Re: using ldn for ALS--great news!

[Guest guest]

Hi , That is FANTASTIC news! Each improvement as well as lack of disease progression is indeed significant. It truly is very encouraging and I am so very happy for you. Gigi <bbddcat@...> wrote: I am in my ninth week of taking ldn. I was diagnosed with motor neuron disease/ALS in November of '04. I have felt that my ALS hasn't progressed since starting the ldn, and over the last week or so I was noticing some increased tone in my muscles...something that hasn't happened since almost a year prior to my diagnosis.Yesterday, I went ahead and measured my thigh muscles. In the last two months, I have actually gained a 1/4 inch in circumference of my left thigh, and 1/2 inch in the circumference of my right

thigh. I realize these could be incendental findings, but I did measure at the same time during my menses cycle, and have had no dietary changes so I doubt there is any chance of fluid retention affecting the results. This is the only time that there has not been muscle loss, let alone gain, since my diagnosis.Since I started the ldn, I have been doing a light stretching/yoga tape six days a week, and trying to ride a stationary bike three minutes per day. However, prior to the ldn I was unable to do these things.I honestly believe that the combination of ldn and exercising is perhaps arresting or even slightly turning back the course of my disease! I would strongly encourage anyone with ALS to try the ldn...I am not aware of anyone else who has actually stopped progressing in this manner!I was also thinking about all of you who have MS. Because it generally is not a steady

course like ALS, to me this is a good indicator that the ldn works! We have been tracking my muscle wasting by measurements as well as other means since diagnosis. In some ways, I am fortunate to have a disease that can actually be quantifiably measured in it's progression. So if it's causing visible results with ALS, I would think it is doing something very similar with MS!Thanks for allowing me to share my good news!Take Care,

Bring photos to life! New PhotoMail makes sharing a breeze.

[Guest guest]

Thank you so much, Gigi!

Take care!

> I am in my ninth week of taking ldn. I was diagnosed with motor

> neuron disease/ALS in November of '04.

>

> I have felt that my ALS hasn't progressed since starting the ldn,

> and over the last week or so I was noticing some increased tone in

> my muscles...something that hasn't happened since almost a year

> prior to my diagnosis.

>

> Yesterday, I went ahead and measured my thigh muscles. In the

last

> two months, I have actually gained a 1/4 inch in circumference of

my

> left thigh, and 1/2 inch in the circumference of my right thigh.

I

> realize these could be incendental findings, but I did measure at

> the same time during my menses cycle, and have had no dietary

> changes so I doubt there is any chance of fluid retention

affecting

> the results. This is the only time that there has not been muscle

> loss, let alone gain, since my diagnosis.

>

> Since I started the ldn, I have been doing a light stretching/yoga

> tape six days a week, and trying to ride a stationary bike three

> minutes per day. However, prior to the ldn I was unable to do

these

> things.

>

> I honestly believe that the combination of ldn and exercising is

> perhaps arresting or even slightly turning back the course of my

> disease! I would strongly encourage anyone with ALS to try the

> ldn...I am not aware of anyone else who has actually stopped

> progressing in this manner!

>

> I was also thinking about all of you who have MS. Because it

> generally is not a steady course like ALS, to me this is a good

> indicator that the ldn works! We have been tracking my muscle

> wasting by measurements as well as other means since diagnosis.

In

> some ways, I am fortunate to have a disease that can actually be

> quantifiably measured in it's progression. So if it's causing

> visible results with ALS, I would think it is doing something very

> similar with MS!

>

> Thanks for allowing me to share my good news!

>

> Take Care,

>

>

>

[Guest guest]

>

> I am in my ninth week of taking ldn. I was diagnosed with motor

> neuron disease/ALS in November of '04.

>

> I have felt that my ALS hasn't progressed since starting the ldn,

> and over the last week or so I was noticing some increased tone in

> my muscles...something that hasn't happened since almost a year

> prior to my diagnosis.

>

> Yesterday, I went ahead and measured my thigh muscles. In the last

> two months, I have actually gained a 1/4 inch in circumference of my

> left thigh, and 1/2 inch in the circumference of my right thigh. I

> realize these could be incendental findings, but I did measure at

> the same time during my menses cycle, and have had no dietary

> changes so I doubt there is any chance of fluid retention affecting

> the results. This is the only time that there has not been muscle

> loss, let alone gain, since my diagnosis.

>

> Since I started the ldn, I have been doing a light stretching/yoga

> tape six days a week, and trying to ride a stationary bike three

> minutes per day. However, prior to the ldn I was unable to do these

> things.

>

> I honestly believe that the combination of ldn and exercising is

> perhaps arresting or even slightly turning back the course of my

> disease! I would strongly encourage anyone with ALS to try the

> ldn...I am not aware of anyone else who has actually stopped

> progressing in this manner!

>

> I was also thinking about all of you who have MS. Because it

> generally is not a steady course like ALS, to me this is a good

> indicator that the ldn works! We have been tracking my muscle

> wasting by measurements as well as other means since diagnosis. In

> some ways, I am fortunate to have a disease that can actually be

> quantifiably measured in it's progression. So if it's causing

> visible results with ALS, I would think it is doing something very

> similar with MS!

>

> Thanks for allowing me to share my good news!

>

> Take Care,

>

>

>

========

,

Keep us posted and when you see your doc again let us know what he/she says.

Did your doc willingly write you a script? Are you from the US or other

country? I wish you the best on LDN and who knows you may be the first ALS

survivor. Are you using any other meds? Are you taking 3.0mg or 4.5mg LDN?

[Guest guest]

, Wow!! So glad to hear of your results. My mother told me last week of a neighbor of her long-time-friend who has had ALS since the '70's. My mother was a nurse before she retired and knew this was not common and shared it with me to give me hope for my MS. Sincerely, Annette

[Guest guest]

Fantastic news !! :-)

I know of several others having good success with LDN for ALS and have

put their stories (in brief) on the low dose naltrexone site. If

Gluck hasn't contacted you yet no doubt he will do so soon so you can do

the same.

wrote:

> I am in my ninth week of taking ldn. I was diagnosed with motor

> neuron disease/ALS in November of '04.

>

> I have felt that my ALS hasn't progressed since starting the ldn,

> and over the last week or so I was noticing some increased tone in

> my muscles...something that hasn't happened since almost a year

> prior to my diagnosis.

[Guest guest]

Hi , looks like good news! Of the many people who post here,

yours should be one of the most revealing on the effectivness of LDN.

From what I know of ALS, it is a fast and relentless disease. If LDN

has stopped your ALS from progressing, it is indeed a good indicator

that LDN works. Did your doctor tell you what you could expect when

you were diagnosed with ALS and does he/she know you take LDN?

Sincerely,

>

> I am in my ninth week of taking ldn. I was diagnosed with motor

> neuron disease/ALS in November of '04.

>

> I have felt that my ALS hasn't progressed since starting the ldn,

> and over the last week or so I was noticing some increased tone in

> my muscles...something that hasn't happened since almost a year

> prior to my diagnosis.

>

> Yesterday, I went ahead and measured my thigh muscles. In the last

> two months, I have actually gained a 1/4 inch in circumference of my

> left thigh, and 1/2 inch in the circumference of my right thigh. I

> realize these could be incendental findings, but I did measure at

> the same time during my menses cycle, and have had no dietary

> changes so I doubt there is any chance of fluid retention affecting

> the results. This is the only time that there has not been muscle

> loss, let alone gain, since my diagnosis.

>

> Since I started the ldn, I have been doing a light stretching/yoga

> tape six days a week, and trying to ride a stationary bike three

> minutes per day. However, prior to the ldn I was unable to do these

> things.

>

> I honestly believe that the combination of ldn and exercising is

> perhaps arresting or even slightly turning back the course of my

> disease! I would strongly encourage anyone with ALS to try the

> ldn...I am not aware of anyone else who has actually stopped

> progressing in this manner!

>

> I was also thinking about all of you who have MS. Because it

> generally is not a steady course like ALS, to me this is a good

> indicator that the ldn works! We have been tracking my muscle

> wasting by measurements as well as other means since diagnosis. In

> some ways, I am fortunate to have a disease that can actually be

> quantifiably measured in it's progression. So if it's causing

> visible results with ALS, I would think it is doing something very

> similar with MS!

>

> Thanks for allowing me to share my good news!

>

> Take Care,

>

>

>

[Guest guest]

,

I apologize for the delay in answering you. I live in Indiana. I

asked my neurologist about ldn, and he was very willing to give it a

try, as he had prescribed it for MS previously and we were at the

end of the road as far as what we could do for me. We started with

3.0, which he does not want to increase until after he sees me this

month. I am also on Provigil, Neurontin, Xanax XR, Wellbutrin, and

Baclofen as needed. Actually, I rarely need to take the Baclofen

anymore.

I certainly will post after I have my appointment. I am anxious to

see what he says regarding my progress!

Take Care,

Cath

--- In low dose naltrexone , " Bren " <b63powell@...>

wrote:

>

>

> --- In low dose naltrexone , " " <bbddcat@>

wrote:

> >

> > I am in my ninth week of taking ldn. I was diagnosed with motor

> > neuron disease/ALS in November of '04.

> >

> > I have felt that my ALS hasn't progressed since starting the

ldn,

> > and over the last week or so I was noticing some increased tone

in

> > my muscles...something that hasn't happened since almost a year

> > prior to my diagnosis.

> >

> > Yesterday, I went ahead and measured my thigh muscles. In the

last

> > two months, I have actually gained a 1/4 inch in circumference

of my

> > left thigh, and 1/2 inch in the circumference of my right

thigh. I

> > realize these could be incendental findings, but I did measure

at

> > the same time during my menses cycle, and have had no dietary

> > changes so I doubt there is any chance of fluid retention

affecting

> > the results. This is the only time that there has not been

muscle

> > loss, let alone gain, since my diagnosis.

> >

> > Since I started the ldn, I have been doing a light

stretching/yoga

> > tape six days a week, and trying to ride a stationary bike three

> > minutes per day. However, prior to the ldn I was unable to do

these

> > things.

> >

> > I honestly believe that the combination of ldn and exercising is

> > perhaps arresting or even slightly turning back the course of my

> > disease! I would strongly encourage anyone with ALS to try the

> > ldn...I am not aware of anyone else who has actually stopped

> > progressing in this manner!

> >

> > I was also thinking about all of you who have MS. Because it

> > generally is not a steady course like ALS, to me this is a good

> > indicator that the ldn works! We have been tracking my muscle

> > wasting by measurements as well as other means since diagnosis.

In

> > some ways, I am fortunate to have a disease that can actually be

> > quantifiably measured in it's progression. So if it's causing

> > visible results with ALS, I would think it is doing something

very

> > similar with MS!

> >

> > Thanks for allowing me to share my good news!

> >

> > Take Care,

> >

> >

> >

> ========

>

> ,

>

> Keep us posted and when you see your doc again let us know what

he/she says. Did your doc willingly write you a script? Are you

from the US or other country? I wish you the best on LDN and who

knows you may be the first ALS survivor. Are you using any other

meds? Are you taking 3.0mg or 4.5mg LDN?

>

>

>

[Guest guest]

Thank you for sharing that with me, Annette! It always helps for me

to hear of others who have made it so long. And thank you for the

congratulations!

Take Care,

>

> , Wow!! So glad to hear of your results. My mother

told me last

> week of a neighbor of her long-time-friend who has had ALS since

the '70's.

> My mother was a nurse before she retired and knew this was not

common and

> shared it with me to give me hope for my

MS.

> Sincerely, Annette

>

[Guest guest]

Thank you, ! It is exciting news! Yes, I have heard from Dr.

Gluck and will keep him updated as to my progress as well.

Take Care!

>

> Fantastic news !! :-)

>

> I know of several others having good success with LDN for ALS and

have

> put their stories (in brief) on the low dose naltrexone site. If

> Gluck hasn't contacted you yet no doubt he will do so soon so you

can do

> the same.

>

>

>

[Guest guest]

Thank you, !

Actually, the neurologist I was diagnosed by said that it would be

impossible to guess how quickly it would progress. (Actually he

said, " Some people look horrible on paper yet have a slower

progression, some people look great on paper and are dead in two

weeks. " ) So obviously, I do not see him anymore...LOL.

However, my current neuro told me that each ALS patient progresses

at different rates but that it is a continuous progression that will

not cease, and that I could anticipate an approximate three to five

year course. He was very willing to try the ldn for ALS as we were

stuck regarding further medical options. So this is great news for

me!

Take Care,

>

> Hi , looks like good news! Of the many people who post

here,

> yours should be one of the most revealing on the effectivness of

LDN.

> From what I know of ALS, it is a fast and relentless disease. If

LDN

> has stopped your ALS from progressing, it is indeed a good

indicator

> that LDN works. Did your doctor tell you what you could expect when

> you were diagnosed with ALS and does he/she know you take LDN?

> Sincerely,

[Guest guest]

Hi Cath,

What are you using the Xanax XR and Wellbutrin for. My husband was on Xanax

and Wellbutrin but he got off because the 2 enzymes in DLP took care of his

depression and gave him more energy. I don't know if it is recommended for

ALS but it is recommended for MS from Dr. Bihari. But if someone has high

blood pressure it is not recommended and there are a couple of forms of

cancer that it is not recommended for.

Take care

Aletha

[low dose naltrexone] Re: using ldn for ALS--great news!

> ,

>

> I apologize for the delay in answering you. I live in Indiana. I

> asked my neurologist about ldn, and he was very willing to give it a

> try, as he had prescribed it for MS previously and we were at the

> end of the road as far as what we could do for me. We started with

> 3.0, which he does not want to increase until after he sees me this

> month. I am also on Provigil, Neurontin, Xanax XR, Wellbutrin, and

> Baclofen as needed. Actually, I rarely need to take the Baclofen

> anymore.

>

> I certainly will post after I have my appointment. I am anxious to

> see what he says regarding my progress!

>

> Take Care,

>

> Cath

>

>

>> >

>> > I am in my ninth week of taking ldn. I was diagnosed with motor

>> > neuron disease/ALS in November of '04.

>> >

>> > I have felt that my ALS hasn't progressed since starting the

> ldn,

>> > and over the last week or so I was noticing some increased tone

> in

>> > my muscles...something that hasn't happened since almost a year

>> > prior to my diagnosis.

>> >

>> > Yesterday, I went ahead and measured my thigh muscles. In the

> last

>> > two months, I have actually gained a 1/4 inch in circumference

> of my

>> > left thigh, and 1/2 inch in the circumference of my right

> thigh. I

>> > realize these could be incendental findings, but I did measure

> at

>> > the same time during my menses cycle, and have had no dietary

>> > changes so I doubt there is any chance of fluid retention

> affecting

>> > the results. This is the only time that there has not been

> muscle

>> > loss, let alone gain, since my diagnosis.

>> >

>> > Since I started the ldn, I have been doing a light

> stretching/yoga

>> > tape six days a week, and trying to ride a stationary bike three

>> > minutes per day. However, prior to the ldn I was unable to do

> these

>> > things.

>> >

>> > I honestly believe that the combination of ldn and exercising is

>> > perhaps arresting or even slightly turning back the course of my

>> > disease! I would strongly encourage anyone with ALS to try the

>> > ldn...I am not aware of anyone else who has actually stopped

>> > progressing in this manner!

>> >

>> > I was also thinking about all of you who have MS. Because it

>> > generally is not a steady course like ALS, to me this is a good

>> > indicator that the ldn works! We have been tracking my muscle

>> > wasting by measurements as well as other means since diagnosis.

> In

>> > some ways, I am fortunate to have a disease that can actually be

>> > quantifiably measured in it's progression. So if it's causing

>> > visible results with ALS, I would think it is doing something

> very

>> > similar with MS!

>> >

>> > Thanks for allowing me to share my good news!

>> >

>> > Take Care,

>> >

>> >

>> >

>> ========

>>

>> ,

>>

>> Keep us posted and when you see your doc again let us know what

> he/she says. Did your doc willingly write you a script? Are you

> from the US or other country? I wish you the best on LDN and who

> knows you may be the first ALS survivor. Are you using any other

> meds? Are you taking 3.0mg or 4.5mg LDN?

>>

>>

>>

>

>

>

>

>

>

>

>

>

[Guest guest]

Aletha and all

DLP is the amino acid called dl-Phenylalanine. I do not respond well to it but am OK with it's kissing cousin, the amino acid l-Tyrosine.

mjh

From: "Aletha Wittmann" <Aletha@...>Subject: Re: Re: using ldn for ALS--great news!Hi Cath,What are you using the Xanax XR and Wellbutrin for. My husband was on Xanax and Wellbutrin but he got off because the 2 enzymes in DLP took care of his depression and gave him more energy. I don't know if it is recommended for ALS but it is recommended for MS from Dr. Bihari. But if someone has high blood pressure it is not recommended and there are a couple of forms of cancer that it is not recommended for.Take careAletha----- Original

[Guest guest]

>

> ,

>

> I apologize for the delay in answering you. I live in Indiana. I

> asked my neurologist about ldn, and he was very willing to give it a

> try, as he had prescribed it for MS previously and we were at the

> end of the road as far as what we could do for me. We started with

> 3.0, which he does not want to increase until after he sees me this

> month. I am also on Provigil, Neurontin, Xanax XR, Wellbutrin, and

> Baclofen as needed. Actually, I rarely need to take the Baclofen

> anymore.

>

> I certainly will post after I have my appointment. I am anxious to

> see what he says regarding my progress!

>

> Take Care,

>

> Cath

----------

I sure hope he puts you on 4.5mg soon, I know that's the dose Dr. Bihari prefers

most to be taking.

[Guest guest]

,

Since you are trying to help yourself to the max I suggest you do the candida

spit test listed on my site and see if you have candida and see further down in

that thread on ways to help get rid of the candida.

Ignore the google ads.

Low Dose Naltrexone Forum - Check yourself for Candida(yeast overgrowth)...

http://ldn.proboards3.com/index.cgi?board=forum & action=display & thread=1129136093

I'm also saving your updates to my forum and any updates you post I will copy

and make your posts into diary format.

[Guest guest]

I saw a website where a woman has had ALS for umpteen(somewhere in the teens anyway) years......much longer than 3-5.I jsut wanted you to know this.Since my neuro has NO T ruled out ALS as a possiblilty for me , I am very interested in this topic!!!

Nola

[low dose naltrexone] Re: using ldn for ALS--great news!

Thank you, !Actually, the neurologist I was diagnosed by said that it would be impossible to guess how quickly it would progress. (Actually he said, "Some people look horrible on paper yet have a slower progression, some people look great on paper and are dead in two weeks.") So obviously, I do not see him anymore...LOL. However, my current neuro told me that each ALS patient progresses at different rates but that it is a continuous progression that will not cease, and that I could anticipate an approximate three to five year course. He was very willing to try the ldn for ALS as we were stuck regarding further medical options. So this is great news for me!Take Care,>> Hi , looks like good news! Of the many people who post here,> yours should be one of the most revealing on the effectivness of LDN.> From what I know of ALS, it is a fast and relentless disease. If LDN> has stopped your ALS from progressing, it is indeed a good indicator> that LDN works. Did your doctor tell you what you could expect when> you were diagnosed with ALS and does he/she know you take LDN? > Sincerely,

[Guest guest]

Aletha,

I take the Xanax XR because it seems to prevent some of the spasms

that I was getting. It seems to work better as a preventative than

taking a regular Xanax when the spasms start. The Wellbutrin is for

the depression that set in at the time of diagnosis. I am glad your

husband is getting good results with the DLP!

Take Care,

>

> Hi Cath,

>

> What are you using the Xanax XR and Wellbutrin for. My husband

was on Xanax

> and Wellbutrin but he got off because the 2 enzymes in DLP took

care of his

> depression and gave him more energy. I don't know if it is

recommended for

> ALS but it is recommended for MS from Dr. Bihari. But if someone

has high

> blood pressure it is not recommended and there are a couple of

forms of

> cancer that it is not recommended for.

>

> Take care

> Aletha

[Guest guest]

,

The original intent was to move me to 4.5 mg. after three months at

3.0. Because my doctor had not prescribed ldn for ALS previously,

he wanted to be cautious and see what sorts of changes, if any, were

noted. We did have some concern that increased spasticity might be

a problem at a higher dose, so we wanted to give the 3.0 a fair

trial first, so should I have problems, we can be comfortable

dropping back to 3.0.

Take Care,

--- In low dose naltrexone , " Bren " <b63powell@...>

wrote:

>

>

> I sure hope he puts you on 4.5mg soon, I know that's the dose Dr.

Bihari prefers most to be taking.

>

>

>

[Guest guest]

,

First off, thank you for suggesting the candida spit test. I have

done it twice now, and both times it indicated no candida.

Thank you for saving my updates to the forum...I really hope my

experience can help people diagnosed with ALS and other motor neuron

diseases.

Take Care!

--- In low dose naltrexone , " Bren " <b63powell@...>

wrote:

>

>

> ,

>

> Since you are trying to help yourself to the max I suggest you do

the candida spit test listed on my site and see if you have candida

and see further down in that thread on ways to help get rid of the

candida.

>

> Ignore the google ads.

> Low Dose Naltrexone Forum - Check yourself for Candida(yeast

overgrowth)...

> http://ldn.proboards3.com/index.cgi?

board=forum & action=display & thread=1129136093

>

> I'm also saving your updates to my forum and any updates you post

I will copy and make your posts into diary format.

>

>

>

[Guest guest]

,

I will be sure to give the web information you mentioned to my neuro

at my next visit. He has been very encouraged with ldn, and in fact

will not prescribe the crab drugs for MS patients. Pretty

impressive for an older doctor, I thought.

Take Care,

>

> Hi , you're fortunate you have a neuro who is willing to

> prescribe LDN, mine won't hear of it. If enough doctors give LDN a

try

> maybe they will be able to determine how effective LDN is. They

are on

> the front line and if they see improvements in their patients, the

> word should get out to that community. Your doctor might be

interested

> in the paper below. Hope things continue to go well for you.

> http://jpet.aspetjournals.org/cgi/content/full/293/2/607

>

[Guest guest]

Thank you for the encouraging news, Nola! I always appreciate hearing

these sorts of things. I do hope your diagnosis is not ALS, and good

luck. Let me know what diagnosis you do get...I'm very interested!

Take Care,

--- In low dose naltrexone , " oothappam " <oothappam@...>

wrote:

>

> I saw a website where a woman has had ALS for umpteen

(somewhere in the teens anyway) years......much longer than 3-5.I jsut

wanted you to know this.Since my neuro has NO T ruled out ALS as a

possiblilty for me , I am very interested in this topic!!!

> Nola

[Guest guest]

My mother told me of a nurse she used to work with whose neighbor has had ALS for over 20 years, still walking, etc. I asked her if she was sure it was ALS, and since she's been a nurse herself for 27 years she said, "OF COURSE." She's worked in ICU most of her career, my mom that is. Annette

[Guest guest]

Thanks for the encouraging news, Annette! I know there are a few of

us out there...it's always good to hear about them!

Take Care,

>

> My mother told me of a nurse she used to work with whose neighbor

has had ALS

> for over 20 years, still walking, etc. I asked her if she was sure

it was

> ALS, and since she's been a nurse herself for 27 years she said, " OF

COURSE. "

> She's worked in ICU most of her career, my mom that is. Annette

>

[Guest guest]

Hi Annette,

Not wanting to burst anyone's balloon but having had a motor neurone

disease myself for probably 15 years (not specifically ALS) I have had a

lot to do with others with ALS and everything about it - the general

consensus is that anyone like that almost certainly doesn't have ALS.

That is not intending to question your mother's belief but the fact is

that there is still no specific test for ALS and certainly wasn't 20

years ago. All they can do is eliminate diseases with similar symptoms

that do have specific tests and by that process of elimination and using

diagnostic tools like EMGs they can say " most likely you have ALS " . (I

doubt very much that they add that they can do a post mortem if you

want, because that is the only way to know for sure.)

Given that typical ALS patients succumb within 3 to 5 years on average,

the probabilities are that this woman has something similar to ALS but

not true ALS. I even read a year or two ago that the most famous ALS

person in the world, very long time survivor Hawking, does not

really have ALS. That was supposedly from a neurologist who has

examined him - just wish I could find it again.

annette464@... wrote:

> My mother told me of a nurse she used to work with whose neighbor has

> had ALS for over 20 years, still walking, etc. I asked her if she was

> sure it was ALS, and since she's been a nurse herself for 27 years she

> said, " OF COURSE. " She's worked in ICU most of her career, my mom

> that is. Annette