RE: CAUTION: LDN Not effective For All With MS

[Guest guest]

This is the sad truth, LDN, just like ANY other treatment, doesnt work for everybody, anybody who thinks it does is kidding themself. That being said, I think, even if only anecdotedly, LDN has a better 'track record' than anything else. Of course, some good ol research and trials are needed.

[low dose naltrexone] CAUTION: LDN Not effective For All With MS

Hello,I believe it's important to let all know that this may not work for everyone with MS. Here's my story:I was originally seen by a neurologist when symptoms were moving very aggressively. My local neurologist prescribed me Copaxone in early 2000 before I was officially diagnosed due to probable MS from seeing the MRI results. Took Copaxone for around 6 months but it did nothing to stop progression. He referred me to a Harvard trained neurologist who runs an MS clinic at the state university hospital. After being seen here, I was finally diagnosed and hospitalized for a week of agressive treatment - 5 days solumedrol followed by Cytoxan infusion and official diagnosis of "agressive relapsing - remitting MS". This did put a stop to progression. Continued on Cytoxan for about 3 years taking monthly infusions as the dose crept up each month. Got to a point where the side effects were intollerable - after infusion, 2 1/2 weeks of feeling like crap and depressed followed by 1 1/2 good weeks, then start all over again with he next infusion. Stopped Cytoxan, then started Rebif, that went on for a couple years also with the crappy 'flu-like symptoms' which seemed worse than they should be. Neuro checked and it turned out my liver enzymes had shot up to >400 when the should be around 40. Stopped Rebif just before Thanksgiving of 2005.Now for my experience with LDN. I had originally tried it last year 2005 when Rebif was causing some trouble. Before starting LDN, I even set up an initial and follow-up appointment with Dr. Bihari over the phone which was very detailed and paid for it out of pocket since insurance didn't cover for him but I thought it was worth going to get expert advice. In the beginning, LDN at 4.5 or sometimes 3 mg. (when insomnia was an issue) worked very well. My energy level was superb, spirits and attitude was excellent and it actually did stop a relapse that I was just starting. But gradually after a few months the good effects began to wear off and the MS symptoms began to return more agressive around mid day. It was suggested that I take DL-Phenylalinine 500 mg. 2x/day. This did not work. The worse part of my symptoms was my back - spinal chord tingling, tightness, pain etc. which I am sure is disease activity in my spine. I eventually stopped and went back on Rebif but only for a short while as I mentioned earlier due to the liver enzyme issues. So, for a while after giving up on Rebif and noticing symptoms acting up again, I decided to give LDN one more try in February of this year. As before, it stopped a relapse dead in it's tracks but also as before the good effects are wearing off now after 6 straight months on LDN. I'm having the same problems as before, back pain, tingling, tightness which also causes my legs to get very weak where I can barely walk more than a few feet without supporting myself - and falling frequently. Many other functions are good - cognitive, visual etc. but bowel and bladder irregularities are apparent again due to MS activity in the spine. I have also been on a special diet ( www.direct-ms.org ) to try to halt this !@#$ disease. No gluten, dairy or high saturated fats etc - been on this diet for over a year and it hasn't seemed to help yet though I know I am eating very well. Have considered trying this Colloidal Silver treatment that I've heard about which supposedly attacks the HHV-6 virus implicated as a cause of MS. In conclusion, I have read recently that there are 4 MS disaese categories which may have different causes since all patients don't respond similarly to the same meds - I truly believe this since I have not responded well to many that I've already tried while others do. Will be seeing my neurologist on 9/6 after I mentioned to them the problems I'm having. Not sure what left to try. They want me to try a med called Cellcept which is an immunosuppresant but the side effects of this one scares me. I'm actually considering Tysabri again which I was originally supposed to be starting last spring just before it got cancelled. I know there are major risks with this but I'm so fed up with nothing else seeming to work. Any other bright ideas or suggestions out there ? Thanks for listening.Sincerely,FED UP WITH MS

[Guest guest]

Since nobody's medical history is known, and sometimes not even remembered by the patient, there's many factors involved we just don't know. The point being, it's not the LDN, it's the patient. The LDN don't know anyone's history, it can only do one thing, it's up to the body to do the rest. Sometimes it may be just ONE thing, one factor.. if other factors are missing or deficient, it just don't work.

Like prostate cancer, I'm sure there's a reason why it Specifically states "untreated". Once those radioactive seeds are planted, or any number of invasive procedures, LDN just won't help, apparently. I'm wondering if LDN would help bladder issues. My dad had the seeds and now 15 years later was having bladder issues. I tried to have him guinea pig LDN to see if it helped his bladder issues. But no, they gave him other drugs that made the problem worse and more permanent.

LDN is like a plug leak fix. You can fill small holes with it, it just won't fix the larger ones, and nothing was gonna fix the Titanic.

Are any of the surveys showing LDN seemingly working better for people who have done relatively little or no meds AT ALL? No a/ds, no ms injectibles, no steriods, neurontin, etc, etc... like totally 'untreated' MS?

The only thing I ever concerned myself with was antibiotics... I was given them quite often growing up, and a few times since 1991...

I'm not a fan of meds.. or even vitamins. I know some people who take a whole set of vitamins every day.. what happens to them if they run out (of money? LOL)... their body's gonna miss that level of vitamins.. whereas if you don't take vitamins, then if you do get sick and take some extras, wouldn't it help more then? I don't know... I pretty much only take LDN. I added B1 July 2005 that I started taking with the LDN, it's supposed to help with the mosquito bites... but then 14 days later I stopped using my cane that I needed to get around for a while and haven't used it since. I'm afraid to stop the B1 and find out that that's why I'm walking. LOL

Who really know... the body knows.. so it does just exactly what it can do.. and we all are really just clueless and have to ponder explanations for what we see and think we know. Whatever is going on behind the scenes from our information banks is doing exactly what it's supposed to.

Good luck to us all.

btw, I never got on the road.. Ernesto had other plans.

[low dose naltrexone] CAUTION: LDN Not effective For All With MS

Hello,I believe it's important to let all know that this may not work for everyone with MS. Here's my story:I was originally seen by a neurologist when symptoms were moving very aggressively. My local neurologist prescribed me Copaxone in early 2000 before I was officially diagnosed due to probable MS from seeing the MRI results. Took Copaxone for around 6 months but it did nothing to stop progression. He referred me to a Harvard trained neurologist who runs an MS clinic at the state university hospital. After being seen here, I was finally diagnosed and hospitalized for a week of agressive treatment - 5 days solumedrol followed by Cytoxan infusion and official diagnosis of "agressive relapsing - remitting MS". This did put a stop to progression. Continued on Cytoxan for about 3 years taking monthly infusions as the dose crept up each month. Got to a point where the side effects were intollerable - after infusion, 2 1/2 weeks of feeling like crap and depressed followed by 1 1/2 good weeks, then start all over again with he next infusion. Stopped Cytoxan, then started Rebif, that went on for a couple years also with the crappy 'flu-like symptoms' which seemed worse than they should be. Neuro checked and it turned out my liver enzymes had shot up to >400 when the should be around 40. Stopped Rebif just before Thanksgiving of 2005.Now for my experience with LDN. I had originally tried it last year 2005 when Rebif was causing some trouble. Before starting LDN, I even set up an initial and follow-up appointment with Dr. Bihari over the phone which was very detailed and paid for it out of pocket since insurance didn't cover for him but I thought it was worth going to get expert advice. In the beginning, LDN at 4.5 or sometimes 3 mg. (when insomnia was an issue) worked very well. My energy level was superb, spirits and attitude was excellent and it actually did stop a relapse that I was just starting. But gradually after a few months the good effects began to wear off and the MS symptoms began to return more agressive around mid day. It was suggested that I take DL-Phenylalinine 500 mg. 2x/day. This did not work. The worse part of my symptoms was my back - spinal chord tingling, tightness, pain etc. which I am sure is disease activity in my spine. I eventually stopped and went back on Rebif but only for a short while as I mentioned earlier due to the liver enzyme issues. So, for a while after giving up on Rebif and noticing symptoms acting up again, I decided to give LDN one more try in February of this year. As before, it stopped a relapse dead in it's tracks but also as before the good effects are wearing off now after 6 straight months on LDN. I'm having the same problems as before, back pain, tingling, tightness which also causes my legs to get very weak where I can barely walk more than a few feet without supporting myself - and falling frequently. Many other functions are good - cognitive, visual etc. but bowel and bladder irregularities are apparent again due to MS activity in the spine. I have also been on a special diet ( www.direct-ms.org ) to try to halt this !@#$ disease. No gluten, dairy or high saturated fats etc - been on this diet for over a year and it hasn't seemed to help yet though I know I am eating very well. Have considered trying this Colloidal Silver treatment that I've heard about which supposedly attacks the HHV-6 virus implicated as a cause of MS. In conclusion, I have read recently that there are 4 MS disaese categories which may have different causes since all patients don't respond similarly to the same meds - I truly believe this since I have not responded well to many that I've already tried while others do. Will be seeing my neurologist on 9/6 after I mentioned to them the problems I'm having. Not sure what left to try. They want me to try a med called Cellcept which is an immunosuppresant but the side effects of this one scares me. I'm actually considering Tysabri again which I was originally supposed to be starting last spring just before it got cancelled. I know there are major risks with this but I'm so fed up with nothing else seeming to work. Any other bright ideas or suggestions out there ? Thanks for listening.Sincerely,FED UP WITH MS

[Guest guest]

Have you thought about your symptoms in a more global way? Just

getting rid of the label and trying to figure out what may be the

basis for them?

A simple hair test can give you much information on whether you may

be dealing with heavy metal toxicity. Older texts of medicine[1970's

vintage],such as Cecil's, have more info on this than the newer

versions.

Please see below for how to do this

http://home.earthlink.net/~moriam/

The following group also has a wealth of info in their files re this

/

A urine porphyrins test remains a reliable mainframe standard for

heavy metal toxicity You can find info/interpretations for several

metals that this measures at

http://www.safeminds.org/

This test can be self ordered @ http://www.labbio.net/

[about $125, I think]

Several years ago when I was just discovering the biomedical

treatment info for our daughter who has labels of PDD[pervasive

developmental delay], MR, seizure disorder, immune function disorder,

hypothyroidism [among others], my aunt was given a diagnosis of

focal myelopathy after she developed a slight, one sided limp. It

progressed to more substantial weakness, again seemingly one sided

and was given a label of benign spinal myelopathy. After about 1.5

yrs of symptoms, she was labeled with als. Shortly before her death,

she finally decided to get a hair test done. It counted out toxic by

several methods of looking at it. She never had the porphyrins

testing.

I was guided to this group several months ago as our daughter was

just beginning ldn. I'm constantly amazed by the similarity of

symptoms that folks present with those of the children/young adults

labeled `autistic.' It seems to me that the biological insult/toxic

exposure that has finally pushed many of the adults into illness just

came at a later stage in life than that of the children who have

other `labels'.

>

> Hello,

> I believe it's important to let all know that this may not work for

> everyone with MS. Here's my story:

> I was originally seen by a neurologist when symptoms were moving

very

> aggressively. My local neurologist prescribed me Copaxone in early

> 2000 before I was officially diagnosed due to probable MS from

seeing

> the MRI results. Took Copaxone for around 6 months but it did

nothing

> to stop progression. He referred me to a Harvard trained

neurologist

> who runs an MS clinic at the state university hospital. After being

> seen here, I was finally diagnosed and hospitalized for a week of

> agressive treatment - 5 days solumedrol followed by Cytoxan

infusion

> and official diagnosis of " agressive relapsing - remitting MS " .

This

> did put a stop to progression. Continued on Cytoxan for about 3

years

> taking monthly infusions as the dose crept up each month. Got to a

> point where the side effects were intollerable - after infusion, 2

> 1/2 weeks of feeling like crap and depressed followed by 1 1/2 good

> weeks, then start all over again with he next infusion. Stopped

> Cytoxan, then started Rebif, that went on for a couple years also

> with the crappy 'flu-like symptoms' which seemed worse than they

> should be. Neuro checked and it turned out my liver enzymes had

shot

> up to >400 when the should be around 40. Stopped Rebif just before

> Thanksgiving of 2005.

> Now for my experience with LDN. I had originally tried it last

> year 2005 when Rebif was causing some trouble. Before starting LDN,

I

> even set up an initial and follow-up appointment with Dr. Bihari

over

> the phone which was very detailed and paid for it out of pocket

since

> insurance didn't cover for him but I thought it was worth going to

> get expert advice. In the beginning, LDN at 4.5 or sometimes 3 mg.

> (when insomnia was an issue) worked very well. My

> energy level was superb, spirits and attitude was excellent and it

> actually did stop a relapse that I was just starting. But gradually

> after a few months the good effects began to wear off and the MS

> symptoms began to return more agressive around mid day. It was

> suggested that I take DL-Phenylalinine 500 mg. 2x/day. This did not

> work. The worse part of my symptoms was my back - spinal chord

> tingling, tightness, pain etc. which I am sure is disease activity

in

> my spine. I eventually stopped and went back on Rebif but only for

a

> short while as I mentioned earlier due to the liver enzyme issues.

> So, for a while after giving up on Rebif and noticing symptoms

acting

> up again, I decided to give LDN one more try in February of this

> year. As before, it stopped a relapse dead in it's tracks but also

as

> before the good effects are wearing off now after 6 straight months

> on LDN. I'm having the same problems as before, back pain,

tingling,

> tightness which also causes my legs to get very weak where I can

> barely walk more than a few feet without supporting myself - and

> falling frequently. Many other functions are good - cognitive,

visual

> etc. but bowel and bladder irregularities are apparent again due to

> MS activity in the spine. I have also been on a special diet (

> www.direct-ms.org ) to try to halt this !@#$ disease. No gluten,

> dairy or high saturated fats etc - been on this diet for over a

year

> and it hasn't seemed to help yet though I know I am eating very

well.

> Have considered trying this Colloidal Silver treatment that I've

> heard about which supposedly attacks the HHV-6 virus implicated as

a

> cause of MS.

> In conclusion, I have read recently that there are 4 MS disaese

> categories which may have different causes since all patients don't

> respond similarly to the same meds - I truly believe this since I

> have not responded well to many that I've already tried while

others

> do.

> Will be seeing my neurologist on 9/6 after I mentioned to them the

> problems I'm having. Not sure what left to try. They want me to try

a

> med called Cellcept which is an immunosuppresant but the side

effects

> of this one scares me. I'm actually considering Tysabri again which

I

> was originally supposed to be starting last spring just before it

got

> cancelled. I know there are major risks with this but I'm so fed up

> with nothing else seeming to work. Any other bright ideas or

> suggestions out there ? Thanks for listening.

> Sincerely,

> FED UP WITH MS

>

[Guest guest]

Read with your post with intrest. Yea, MS sucks .......... I know

that LDN might not work. Keep us posted, as I will.

>

> Hello,

> I believe it's important to let all know that this may not work

for

> everyone with MS. Here's my story:

> I was originally seen by a neurologist when symptoms were moving

very

> aggressively. My local neurologist prescribed me Copaxone in early

> 2000 before I was officially diagnosed due to probable MS from

seeing

> the MRI results. Took Copaxone for around 6 months but it did

nothing

> to stop progression. He referred me to a Harvard trained

neurologist

> who runs an MS clinic at the state university hospital. After

being

> seen here, I was finally diagnosed and hospitalized for a week of

> agressive treatment - 5 days solumedrol followed by Cytoxan

infusion

> and official diagnosis of " agressive relapsing - remitting MS " .

This

> did put a stop to progression. Continued on Cytoxan for about 3

years

> taking monthly infusions as the dose crept up each month. Got to a

> point where the side effects were intollerable - after infusion, 2

> 1/2 weeks of feeling like crap and depressed followed by 1 1/2

good

> weeks, then start all over again with he next infusion. Stopped

> Cytoxan, then started Rebif, that went on for a couple years also

> with the crappy 'flu-like symptoms' which seemed worse than they

> should be. Neuro checked and it turned out my liver enzymes had

shot

> up to >400 when the should be around 40. Stopped Rebif just before

> Thanksgiving of 2005.

> Now for my experience with LDN. I had originally tried it last

> year 2005 when Rebif was causing some trouble. Before starting

LDN, I

> even set up an initial and follow-up appointment with Dr. Bihari

over

> the phone which was very detailed and paid for it out of pocket

since

> insurance didn't cover for him but I thought it was worth going to

> get expert advice. In the beginning, LDN at 4.5 or sometimes 3 mg.

> (when insomnia was an issue) worked very well. My

> energy level was superb, spirits and attitude was excellent and it

> actually did stop a relapse that I was just starting. But

gradually

> after a few months the good effects began to wear off and the MS

> symptoms began to return more agressive around mid day. It was

> suggested that I take DL-Phenylalinine 500 mg. 2x/day. This did

not

> work. The worse part of my symptoms was my back - spinal chord

> tingling, tightness, pain etc. which I am sure is disease activity

in

> my spine. I eventually stopped and went back on Rebif but only for

a

> short while as I mentioned earlier due to the liver enzyme issues.

> So, for a while after giving up on Rebif and noticing symptoms

acting

> up again, I decided to give LDN one more try in February of this

> year. As before, it stopped a relapse dead in it's tracks but also

as

> before the good effects are wearing off now after 6 straight

months

> on LDN. I'm having the same problems as before, back pain,

tingling,

> tightness which also causes my legs to get very weak where I can

> barely walk more than a few feet without supporting myself - and

> falling frequently. Many other functions are good - cognitive,

visual

> etc. but bowel and bladder irregularities are apparent again due

to

> MS activity in the spine. I have also been on a special diet (

> www.direct-ms.org ) to try to halt this !@#$ disease. No gluten,

> dairy or high saturated fats etc - been on this diet for over a

year

> and it hasn't seemed to help yet though I know I am eating very

well.

> Have considered trying this Colloidal Silver treatment that I've

> heard about which supposedly attacks the HHV-6 virus implicated as

a

> cause of MS.

> In conclusion, I have read recently that there are 4 MS disaese

> categories which may have different causes since all patients

don't

> respond similarly to the same meds - I truly believe this since I

> have not responded well to many that I've already tried while

others

> do.

> Will be seeing my neurologist on 9/6 after I mentioned to them the

> problems I'm having. Not sure what left to try. They want me to

try a

> med called Cellcept which is an immunosuppresant but the side

effects

> of this one scares me. I'm actually considering Tysabri again

which I

> was originally supposed to be starting last spring just before it

got

> cancelled. I know there are major risks with this but I'm so fed

up

> with nothing else seeming to work. Any other bright ideas or

> suggestions out there ? Thanks for listening.

> Sincerely,

> FED UP WITH MS

>

[Guest guest]

Dear Fed up with MS, (I think that

could be anyone who has it)

You did not mention the doses you were

taking each time. Seems like the folks on this site have to find the dose that

works the best for them. Don’t know, but after reading your post that is

what came to mind. How about this eap shot that Kathy has been taking? Conni

Re: [low dose naltrexone]

CAUTION: LDN Not effective For All With MS

This is the sad truth, LDN, just

like ANY other treatment, doesnt work for everybody, anybody who thinks it does

is kidding themself. That being said, I think, even if only anecdotedly, LDN

has a better 'track record' than anything else. Of course, some good ol

research and trials are needed.

[low dose naltrexone] CAUTION: LDN Not effective For All With MS

Hello,

I believe it's important to let all know that this may not work for

everyone with MS. Here's my story:

I was originally seen by a neurologist when symptoms were moving very

aggressively. My local neurologist prescribed me Copaxone in early

2000 before I was officially diagnosed due to probable MS from seeing

the MRI results. Took Copaxone for around 6 months but it did nothing

to stop progression. He referred me to a Harvard trained neurologist

who runs an MS clinic at the state university hospital. After being

seen here, I was finally diagnosed and hospitalized for a week of

agressive treatment - 5 days solumedrol followed by Cytoxan infusion

and official diagnosis of " agressive relapsing - remitting MS " . This

did put a stop to progression. Continued on Cytoxan for about 3 years

taking monthly infusions as the dose crept up each month. Got to a

point where the side effects were intollerable - after infusion, 2

1/2 weeks of feeling like crap and depressed followed by 1 1/2 good

weeks, then start all over again with he next infusion. Stopped

Cytoxan, then started Rebif, that went on for a couple years also

with the crappy 'flu-like symptoms' which seemed worse than they

should be. Neuro checked and it turned out my liver enzymes had shot

up to >400 when the should be around 40. Stopped Rebif just before

Thanksgiving of 2005.

Now for my experience with LDN. I had originally tried it last

year 2005 when Rebif was causing some trouble. Before starting LDN, I

even set up an initial and follow-up appointment with Dr. Bihari over

the phone which was very detailed and paid for it out of pocket since

insurance didn't cover for him but I thought it was worth going to

get expert advice. In the beginning, LDN at 4.5 or sometimes 3 mg.

(when insomnia was an issue) worked very well. My

energy level was superb, spirits and attitude was excellent and it

actually did stop a relapse that I was just starting. But gradually

after a few months the good effects began to wear off and the MS

symptoms began to return more agressive around mid day. It was

suggested that I take DL-Phenylalinine 500 mg. 2x/day. This did not

work. The worse part of my symptoms was my back - spinal chord

tingling, tightness, pain etc. which I am sure is disease activity in

my spine. I eventually stopped and went back on Rebif but only for a

short while as I mentioned earlier due to the liver enzyme issues.

So, for a while after giving up on Rebif and noticing symptoms acting

up again, I decided to give LDN one more try in February of this

year. As before, it stopped a relapse dead in it's tracks but also as

before the good effects are wearing off now after 6 straight months

on LDN. I'm having the same problems as before, back pain, tingling,

tightness which also causes my legs to get very weak where I can

barely walk more than a few feet without supporting myself - and

falling frequently. Many other functions are good - cognitive, visual

etc. but bowel and bladder irregularities are apparent again due to

MS activity in the spine. I have also been on a special diet (

www.direct-ms.org ) to try to halt this !@#$ disease. No gluten,

dairy or high saturated fats etc - been on this diet for over a year

and it hasn't seemed to help yet though I know I am eating very well.

Have considered trying this Colloidal Silver treatment that I've

heard about which supposedly attacks the HHV-6 virus implicated as a

cause of MS.

In conclusion, I have read recently that there are 4 MS disaese

categories which may have different causes since all patients don't

respond similarly to the same meds - I truly believe this since I

have not responded well to many that I've already tried while others

do.

Will be seeing my neurologist on 9/6 after I mentioned to them the

problems I'm having. Not sure what left to try. They want me to try a

med called Cellcept which is an immunosuppresant but the side effects

of this one scares me. I'm actually considering Tysabri again which I

was originally supposed to be starting last spring just before it got

cancelled. I know there are major risks with this but I'm so fed up

with nothing else seeming to work. Any other bright ideas or

suggestions out there ? Thanks for listening.

Sincerely,

FED UP WITH MS

[Guest guest]

Hello Conni,

Thanks for the reply. As far as the dose of LDN, I've been taking the

recommended 3 mg or 4.5 mg. When the insomnia was too much of a

problem (due to too much endorphin action) I would drop down to 3 mg.

but never below 3 mg. which has no action. Have not much knowledge

about this calcium EAP. Will check into it. Thanks.

>

Andre (FEDUP)

>

> Dear Fed up with MS, (I think that could be anyone who has it)

>

>

>

> You did not mention the doses you were taking each time. Seems

like the

> folks on this site have to find the dose that works the best for

them.

> Don't know, but after reading your post that is what came to mind.

How

> about this eap shot that Kathy has been taking? Conni

>

>

>

> > Re: [low dose naltrexone] CAUTION: LDN Not effective For All

With MS

>

>

>

> This is the sad truth, LDN, just like ANY other treatment, doesnt

work for

> everybody, anybody who thinks it does is kidding themself. That

being said,

> I think, even if only anecdotedly, LDN has a better 'track record'

than

> anything else. Of course, some good ol research and trials are

needed.

>

> [low dose naltrexone] CAUTION: LDN Not effective For All

With MS

>

>

>

> Hello,

> I believe it's important to let all know that this may not work for

> everyone with MS. Here's my story:

> I was originally seen by a neurologist when symptoms were moving

very

> aggressively. My local neurologist prescribed me Copaxone in early

> 2000 before I was officially diagnosed due to probable MS from

seeing

> the MRI results. Took Copaxone for around 6 months but it did

nothing

> to stop progression. He referred me to a Harvard trained

neurologist

> who runs an MS clinic at the state university hospital. After being

> seen here, I was finally diagnosed and hospitalized for a week of

> agressive treatment - 5 days solumedrol followed by Cytoxan

infusion

> and official diagnosis of " agressive relapsing - remitting MS " .

This

> did put a stop to progression. Continued on Cytoxan for about 3

years

> taking monthly infusions as the dose crept up each month. Got to a

> point where the side effects were intollerable - after infusion, 2

> 1/2 weeks of feeling like crap and depressed followed by 1 1/2 good

> weeks, then start all over again with he next infusion. Stopped

> Cytoxan, then started Rebif, that went on for a couple years also

> with the crappy 'flu-like symptoms' which seemed worse than they

> should be. Neuro checked and it turned out my liver enzymes had

shot

> up to >400 when the should be around 40. Stopped Rebif just before

> Thanksgiving of 2005.

> Now for my experience with LDN. I had originally tried it last

> year 2005 when Rebif was causing some trouble. Before starting LDN,

I

> even set up an initial and follow-up appointment with Dr. Bihari

over

> the phone which was very detailed and paid for it out of pocket

since

> insurance didn't cover for him but I thought it was worth going to

> get expert advice. In the beginning, LDN at 4.5 or sometimes 3 mg.

> (when insomnia was an issue) worked very well. My

> energy level was superb, spirits and attitude was excellent and it

> actually did stop a relapse that I was just starting. But gradually

> after a few months the good effects began to wear off and the MS

> symptoms began to return more agressive around mid day. It was

> suggested that I take DL-Phenylalinine 500 mg. 2x/day. This did not

> work. The worse part of my symptoms was my back - spinal chord

> tingling, tightness, pain etc. which I am sure is disease activity

in

> my spine. I eventually stopped and went back on Rebif but only for

a

> short while as I mentioned earlier due to the liver enzyme issues.

> So, for a while after giving up on Rebif and noticing symptoms

acting

> up again, I decided to give LDN one more try in February of this

> year. As before, it stopped a relapse dead in it's tracks but also

as

> before the good effects are wearing off now after 6 straight months

> on LDN. I'm having the same problems as before, back pain,

tingling,

> tightness which also causes my legs to get very weak where I can

> barely walk more than a few feet without supporting myself - and

> falling frequently. Many other functions are good - cognitive,

visual

> etc. but bowel and bladder irregularities are apparent again due to

> MS activity in the spine. I have also been on a special diet (

> www.direct-ms.org ) to try to halt this !@#$ disease. No gluten,

> dairy or high saturated fats etc - been on this diet for over a

year

> and it hasn't seemed to help yet though I know I am eating very

well.

> Have considered trying this Colloidal Silver treatment that I've

> heard about which supposedly attacks the HHV-6 virus implicated as

a

> cause of MS.

> In conclusion, I have read recently that there are 4 MS disaese

> categories which may have different causes since all patients don't

> respond similarly to the same meds - I truly believe this since I

> have not responded well to many that I've already tried while

others

> do.

> Will be seeing my neurologist on 9/6 after I mentioned to them the

> problems I'm having. Not sure what left to try. They want me to try

a

> med called Cellcept which is an immunosuppresant but the side

effects

> of this one scares me. I'm actually considering Tysabri again which

I

> was originally supposed to be starting last spring just before it

got

> cancelled. I know there are major risks with this but I'm so fed up

> with nothing else seeming to work. Any other bright ideas or

> suggestions out there ? Thanks for listening.

> Sincerely,

> FED UP WITH MS

>

[Guest guest]

KATHY, mykittypaws@... is on the eap, and has all the information.

Kathy, are you there??? I am sure she will see this or you can email her

privately to ask her about it. Let us know how you are doing. Conni

Re: [low dose naltrexone] CAUTION: LDN Not effective For All

With MS

>

>

>

> This is the sad truth, LDN, just like ANY other treatment, doesnt

work for

> everybody, anybody who thinks it does is kidding themself. That

being said,

> I think, even if only anecdotedly, LDN has a better 'track record'

than

> anything else. Of course, some good ol research and trials are

needed.

>

> [low dose naltrexone] CAUTION: LDN Not effective For All

With MS

>

>

>

> Hello,

> I believe it's important to let all know that this may not work for

> everyone with MS. Here's my story:

> I was originally seen by a neurologist when symptoms were moving

very

> aggressively. My local neurologist prescribed me Copaxone in early

> 2000 before I was officially diagnosed due to probable MS from

seeing

> the MRI results. Took Copaxone for around 6 months but it did

nothing

> to stop progression. He referred me to a Harvard trained

neurologist

> who runs an MS clinic at the state university hospital. After being

> seen here, I was finally diagnosed and hospitalized for a week of

> agressive treatment - 5 days solumedrol followed by Cytoxan

infusion

> and official diagnosis of " agressive relapsing - remitting MS " .

This

> did put a stop to progression. Continued on Cytoxan for about 3

years

> taking monthly infusions as the dose crept up each month. Got to a

> point where the side effects were intollerable - after infusion, 2

> 1/2 weeks of feeling like crap and depressed followed by 1 1/2 good

> weeks, then start all over again with he next infusion. Stopped

> Cytoxan, then started Rebif, that went on for a couple years also

> with the crappy 'flu-like symptoms' which seemed worse than they

> should be. Neuro checked and it turned out my liver enzymes had

shot

> up to >400 when the should be around 40. Stopped Rebif just before

> Thanksgiving of 2005.

> Now for my experience with LDN. I had originally tried it last

> year 2005 when Rebif was causing some trouble. Before starting LDN,

I

> even set up an initial and follow-up appointment with Dr. Bihari

over

> the phone which was very detailed and paid for it out of pocket

since

> insurance didn't cover for him but I thought it was worth going to

> get expert advice. In the beginning, LDN at 4.5 or sometimes 3 mg.

> (when insomnia was an issue) worked very well. My

> energy level was superb, spirits and attitude was excellent and it

> actually did stop a relapse that I was just starting. But gradually

> after a few months the good effects began to wear off and the MS

> symptoms began to return more agressive around mid day. It was

> suggested that I take DL-Phenylalinine 500 mg. 2x/day. This did not

> work. The worse part of my symptoms was my back - spinal chord

> tingling, tightness, pain etc. which I am sure is disease activity

in

> my spine. I eventually stopped and went back on Rebif but only for

a

> short while as I mentioned earlier due to the liver enzyme issues.

> So, for a while after giving up on Rebif and noticing symptoms

acting

> up again, I decided to give LDN one more try in February of this

> year. As before, it stopped a relapse dead in it's tracks but also

as

> before the good effects are wearing off now after 6 straight months

> on LDN. I'm having the same problems as before, back pain,

tingling,

> tightness which also causes my legs to get very weak where I can

> barely walk more than a few feet without supporting myself - and

> falling frequently. Many other functions are good - cognitive,

visual

> etc. but bowel and bladder irregularities are apparent again due to

> MS activity in the spine. I have also been on a special diet (

> www.direct-ms.org ) to try to halt this !@#$ disease. No gluten,

> dairy or high saturated fats etc - been on this diet for over a

year

> and it hasn't seemed to help yet though I know I am eating very

well.

> Have considered trying this Colloidal Silver treatment that I've

> heard about which supposedly attacks the HHV-6 virus implicated as

a

> cause of MS.

> In conclusion, I have read recently that there are 4 MS disaese

> categories which may have different causes since all patients don't

> respond similarly to the same meds - I truly believe this since I

> have not responded well to many that I've already tried while

others

> do.

> Will be seeing my neurologist on 9/6 after I mentioned to them the

> problems I'm having. Not sure what left to try. They want me to try

a

> med called Cellcept which is an immunosuppresant but the side

effects

> of this one scares me. I'm actually considering Tysabri again which

I

> was originally supposed to be starting last spring just before it

got

> cancelled. I know there are major risks with this but I'm so fed up

> with nothing else seeming to work. Any other bright ideas or

> suggestions out there ? Thanks for listening.

> Sincerely,

> FED UP WITH MS

>

[Guest guest]

Thanks for the reply Larry,

I do believe that LDN is a good med but for some reason it's my brain

that after a few months gradually seems to stop producing the

endorphins. I remember in the first couple months, purposely getting

up at 2 or 3 AM just to check the effects and WOW, I would be

surprised at how good I felt. I also know I was getting good meds

from Skip's Pharmacy in Fla. which is a good compounding source. I

just wish there was more research on what it is about the brain that

produces these endorphins and gets the immune system back on

track...........and if the brain is lacking in it's own endorphin

production how to modulate it if LDN is not enough. NEED MORE

RESEARCH ON ENDORPHINS AND IT'S EFFECT ON THE IMMUNE SYSTEM. SUPPOSE

THAT WON'T HAPPEN IF THE BIG PHARMACEUTICALS DON'T SEE ANY MONEY AT

THE END OF THE R & D !!!

>

> Since nobody's medical history is known, and sometimes not even

remembered by the patient, there's many factors involved we just

don't know. The point being, it's not the LDN, it's the patient.

The LDN don't know anyone's history, it can only do one thing, it's

up to the body to do the rest. Sometimes it may be just ONE thing,

one factor.. if other factors are missing or deficient, it just don't

work.

>

> Like prostate cancer, I'm sure there's a reason why it Specifically

states " untreated " . Once those radioactive seeds are planted, or any

number of invasive procedures, LDN just won't help, apparently. I'm

wondering if LDN would help bladder issues. My dad had the seeds and

now 15 years later was having bladder issues. I tried to have him

guinea pig LDN to see if it helped his bladder issues. But no, they

gave him other drugs that made the problem worse and more permanent.

>

>

> LDN is like a plug leak fix. You can fill small holes with it, it

just won't fix the larger ones, and nothing was gonna fix the Titanic.

>

> Are any of the surveys showing LDN seemingly working better for

people who have done relatively little or no meds AT ALL? No a/ds,

no ms injectibles, no steriods, neurontin, etc, etc... like

totally 'untreated' MS?

>

> The only thing I ever concerned myself with was antibiotics... I

was given them quite often growing up, and a few times since 1991...

>

> I'm not a fan of meds.. or even vitamins. I know some people who

take a whole set of vitamins every day.. what happens to them if they

run out (of money? LOL)... their body's gonna miss that level of

vitamins.. whereas if you don't take vitamins, then if you do get

sick and take some extras, wouldn't it help more then? I don't

know... I pretty much only take LDN. I added B1 July 2005 that I

started taking with the LDN, it's supposed to help with the mosquito

bites... but then 14 days later I stopped using my cane that I needed

to get around for a while and haven't used it since. I'm afraid to

stop the B1 and find out that that's why I'm walking. LOL

>

> Who really know... the body knows.. so it does just exactly what it

can do.. and we all are really just clueless and have to ponder

explanations for what we see and think we know. Whatever is going on

behind the scenes from our information banks is doing exactly what

it's supposed to.

>

> Good luck to us all.

>

> btw, I never got on the road.. Ernesto had other plans.

>

>

> [low dose naltrexone] CAUTION: LDN Not effective For All

With MS

>

>

> Hello,

> I believe it's important to let all know that this may not work

for

> everyone with MS. Here's my story:

> I was originally seen by a neurologist when symptoms were

moving very

> aggressively. My local neurologist prescribed me Copaxone in

early

> 2000 before I was officially diagnosed due to probable MS from

seeing

> the MRI results. Took Copaxone for around 6 months but it did

nothing

> to stop progression. He referred me to a Harvard trained

neurologist

> who runs an MS clinic at the state university hospital. After

being

> seen here, I was finally diagnosed and hospitalized for a week

of

> agressive treatment - 5 days solumedrol followed by Cytoxan

infusion

> and official diagnosis of " agressive relapsing - remitting MS " .

This

> did put a stop to progression. Continued on Cytoxan for about 3

years

> taking monthly infusions as the dose crept up each month. Got

to a

> point where the side effects were intollerable - after

infusion, 2

> 1/2 weeks of feeling like crap and depressed followed by 1 1/2

good

> weeks, then start all over again with he next infusion. Stopped

> Cytoxan, then started Rebif, that went on for a couple years

also

> with the crappy 'flu-like symptoms' which seemed worse than

they

> should be. Neuro checked and it turned out my liver enzymes had

shot

> up to >400 when the should be around 40. Stopped Rebif just

before

> Thanksgiving of 2005.

> Now for my experience with LDN. I had originally tried it last

> year 2005 when Rebif was causing some trouble. Before starting

LDN, I

> even set up an initial and follow-up appointment with Dr.

Bihari over

> the phone which was very detailed and paid for it out of pocket

since

> insurance didn't cover for him but I thought it was worth going

to

> get expert advice. In the beginning, LDN at 4.5 or sometimes 3

mg.

> (when insomnia was an issue) worked very well. My

> energy level was superb, spirits and attitude was excellent and

it

> actually did stop a relapse that I was just starting. But

gradually

> after a few months the good effects began to wear off and the

MS

> symptoms began to return more agressive around mid day. It was

> suggested that I take DL-Phenylalinine 500 mg. 2x/day. This did

not

> work. The worse part of my symptoms was my back - spinal chord

> tingling, tightness, pain etc. which I am sure is disease

activity in

> my spine. I eventually stopped and went back on Rebif but only

for a

> short while as I mentioned earlier due to the liver enzyme

issues.

> So, for a while after giving up on Rebif and noticing symptoms

acting

> up again, I decided to give LDN one more try in February of

this

> year. As before, it stopped a relapse dead in it's tracks but

also as

> before the good effects are wearing off now after 6 straight

months

> on LDN. I'm having the same problems as before, back pain,

tingling,

> tightness which also causes my legs to get very weak where I

can

> barely walk more than a few feet without supporting myself -

and

> falling frequently. Many other functions are good - cognitive,

visual

> etc. but bowel and bladder irregularities are apparent again

due to

> MS activity in the spine. I have also been on a special diet (

> www.direct-ms.org ) to try to halt this !@#$ disease. No

gluten,

> dairy or high saturated fats etc - been on this diet for over a

year

> and it hasn't seemed to help yet though I know I am eating very

well.

> Have considered trying this Colloidal Silver treatment that

I've

> heard about which supposedly attacks the HHV-6 virus implicated

as a

> cause of MS.

> In conclusion, I have read recently that there are 4 MS disaese

> categories which may have different causes since all patients

don't

> respond similarly to the same meds - I truly believe this since

I

> have not responded well to many that I've already tried while

others

> do.

> Will be seeing my neurologist on 9/6 after I mentioned to them

the

> problems I'm having. Not sure what left to try. They want me to

try a

> med called Cellcept which is an immunosuppresant but the side

effects

> of this one scares me. I'm actually considering Tysabri again

which I

> was originally supposed to be starting last spring just before

it got

> cancelled. I know there are major risks with this but I'm so

fed up

> with nothing else seeming to work. Any other bright ideas or

> suggestions out there ? Thanks for listening.

> Sincerely,

> FED UP WITH MS

>

[Guest guest]

Thanks for the suggestions . I will look into the heavy metal

toxicity.......always wondered about my mercury/amalgam fillings and

what they could be douing.

Andre

> >

> > Hello,

> > I believe it's important to let all know that this may not work

for

> > everyone with MS. Here's my story:

> > I was originally seen by a neurologist when symptoms were moving

> very

> > aggressively. My local neurologist prescribed me Copaxone in

early

> > 2000 before I was officially diagnosed due to probable MS from

> seeing

> > the MRI results. Took Copaxone for around 6 months but it did

> nothing

> > to stop progression. He referred me to a Harvard trained

> neurologist

> > who runs an MS clinic at the state university hospital. After

being

> > seen here, I was finally diagnosed and hospitalized for a week of

> > agressive treatment - 5 days solumedrol followed by Cytoxan

> infusion

> > and official diagnosis of " agressive relapsing - remitting MS " .

> This

> > did put a stop to progression. Continued on Cytoxan for about 3

> years

> > taking monthly infusions as the dose crept up each month. Got to

a

> > point where the side effects were intollerable - after infusion,

2

> > 1/2 weeks of feeling like crap and depressed followed by 1 1/2

good

> > weeks, then start all over again with he next infusion. Stopped

> > Cytoxan, then started Rebif, that went on for a couple years also

> > with the crappy 'flu-like symptoms' which seemed worse than they

> > should be. Neuro checked and it turned out my liver enzymes had

> shot

> > up to >400 when the should be around 40. Stopped Rebif just

before

> > Thanksgiving of 2005.

> > Now for my experience with LDN. I had originally tried it

last

> > year 2005 when Rebif was causing some trouble. Before starting

LDN,

> I

> > even set up an initial and follow-up appointment with Dr. Bihari

> over

> > the phone which was very detailed and paid for it out of pocket

> since

> > insurance didn't cover for him but I thought it was worth going

to

> > get expert advice. In the beginning, LDN at 4.5 or sometimes 3

mg.

> > (when insomnia was an issue) worked very well. My

> > energy level was superb, spirits and attitude was excellent and

it

> > actually did stop a relapse that I was just starting. But

gradually

> > after a few months the good effects began to wear off and the MS

> > symptoms began to return more agressive around mid day. It was

> > suggested that I take DL-Phenylalinine 500 mg. 2x/day. This did

not

> > work. The worse part of my symptoms was my back - spinal chord

> > tingling, tightness, pain etc. which I am sure is disease

activity

> in

> > my spine. I eventually stopped and went back on Rebif but only

for

> a

> > short while as I mentioned earlier due to the liver enzyme

issues.

> > So, for a while after giving up on Rebif and noticing symptoms

> acting

> > up again, I decided to give LDN one more try in February of this

> > year. As before, it stopped a relapse dead in it's tracks but

also

> as

> > before the good effects are wearing off now after 6 straight

months

> > on LDN. I'm having the same problems as before, back pain,

> tingling,

> > tightness which also causes my legs to get very weak where I can

> > barely walk more than a few feet without supporting myself - and

> > falling frequently. Many other functions are good - cognitive,

> visual

> > etc. but bowel and bladder irregularities are apparent again due

to

> > MS activity in the spine. I have also been on a special diet (

> > www.direct-ms.org ) to try to halt this !@#$ disease. No gluten,

> > dairy or high saturated fats etc - been on this diet for over a

> year

> > and it hasn't seemed to help yet though I know I am eating very

> well.

> > Have considered trying this Colloidal Silver treatment that I've

> > heard about which supposedly attacks the HHV-6 virus implicated

as

> a

> > cause of MS.

> > In conclusion, I have read recently that there are 4 MS disaese

> > categories which may have different causes since all patients

don't

> > respond similarly to the same meds - I truly believe this since I

> > have not responded well to many that I've already tried while

> others

> > do.

> > Will be seeing my neurologist on 9/6 after I mentioned to them

the

> > problems I'm having. Not sure what left to try. They want me to

try

> a

> > med called Cellcept which is an immunosuppresant but the side

> effects

> > of this one scares me. I'm actually considering Tysabri again

which

> I

> > was originally supposed to be starting last spring just before it

> got

> > cancelled. I know there are major risks with this but I'm so fed

up

> > with nothing else seeming to work. Any other bright ideas or

> > suggestions out there ? Thanks for listening.

> > Sincerely,

> > FED UP WITH MS

> >

>

[Guest guest]

>

> Hello,

> I believe it's important to let all know that this may not work

for

> everyone with MS. Here's my story:

> I was originally seen by a neurologist when symptoms were moving

very

> aggressively. THE REST WAS TRIMMED!

>Hello Fed up

I think we can all say that we are fed up but we as a group don't

give up

So in the spirit of not giving up I still look,hope springs

eternal,etc.

My story is a little better but still it's no volumeof great tidings

as I see after three years of LDN use both my brother and myself are

still loosing ground but any of our Dr.s will not prescribe anything

else like the crab four or Tysabri cause we are P.P.M.S.(not that I

want them)so it is up to us to scope out alternative treatments.

Now my bro. can't even sit up without help so it behooves me to do

the research and lately I have been looking into a site with a

product ,which is sold under the name of " Stem Enhance " and it

claims to be the answer to a lot of our problems, as does LDN by the

way.

I am so excited by this product that I will start using it as soon

as I get my first shipment! Now I know that there will be a few

people say " Snakeoil salesman " and the like but I also read here

where people were paying thousands of dollars to get " Stemcells "

injected into their bodies and with some not so good to quite good

results plus a repeat visit is needed at a quite large price too.

All I can do is too invest what little spare money I can and give it

a try I will keep you all informed of any results but for now I

would appreciate it if you guys would let me know what you think

about it.Good bad or otherwise

I won't get my stuff till two weeks from now.but I did order a

months worth,if it works half as fast as ldn did initially I should

have results in two weeks.

Heres hopeing

Reg

[Guest guest]

This is the best I can suggestion I can think of. Call the library 608-647-6513 Tuesday morning and ask them for any back newsletters concerning alternative ms treatments. Look seriously into the calcium EAP protocol and the Klenner. I do the EAP and I am like the ever ready bunny on the commercial who goes on and on and on about it..... Seriously, you haven't tried one of the best and safest treatments until you do the injectible EAP. Kathy

[low dose naltrexone] CAUTION: LDN Not effective For All With MS

Hello,I believe it's important to let all know that this may not work for everyone with MS. Here's my story:I was originally seen by a neurologist when symptoms were moving very aggressively. My local neurologist prescribed me Copaxone in early 2000 before I was officially diagnosed due to probable MS from seeing the MRI results. Took Copaxone for around 6 months but it did nothing to stop progression. He referred me to a Harvard trained neurologist who runs an MS clinic at the state university hospital. After being seen here, I was finally diagnosed and hospitalized for a week of agressive treatment - 5 days solumedrol followed by Cytoxan infusion and official diagnosis of "agressive relapsing - remitting MS". This did put a stop to progression. Continued on Cytoxan for about 3 years taking monthly infusions as the dose crept up each month. Got to a point where the side effects were intollerable - after infusion, 2 1/2 weeks of feeling like crap and depressed followed by 1 1/2 good weeks, then start all over again with he next infusion. Stopped Cytoxan, then started Rebif, that went on for a couple years also with the crappy 'flu-like symptoms' which seemed worse than they should be. Neuro checked and it turned out my liver enzymes had shot up to >400 when the should be around 40. Stopped Rebif just before Thanksgiving of 2005.Now for my experience with LDN. I had originally tried it last year 2005 when Rebif was causing some trouble. Before starting LDN, I even set up an initial and follow-up appointment with Dr. Bihari over the phone which was very detailed and paid for it out of pocket since insurance didn't cover for him but I thought it was worth going to get expert advice. In the beginning, LDN at 4.5 or sometimes 3 mg. (when insomnia was an issue) worked very well. My energy level was superb, spirits and attitude was excellent and it actually did stop a relapse that I was just starting. But gradually after a few months the good effects began to wear off and the MS symptoms began to return more agressive around mid day. It was suggested that I take DL-Phenylalinine 500 mg. 2x/day. This did not work. The worse part of my symptoms was my back - spinal chord tingling, tightness, pain etc. which I am sure is disease activity in my spine. I eventually stopped and went back on Rebif but only for a short while as I mentioned earlier due to the liver enzyme issues. So, for a while after giving up on Rebif and noticing symptoms acting up again, I decided to give LDN one more try in February of this year. As before, it stopped a relapse dead in it's tracks but also as before the good effects are wearing off now after 6 straight months on LDN. I'm having the same problems as before, back pain, tingling, tightness which also causes my legs to get very weak where I can barely walk more than a few feet without supporting myself - and falling frequently. Many other functions are good - cognitive, visual etc. but bowel and bladder irregularities are apparent again due to MS activity in the spine. I have also been on a special diet ( www.direct-ms.org ) to try to halt this !@#$ disease. No gluten, dairy or high saturated fats etc - been on this diet for over a year and it hasn't seemed to help yet though I know I am eating very well. Have considered trying this Colloidal Silver treatment that I've heard about which supposedly attacks the HHV-6 virus implicated as a cause of MS. In conclusion, I have read recently that there are 4 MS disaese categories which may have different causes since all patients don't respond similarly to the same meds - I truly believe this since I have not responded well to many that I've already tried while others do. Will be seeing my neurologist on 9/6 after I mentioned to them the problems I'm having. Not sure what left to try. They want me to try a med called Cellcept which is an immunosuppresant but the side effects of this one scares me. I'm actually considering Tysabri again which I was originally supposed to be starting last spring just before it got cancelled. I know there are major risks with this but I'm so fed up with nothing else seeming to work. Any other bright ideas or suggestions out there ? Thanks for listening.Sincerely,FED UP WITH MS

[Guest guest]

Hello Reg,

Thanks for the info and ideas on more alternative treatments. I've

learned so much from all your replies to my post. Going to see my

neuro tomorrow. For him, unless it's gone through 10 years of double

blind placebo controlled studies won't go most of your suggestions

including LDN. The problem for some of us though is that we can't

wait that long because the MS train is moving too fast. Reg, I wish

the best and hope you and your brother succeed with your new med. Do

keep us informed.

Andre

> >

> > Hello,

> > I believe it's important to let all know that this may not work

> for

> > everyone with MS. Here's my story:

> > I was originally seen by a neurologist when symptoms were moving

> very

> > aggressively. THE REST WAS TRIMMED!

>

> >Hello Fed up

> I think we can all say that we are fed up but we as a group don't

> give up

> So in the spirit of not giving up I still look,hope springs

> eternal,etc.

> My story is a little better but still it's no volumeof great

tidings

> as I see after three years of LDN use both my brother and myself

are

> still loosing ground but any of our Dr.s will not prescribe

anything

> else like the crab four or Tysabri cause we are P.P.M.S.(not that I

> want them)so it is up to us to scope out alternative treatments.

> Now my bro. can't even sit up without help so it behooves me to do

> the research and lately I have been looking into a site with a

> product ,which is sold under the name of " Stem Enhance " and it

> claims to be the answer to a lot of our problems, as does LDN by

the

> way.

> I am so excited by this product that I will start using it as soon

> as I get my first shipment! Now I know that there will be a few

> people say " Snakeoil salesman " and the like but I also read here

> where people were paying thousands of dollars to get " Stemcells "

> injected into their bodies and with some not so good to quite good

> results plus a repeat visit is needed at a quite large price too.

> All I can do is too invest what little spare money I can and give

it

> a try I will keep you all informed of any results but for now I

> would appreciate it if you guys would let me know what you think

> about it.Good bad or otherwise

> I won't get my stuff till two weeks from now.but I did order a

> months worth,if it works half as fast as ldn did initially I should

> have results in two weeks.

> Heres hopeing

> Reg

>

[Guest guest]

Hello Reg,

Thanks for the info and ideas on more alternative treatments. I've

learned so much from all your replies to my post. Going to see my

neuro tomorrow. For him, unless it's gone through 10 years of double

blind placebo controlled studies won't go most of your suggestions

including LDN. The problem for some of us though is that we can't

wait that long because the MS train is moving too fast. Reg, I wish

the best and hope you and your brother succeed with your new med. Do

keep us informed.

Andre

> >

> > Hello,

> > I believe it's important to let all know that this may not work

> for

> > everyone with MS. Here's my story:

> > I was originally seen by a neurologist when symptoms were moving

> very

> > aggressively. THE REST WAS TRIMMED!

>

> >Hello Fed up

> I think we can all say that we are fed up but we as a group don't

> give up

> So in the spirit of not giving up I still look,hope springs

> eternal,etc.

> My story is a little better but still it's no volumeof great

tidings

> as I see after three years of LDN use both my brother and myself

are

> still loosing ground but any of our Dr.s will not prescribe

anything

> else like the crab four or Tysabri cause we are P.P.M.S.(not that I

> want them)so it is up to us to scope out alternative treatments.

> Now my bro. can't even sit up without help so it behooves me to do

> the research and lately I have been looking into a site with a

> product ,which is sold under the name of " Stem Enhance " and it

> claims to be the answer to a lot of our problems, as does LDN by

the

> way.

> I am so excited by this product that I will start using it as soon

> as I get my first shipment! Now I know that there will be a few

> people say " Snakeoil salesman " and the like but I also read here

> where people were paying thousands of dollars to get " Stemcells "

> injected into their bodies and with some not so good to quite good

> results plus a repeat visit is needed at a quite large price too.

> All I can do is too invest what little spare money I can and give

it

> a try I will keep you all informed of any results but for now I

> would appreciate it if you guys would let me know what you think

> about it.Good bad or otherwise

> I won't get my stuff till two weeks from now.but I did order a

> months worth,if it works half as fast as ldn did initially I should

> have results in two weeks.

> Heres hopeing

> Reg

>