Re: Using Tysabri

[Guest guest]

Hi,

Sorry I'm getting in so late on this thread, just been so busy with

wildlife issues. I do wildlife rescue and care and its baby bird

season in Australia.

I have had MS for well over 30 years now and have never taken any of

the the so called disease modifying drugs.

I did a lot of research for many years and simply figured that the

odds of MAYBE being 1 of the 30% and getting a 33% improvement was

not good enough considering the nasty side affects of those drugs.

Then Tysabri came on the market, withdrawn from the market then back

on the market told me that this drug was also not good enough.

I came across LDN about 3 or 4 years ago but had problems getting a

doctor to allow me to try it.

Through this group I finally found a great doc who let me try LDN.

I started on 1.5mg then went to 3mg where I still am, I will go to

4.5mg soon. Its been about 10 months since starting LDN and its the

best thing I have done.

On 1.5mg I did get minor sleep disturbances and again when I upped to

3mg.

On 3mg i also did get an increase in spacticity and muscle spasms

which eventually abated. Thats why I have stayed on 3mg.

Dr Bihari who started all this LDN stuff always said if spacticity

and muscle spasms were an issue for MS people to stay on 3mg.

I have decided to try the 4.5 because that is the best dose if you

can tolerate it.

Some people have taken 3 or 4 attempts to get to 4.5mg.

LDN is not a magic drug that is going to cure your MS, 1 day maybe

there will be a cure BUT you will see improvements.

My bladder and bowel issues have improved greatly, much less fatigue

and far more energy.I have not had any blurred vision in 10 months.

My family are amazed at just how much I can now do.

I still have to be careful, example if I have a very late night with

little sleep I do feel it the next day and need to have an easier day.

Today is going to be very hectic, a lot of driving and it will be go

go go all day but I will be able to do it, tomorrow I will have to

make sure its an easy day.

You have nothing to lose by trying LDN but give it a fair chance,

some people have taken almost a year before they see the real

benefits. Its 10 months for me now and I will happily continue to

take my pill every night.

You can always go back to Tysabri if you want but I would be

surprised if you did.

Good Luck

Sal

>

> I started LDN one week after my last Tysabri injection. I saw

almost

> immediate bladder help as well as clearer thinking. About the time

for my

> next Tysabri (which I did not take) I definitely saw improvement in

my

> general MS symptoms (I have had MS for about 20 years). The last

few weeks

> I believe I am seeing the " it will get worse before it gets

better " . I'm

> 6-7 weeks into LDN, and have no reason to stop it. The risks

(none) of it

> over any other MS drug make it the only intelligent choice in my

mind.

> Nothing I've read or heard has done anything but strengthen my

resolve. I

> may not get any better, but also not any worse. That's plenty good

for me.

>

> DBoss

>

[Guest guest]

Hi,

are there any people out there who tried this LDN with Parkinson disease?

THanks in advance for your time.

On Wed, Oct 1, 2008 at 5:28 PM, angelauztaz <angelauztaz@...> wrote:

Hi,Sorry I'm getting in so late on this thread, just been so busy with wildlife issues. I do wildlife rescue and care and its baby bird season in Australia.I have had MS for well over 30 years now and have never taken any of

the the so called disease modifying drugs.I did a lot of research for many years and simply figured that the odds of MAYBE being 1 of the 30% and getting a 33% improvement was not good enough considering the nasty side affects of those drugs.

Then Tysabri came on the market, withdrawn from the market then back on the market told me that this drug was also not good enough.I came across LDN about 3 or 4 years ago but had problems getting a doctor to allow me to try it.

Through this group I finally found a great doc who let me try LDN.I started on 1.5mg then went to 3mg where I still am, I will go to 4.5mg soon. Its been about 10 months since starting LDN and its the best thing I have done.

On 1.5mg I did get minor sleep disturbances and again when I upped to 3mg.On 3mg i also did get an increase in spacticity and muscle spasms which eventually abated. Thats why I have stayed on 3mg.Dr Bihari who started all this LDN stuff always said if spacticity

and muscle spasms were an issue for MS people to stay on 3mg.I have decided to try the 4.5 because that is the best dose if you can tolerate it.Some people have taken 3 or 4 attempts to get to 4.5mg.LDN is not a magic drug that is going to cure your MS, 1 day maybe

there will be a cure BUT you will see improvements.My bladder and bowel issues have improved greatly, much less fatigue and far more energy.I have not had any blurred vision in 10 months.My family are amazed at just how much I can now do.

I still have to be careful, example if I have a very late night with little sleep I do feel it the next day and need to have an easier day.Today is going to be very hectic, a lot of driving and it will be go go go all day but I will be able to do it, tomorrow I will have to

make sure its an easy day.You have nothing to lose by trying LDN but give it a fair chance, some people have taken almost a year before they see the real benefits. Its 10 months for me now and I will happily continue to

take my pill every night.You can always go back to Tysabri if you want but I would be surprised if you did.Good LuckSal>> I started LDN one week after my last Tysabri injection. I saw almost> immediate bladder help as well as clearer thinking. About the time for my> next Tysabri (which I did not take) I definitely saw improvement in

my> general MS symptoms (I have had MS for about 20 years). The last few weeks> I believe I am seeing the " it will get worse before it gets better " . I'm> 6-7 weeks into LDN, and have no reason to stop it. The risks

(none) of it> over any other MS drug make it the only intelligent choice in my mind.> Nothing I've read or heard has done anything but strengthen my resolve. I> may not get any better, but also not any worse. That's plenty good

for me.> > DBoss>

[Guest guest]

Sal,

Now that was the kind of information I was hoping to get. Thanks so much for being so candid on the subject of starting LDN.

Initially when I found out about LDN I was most interested in a combination therapy with a Tysabri and LDN treatment but it seems most patients using it seem to be on a stand alone LDN treatment. Mostly because one suppresses MS thereby helping to slow the advancement of MS and one boosts the immune system with the increased endorphin level in your system. So it wouldn't make much sense using them together.

In all that I've learned about LDN it's first and foremost an endorphin booster Endorphins make you "feel good" and it seems to me when people feel good in their head and thoughts things seem to go much better in dealing with their disease. It's clear a positive attitude seems to generally create more improvements with their disease complications (mobility, pain, numbness, cognitive functions). That said, I think "feeling good" can create miracles for people who are suffering each day. LDN being such a low dosage med doesn't seem to present any danger. My Neuro doc is very skeptical since no hard clinical data is available in support of this drug.

Truthfully my MS seems completely manageable. Luckily I'm a very positive person in dealing with my disease. In this way denial seems a helpful combative tool. As far using Tysabri it doesn't make me feel better the important feature is it doesn't make you worse. It slows the progression path and is the only MS med that crosses the blood brain barrier so it's much more direct in slowing down any new damage as a result of MS. So I'm not necessarily "doing better" and I have a hard time evaluating the benefit other than not having to pock myself with a shot of Rebif 3x per week. I like only having to deal with treatments once a month. And it's great not having to plan my shot activity based on what I'm doing like traveling or vacation for example.

I'm still undecided but like you said "LDN can't hurt my situation". I can always go back on Tysabri.

Chris

[low dose naltrexone] Re: Using Tysabri

Hi,Sorry I'm getting in so late on this thread, just been so busy with wildlife issues. I do wildlife rescue and care and its baby bird season in Australia.I have had MS for well over 30 years now and have never taken any of the the so called disease modifying drugs.I did a lot of research for many years and simply figured that the odds of MAYBE being 1 of the 30% and getting a 33% improvement was not good enough considering the nasty side affects of those drugs.Then Tysabri came on the market, withdrawn from the market then back on the market told me that this drug was also not good enough.I came across LDN about 3 or 4 years ago but had problems getting a doctor to allow me to try it.Through this group I finally found a great doc who let me try LDN.I started on 1.5mg then went to 3mg where I still am, I will go to 4.5mg soon. Its been about 10 months since starting LDN and its the

best thing I have done.On 1.5mg I did get minor sleep disturbances and again when I upped to 3mg.On 3mg i also did get an increase in spacticity and muscle spasms which eventually abated. Thats why I have stayed on 3mg.Dr Bihari who started all this LDN stuff always said if spacticity and muscle spasms were an issue for MS people to stay on 3mg.I have decided to try the 4.5 because that is the best dose if you can tolerate it.Some people have taken 3 or 4 attempts to get to 4.5mg.LDN is not a magic drug that is going to cure your MS, 1 day maybe there will be a cure BUT you will see improvements.My bladder and bowel issues have improved greatly, much less fatigue and far more energy.I have not had any blurred vision in 10 months.My family are amazed at just how much I can now do.I still have to be careful, example if I have a very late night with little sleep I do feel it the next day

and need to have an easier day.Today is going to be very hectic, a lot of driving and it will be go go go all day but I will be able to do it, tomorrow I will have to make sure its an easy day.You have nothing to lose by trying LDN but give it a fair chance, some people have taken almost a year before they see the real benefits. Its 10 months for me now and I will happily continue to take my pill every night.You can always go back to Tysabri if you want but I would be surprised if you did.Good LuckSal>> I started LDN one week after my last Tysabri injection. I saw almost> immediate bladder help as well as clearer thinking. About the time

for my> next Tysabri (which I did not take) I definitely saw improvement in my> general MS symptoms (I have had MS for about 20 years). The last few weeks> I believe I am seeing the "it will get worse before it gets better". I'm> 6-7 weeks into LDN, and have no reason to stop it. The risks (none) of it> over any other MS drug make it the only intelligent choice in my mind.> Nothing I've read or heard has done anything but strengthen my resolve. I> may not get any better, but also not any worse. That's plenty good for me.> > DBoss>

[Guest guest]

LDN does more than make one feel good. It boosts / regulates the

immune system.

Art

--

> >

> > I started LDN one week after my last Tysabri injection. I saw

> almost

> > immediate bladder help as well as clearer thinking. About the

time

> for my

> > next Tysabri (which I did not take) I definitely saw improvement

in

> my

> > general MS symptoms (I have had MS for about 20 years). The last

> few weeks

> > I believe I am seeing the " it will get worse before it gets

> better " . I'm

> > 6-7 weeks into LDN, and have no reason to stop it. The risks

> (none) of it

> > over any other MS drug make it the only intelligent choice in my

> mind.

> > Nothing I've read or heard has done anything but strengthen my

> resolve. I

> > may not get any better, but also not any worse. That's plenty

good

> for me.

> >

> > DBoss

> >

>

[Guest guest]

There's at least one member here who's father uses LDN for PD.

Art

--

>

> Hi,

>

> are there any people out there who tried this LDN with Parkinson

disease?

> THanks in advance for your time.

>

[Guest guest]

I started my dad on LDN for cancer three months ago which helped put him into remission, but as for PD I haven't noticed very much difference other than being more alert. He is 93 years old, doesn't walk but he is hanging in there. I'm hoping to see improvements with PD and if not I'm still happy about LND helping his cancer.On Oct 1, 2008, at 10:51 PM, Art Hansen wrote:There's at least one member here who's father uses LDN for PD.Art-->> Hi,> > are there any people out there who tried this LDN with Parkinson disease?> THanks in advance for your time.>

[Guest guest]

does it boost and regulate the immune system because of increased endorphins?

[low dose naltrexone] Re: Using Tysabri

LDN does more than make one feel good. It boosts / regulates the immune system.Art--> >> > I started LDN one week after my last Tysabri injection. I saw > almost> > immediate bladder help as well as clearer thinking. About the time > for my> > next Tysabri (which I did not take) I definitely saw improvement in > my> > general MS symptoms (I have had MS for about 20 years). The last > few weeks> > I believe I am seeing the "it will get worse before it gets > better". I'm> > 6-7 weeks into LDN, and have no reason to stop it. The risks > (none) of it> > over any other MS drug make it the only intelligent choice in my > mind.>

> Nothing I've read or heard has done anything but strengthen my > resolve. I> > may not get any better, but also not any worse. That's plenty good > for me.> > > > DBoss> >>

[Guest guest]

How does LDN work?

LDN boosts the immune system, activating the body's own natural

defenses...

http://www.low dose naltrexone.org/index.htm#What_is_low_dose_naltrexone

Art

--

>

> does it boost and regulate the immune system because of increased

endorphins?

>

[Guest guest]

Art,

Thanks but my question was really related to how LDN accomplishes that? By increasing the bodys

production of endorphins? Or is there another LDN factor that also boosts the IM overall?Chris

[low dose naltrexone] Re: Using Tysabri

How does LDN work? LDN boosts the immune system, activating the body's own natural defenses...http://www.lowdosen altrexone. org/index. htm#What_ is_low_dose_ naltrexoneArt-->> does it boost and regulate the immune system because of increased endorphins?>

[Guest guest]

From the LDN website:

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.

Art

--

>

> Art,

> Thanks but my question was really related to how LDN accomplishes

that? By increasing the bodys

> production of endorphins? Or is there another LDN factor that also

boosts the IM overall?

> Chris

>

[Guest guest]

Art,

Thanks for clarifying that! Being new to learning about LDN I've recently read so many bits of information [over-load really] I must not of registered that!

Chris

[low dose naltrexone] Re: Using Tysabri

From the LDN website: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.Art-->> Art,> Thanks but my question was really related to how LDN accomplishes that? By increasing the bodys> production of endorphins? Or is there another LDN factor that also boosts the IM overall?> Chris>