suggested listening to some

of his mp-3's, that is a marvelous idea to encourage one's self and motivate

ourself. There are many other things as well. The point is.....we

have to bite the bullet. We have to act.

The medical community has published formal studies twice

within the past year that indicate that they have been treating ms'ers with the

wrong methods and in fact that it is not what they have thought all these

years. This news can either be depressing or on the other hand it can be

extremely exciting and invigorating. As far as I am concerned it gives

more hope than anything to date. It gives credibility to the alternative

things that are producing results.

Just this past week, I reduced my dose of LDN from 4.5 mg to

3.0 mg and started to take 100 mg. of " Benfotiamine " ( a lipid form

of Thiamine or Vit. B1) that is absorbed more efficiently by our

bodies. During the last 6 days, my spasms have almost ceased, my leg

strength has increased, my balance has improved and I think that I will walk

soon, even today. I have not walked in two years. I am so excited I

can hardly contain myself. I have made more progress in the last six

months that the last 20 years.

It surely seems to me that we the ms'er's have without doubt

accomplished more with this disease and have more to look forward to than ever

before. I know that some of us are in tough shape but life is still going

to go on, we must make a way and we are making a way. Those of you that

are depressed or severely disabled or discouraged talk to us, we will help

you. We can help each other immeasurably.

Regards,

Tom

[Guest guest]

Tom,

I, too, have never had a dream where I have MS. I have had dreams where I was walking/running and then it occurred to me that I had been healed!

I have been on LDN since 11/03/03, and I did see some immediate improvements. Now it seems to me that I am beginning to feel more sensations in my feet and legs! I know that LDN is only supposed to halt progression, but I can't help but hope that this means something more. How I long to get out of this wheelchair! LDN has offered hope that I didn't have before.

Marcie (MS)

[Guest guest]

HI,greetings from Tennessee springtime,

Wonderful to watch spring come to my mountains,

Anyway a Question, I see my neuro on the 3rd and my question is

I heard all of us talking about LDN halting the progression of MS but I have yet to see or find support for this to present my Doc. My neuro said he would research LDN but I can't count on him finding all the info. This Doc and I have sprited debates ( read fights) and I need to have support to make this claim. This is very important to me beause he has stated that if convinced he will put ALL his MS patients on LDN and oh how wonderful that would be! There are so many well imformed intellegent people on this list, I am counting on you.

He also said if he put all his MSers on LND he will track them, write a paper and make sure it is published! I believe with his conections he CAN do that!

One Doctor at a time as we so often say..

so please help! you can put it on the list or email me direct Zillba@...

Thanks

Peace,

ZilNever give up, never surrender

[Guest guest]

Hi Best,

Good for you, keep up the good work.

Regards,

Tom

[Guest guest]

Hi ,

Thank you and no doubt that we ARE in fact going to beat this ms. We, the ms'er's will do it with each other. It is surely becoming more and more apparent that those of us with ms are learning and making more progress than anyone else.

Regards,

Tom

[Guest guest]

Hi ,

Thank you, I an going to use my walker today......I'll keep you posted.

Interestingl enough, I have been diagnosed with ms since 1984 and have never had a dream with ms.

Regards,

Tom

[Guest guest]

Hi Zil,

I started LDN on July 8,2003. I have been diagnosed with ms since 1984. The very first night I had increased feeling in my feet and ankles. I could actually curl my toes, something I could not do for years. That night I got up once during the night to go to the bathroom, it had been 3-5 times for the past year. The next day I noticed increased leg strength and improved balance. Since that time there have been no further improvements but those that did occur have remained constant. It has been 8 months so far and there has been no further progression.

Regards,

Tom

[Guest guest]

Hi Tom,

I never have MS in my dreams either which is probably why I don't mind

fatigue. The more I sleep, the happier I am but I hate the feeling that I have

when I wake up and realize that I do have MS.

Chris

[Guest guest]

Hi Marcie,

I know what you mean and how you feel. I reduced my dose last week to 3.0 mg and am having increased feelings and strength in my legs. balance has also improved and I think I can use my walker. There is no doubt in my mind that things will continue to improve. Keep hoping, keep trying, we are going to win.

regards,

Tom

[Guest guest]

Hi Tom,

Myself likewise. I've read that some experience "vivid" dreams, I was just glad to have dreams

again as I don't really remember having any for the last 2-3 years? Go figure. Good luck with

the walker and getting up and going again.

All the best to you,

Jim

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

From: tmbayuk

low dose naltrexone

Sent: Thursday, March 18, 2004 7:07 AM

Subject: Re: [low dose naltrexone] The good fight.

Hi ,

Thank you, I an going to use my walker today......I'll keep you posted.

Interestingl enough, I have been diagnosed with ms since 1984 and have never had a dream with ms.

Regards,

Tom

[Guest guest]

Dear Tom,

Thanks for that uplifting post! You have expressed the postive

attitude that is helping to make you healthier. Thank goodness you

didn't give up! You deserve your excitement and I share it with you!!!

Love,

[Guest guest]

why don't you get him in touch with Dr Bihari?

> you.

> He also said if he put all his MSers on LND he will track them,

write a paper

> and make sure it is published! I believe with his conections he

[Guest guest]

Hi ,

Thank you, like Yogi says: "It ain't over until it's over". LOL

Regards,

Tom

[Guest guest]

That's right! And Yogi says some terrific things!

I'm pulling for ya, Tom!!

Love,

> Hi ,

> Thank you, like Yogi says: " It ain't over until it's over " . LOL

> Regards,

> Tom

[Guest guest]

Hi

thanks to all for the responses to help me with my neurologist.

Next question:

Anyone know of any long term users that have had a reduction of MS lesions on their MRIs??

I am determined to not only convince this neurologist but hold him to his word about a published paper! Together we are going to get this LDN paper published! when this happens you can bet I will send y'all a copy!

This not only grass roots, it is crab grass roots, you know how that spreads!

Peace,

ZilNever give up, never surrender

[Guest guest]

Thanks , I'm pulling for you too.

Regards,

Tom

[Guest guest]

Wow Zil, what determination! Thanks for all you efforts, I’m

sure your LDN

paper will be beneficial to us all!!!!

Best of luck,

--Original Message-----

From: zillba@...

[mailto:zillba@...]

Sent: Friday, March 19, 2004 7:08 AM

To:

low dose naltrexone

Subject: Re: [low dose naltrexone]

Re: The good fight.

Hi

thanks to all for the

responses to help me with my neurologist.

Next question:

Anyone know of any

long term users that have had a reduction of MS lesions on their MRIs??

I am determined to

not only convince this neurologist but hold him to his word about a published

paper! Together we are going to get this LDN paper published! when this happens

you can bet I will send y'all a copy!

This not only grass

roots, it is crab grass roots, you know how that spreads!

Peace,

Zil

Never give up, never surrender

[Guest guest]

Dear Group.

Please dont get me wrong I take LDN, I like it and am thankfu to DR B and all who got me onit. Howerver the longer I research for some science to help me on with my Neuro the stranger it gets? Below in black are pastes from the LDN webite. In blue my questions some of which I am sure to hear from MY Doc, others just from me.... Answers? Anyone?

Pleace

Zil

Clinically the results are strongly suggestive of efficacy. Ninety-eight to 99% of people treated with LDN experience no more disease progression,

why are these clinical results strongly suggestive while what is happening in OUR OWN bodies antidotal? 98-99-% experience no progression, where uis the clinical on that? or any kind of data?

research over the pUp to the present time, the question of "What controls the immune system?" has not been present in the curricula of medical colleges and the issue has not formed a part of the received wisdom of practicing physicians. Nonetheless, a body of the last two decades has pointed repeatedly to one's own endorphin secretions (our internal opioids) as playing the central role in the beneficial orchestration of the immune system, and recognition of the facts is growing ( This is is not a fact as stated above)They still dont know what controls the human immune Systems, seems like groups of doctors can make up facts , but groups of patients living the disease cannot! why no research here? It would strenghten the antidotal evidense a great deal, no?

from What is LDN

The brief blockade of opioid receptors between 2 a.m. and 4 a.m. that is caused by taking LDN at bedtime each night is believed to produce a prolonged up-regulation of vital elements of the immune system by causing an increase in endorphin and enkephalin production. Normal volunteers who have taken LDN in this fashion have been found to have much higher levels of beta-endorphins circulating in their blood in the following days. Animal research by I. Zagon, Ph.D., and his colleagues has shown a marked increase in metenkephalin levels as well. [Note: Additional information for Dr. Zagon can be found at the end of this page.]

Animal research does not reflect the humaan animal immune respose.

We just read about the fake"MS" injected into mice and studied has been proven usless, this must come as a should to some but we are wau different than rodants

LDN has virtually no side effects. Occasionally, during the first week's use of LDN, patients may complain of some difficulty sleeping. This rarely persists after the first week. Should it do so, dosage can be reduced from 4.5mg to 3mg nightly.

wSleeplessness? well on this list I have heard tens of complaints aboout stiffness some not helped by reduces to 3mg and some starting at 3mgs,,,,,,, this looks very much llike a side effect, and a common one. Not at all adressed

I must wonder about getting trial done on LDN and MS while all fo Dr b's researchh and published papers are about AIDs and HIV mmm not one thing about MS

from LDN and MS

Over the past few years, growing experience with the clinical use of LDN demonstrates its consistency in preventing further attacks in people with MS. In addition, a majority of such patients note reductions in spasticity and fatigue. As of mid-2003, there were over 140 such patients in Dr. Bihari's practice. None of them have ever experienced a fresh attack of MS while they maintained their regular LDN nightly therapy.

140 people with no relaspes and THIS is not worthy of a published artical??

You do not need a clinical trail to publish.

My Neurologist is going to publish with a handful If the idea is to get the word out as the site states why aren't we getting help from DR B?and once agian using the unpublished 140 as an example.

Over the past few years, growing experience with the clinical use of LDN demonstrates its consistency in preventing further attacks in people with MS. In addition, a majority of such patients note reductions in spasticity and fatigue. As of mid-2003, there were over 140 such patients in Dr. Bihari's practice. None of them have ever experienced a fresh attack of MS while they maintained their regular LDN nightly therapy.

In addition to the apparent ability of LDN to stop disease progression, approximately two-thirds of MS patients starting LDN have some symptomatic improvement generally apparent within the first few days. There are two types of such improvement.

No mention of how or why progression stops just it magicaly does

I do thank my lucky stars for finding LDN and no not want to appear ungrateful but I am trying to convince a Doctor here, and these kind of statements will just not fly witth him, in fact I am not sure they fly with me..... Simply put I thinhk I and all of us deserve to knnnnow how and why LDN halts MS progression. Because without it I should buy all the claims bt the ABCs as well as that fellow selling 1400 dollar vitamin packs with a water pirifier.Please can anyone help or hook me up with a science person who could. (tried DrB he would not return my calls, guess since I am not his patient)

Peace

Zil

[Guest guest]

You need to better understand the meaning of some of the terms you are

questioning. Within the context of these terms, many of the

statements do make sense. Have you put these questions to Dr.

B?

At 07:05 AM 3/20/2004, you wrote:

Dear

Group.

Please dont get me wrong I

take LDN, I like it and am thankfu to DR B and all who got me onit.

Howerver the longer I research for some science to help me on with

my Neuro the stranger it gets? Below in black are pastes from the

LDN webite. In blue my questions some of which I am sure to hear

from MY Doc, others just from me.... Answers? Anyone?

Pleace

Zil

Clinically the results are strongly suggestive of efficacy.

Ninety-eight to 99% of people treated with LDN experience no more disease

progression,

why are these clinical

results strongly suggestive while what is happening in OUR OWN bodies

antidotal? 98-99-% experience no progression, where uis the clinical on

that? or any kind of data?

research over the pUp to the present time, the question of

" What controls the immune system? " has not been present in the

curricula of medical colleges and the issue has not formed a part of the

received wisdom of practicing physicians. Nonetheless, a body of

the last two decades has pointed repeatedly to one's own endorphin

secretions (our internal opioids) as playing the central role in the

beneficial orchestration of the immune system, and recognition of the

facts is growing ( This is is not a fact as

stated above)They still dont know what controls the human immune

Systems, seems like groups of doctors can make up facts , but groups of

patients living the disease cannot! why no research here? It would

strenghten the antidotal evidense a great deal,

no?

from What is

LDN

The brief blockade of opioid receptors between 2 a.m. and 4 a.m. that is

caused by taking LDN at bedtime each night is believed to produce a

prolonged up-regulation of vital elements of the immune system by causing

an increase in endorphin and enkephalin production. Normal volunteers who

have taken LDN in this fashion have been found to have much higher levels

of beta-endorphins circulating in their blood in the following days.

Animal research by I. Zagon, Ph.D., and his colleagues has shown a marked

increase in metenkephalin levels as well. [Note: Additional information

for Dr. Zagon can be found at the end of this page.]

Animal research does not reflect the humaan animal

immune respose.

We just read

about the fake " MS " injected into mice and studied has been

proven usless, this must come as a should to some but we are wau

different than rodants

LDN has virtually no side effects. Occasionally, during the first week's

use of LDN, patients may complain of some difficulty sleeping. This

rarely persists after the first week. Should it do so, dosage can be

reduced from 4.5mg to 3mg nightly.

wSleeplessness? well on this list I have

heard tens of complaints aboout stiffness some not helped by

reduces to 3mg and some starting at 3mgs,,,,,,, this looks very much

llike a side effect, and a common one. Not at all adressed

I must wonder

about getting trial done on LDN and MS while all fo Dr

b's researchh and published papers are about AIDs and HIV mmm not

one thing about MS

from LDN and

MS

Over the past few years, growing experience with the clinical use of LDN

demonstrates its consistency in preventing further attacks in people with

MS. In addition, a majority of such patients note reductions in

spasticity and fatigue. As of mid-2003, there were over 140 such patients

in Dr. Bihari's practice. None of them have ever experienced a fresh

attack of MS while they maintained their regular LDN nightly

therapy.

140 people with no relaspes and THIS is not worthy

of a published artical??

You do not need a clinical trail to

publish.

My Neurologist is going to publish with a handful If the idea is to get

the word out as the site states why aren't we getting help from DR

B?and once agian using the unpublished 140 as an example.

Over the past few years, growing experience with the clinical use of LDN

demonstrates its consistency in preventing further attacks in people with

MS. In addition, a majority of such patients note reductions in

spasticity and fatigue. As of mid-2003, there were over 140 such patients

in Dr. Bihari's practice. None of them have ever experienced a fresh

attack of MS while they maintained their regular LDN nightly

therapy.

In addition to the apparent ability of LDN to stop disease progression,

approximately two-thirds of MS patients starting LDN have some

symptomatic improvement generally apparent within the first few days.

There are two types of such improvement.

No mention of how or why

progression stops just it magicaly does

I do thank my lucky stars for finding

LDN and no not want to appear ungrateful but I am trying to convince a

Doctor here, and these kind of statements will just not fly witth him, in

fact I am not sure they fly with me..... Simply put I thinhk I and

all of us deserve to knnnnow how and why LDN halts MS progression.

Because without it I should buy all the claims bt the ABCs as well as

that fellow selling 1400 dollar vitamin packs with a water

pirifier.Please can anyone help or hook me up with a science person who

could. (tried DrB he would not return my calls, guess since I am not his

patient)

Peace

Zil

[Guest guest]

jderviin (sorry don't know your name)

thank yoou for you reply. I do not mean to appear ignorant of terms,

Doctor B does not return my calls so no I have not been able to ask him or his fellows a question.

While some of the questions I pose are just curious things the one thing that I have been really searching for and cannot find is How does LDN halt the progression of MS? If in fact the answer is "we don't know but it happns to many people" I could accept that.

But it seems to me there would be something to back it up, improved or stable MRIs over time for example.

But that is the main thing how and or why does LND stop progression?

It seems like a simple question to which I cannot find an answer.

Am I starting to be a pain with this?

Thanks for any help you can offer.

Peace,

ZilNever give up, never surrender

[Guest guest]

Zil,

LDN works by building up or increasing the T and B cells in your immune

system. These are the cells critical to the level of immunity or

disease fighting abilities your body has. Thus, for MS, or the

other diseases that LDN appears to be effective for, you immune system is

becoming strong enough to hold the disease in check. It isn't

eliminating it, but keeping it from spreading. Also, there have

been a number of posts here by people saying that their MRIs have shown

stability and in some cases improvement.

Hope this helps

At 04:49 PM 3/20/2004, you wrote:

jderviin

(sorry don't know your name)

thank yoou for you reply. I do not mean to

appear ignorant of terms,

Doctor B does not return my

calls so no I have not been able to ask him or his fellows a

question.

While some of the questions

I pose are just curious things the one thing that I have been really

searching for and cannot find is How does LDN halt the progression of MS?

If in fact the answer is " we don't know but it happns to many

people " I could accept that.

But it seems to me there would be something to back it up, improved or

stable MRIs over time for example.

But that is the main thing how and or why does LND stop progression?

It seems like a simple question to which I cannot find an answer.

Am I starting to be a pain with this?

Thanks for any help you can offer.

Peace,

Zil

Never give up, never surrender

[Guest guest]

Hey Zil,

Saw your post about “Why” ldn stops progression.

I’m sure you took a look at the ldn

website, on there after searching through all the links, I believe I received a

response about that question that was short and simple but stopped the continued

search for me. LDN regulates our

immune system, this in turn stops that system from attacking our myelin, Now if you really want to get into other

research which states that it’s not our immune system attacking but our

cells responsible for producing myelin that die off to soon. This prevents the production of myelin

to be used for the outer coating of nerves bla bla bla I don’t know how medically

correct that was. . . but sometimes Zil, it hurts

rather then helps to know to much. . . lol

Stay informed, but even more important

know your body and what works best for you!

All the best,

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

From: zillba@...

[mailto:zillba@...]

Sent: Saturday, March 20, 2004

4:50 PM

To:

low dose naltrexone

Subject: Re: [low dose naltrexone]

Re: The good fight.

jderviin (sorry don't

know your name)

thank

yoou for you reply. I do not mean to appear ignorant of

terms,

Doctor B does not

return my calls so no I have not been able to ask him or his fellows a

question.

While some of the

questions I pose are just curious things the one thing that I have been really

searching for and cannot find is How does LDN halt the progression of MS? If in

fact the answer is " we don't know but it happns to many people " I could

accept that.

But it seems to me

there would be something to back it up, improved or stable MRIs over time for

example.

But that is the main

thing how and or why does LND stop progression?

It seems like a

simple question to which I cannot find an answer.

Am I starting to be a

pain with this?

Thanks for any help

you can offer.

Peace,

Zil

Never give up, never surrender

[Guest guest]

At this point I'm pretty content not understanding how or why it works. After all, I don't understand how aspirin works either. BUT, for this to get the widespread attention it needs, someone will need to define how and why it works or the medical community in general isn't going to listen... they will just keep calling it a placebo effect.

(MS)

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

From: Baden

low dose naltrexone

Sent: Monday, March 22, 2004 10:55 AM

Subject: RE: [low dose naltrexone] Re: The good fight.

Hey Zil,

Saw your post about “Why” ldn stops progression. I’m sure you took a look at the ldn website, on there after searching through all the links, I believe I received a response about that question that was short and simple but stopped the continued search for me. LDN regulates our immune system, this in turn stops that system from attacking our myelin, Now if you really want to get into other research which states that it’s not our immune system attacking but our cells responsible for producing myelin that die off to soon. This prevents the production of myelin to be used for the outer coating of nerves bla bla bla I don’t know how medically correct that was. . . but sometimes Zil, it hurts rather then helps to know to much. . . lol

Stay informed, but even more important know your body and what works best for you!

All the best,

-----Original Message-----From: zillba@... [mailto:zillba@...] Sent: Saturday, March 20, 2004 4:50 PMlow dose naltrexone Subject: Re: [low dose naltrexone] Re: The good fight.

jderviin (sorry don't know your name)

thank yoou for you reply. I do not mean to appear ignorant of terms,

Doctor B does not return my calls so no I have not been able to ask him or his fellows a question.

While some of the questions I pose are just curious things the one thing that I have been really searching for and cannot find is How does LDN halt the progression of MS? If in fact the answer is "we don't know but it happns to many people" I could accept that.

But it seems to me there would be something to back it up, improved or stable MRIs over time for example.

But that is the main thing how and or why does LND stop progression?

It seems like a simple question to which I cannot find an answer.

Am I starting to be a pain with this?

Thanks for any help you can offer.

Peace,

ZilNever give up, never surrender