Re: I'm confused and need your input

[Guest guest]

How about a brief response from everyone who has been on LDN for more than 9 months? This 6 month rumor should be easy to dispel...JT

[low dose naltrexone] I'm confused and need your input

Hi,

As some of you know, I want to try LDN. My neuro has still not gotten in touch with me about a scrip. Today my massage therapist came over and said she looked at the LDN info online and firmly believed it was a mistake! She said that somewhere she read that LDN would cause about 6 mo of relief but then cause MS'ers to decline more than before. Now, I started to think, is this fact or something I shouldn't worry about. I currently am confined to a wheelchair since a severe exacerbation in 2002. My immediate worry was that if I stopped the Rebif and did LDN how soon before I could expect a hospital stay. How many of you on LDN have had regression? She also mentioned the NMSS not endorsing this medication (I knew that!) Anyway, I now worry that maybe just maybe she could be right and despite what I've read about the relief this drug has given to MS, I could be screwing myself if I go off Rebif for LDN. (you can't take both can you?) I need some advice from people with experience with LDN.

Thanks,

Karin

[Guest guest]

Hi Karin

My personal story, have now been on LDN for 315 days starting on 3.0 mgs for 2 weeks then 4.5mgs ever since, in that time i have had no progression and have proberly got slightly better i would recomend that you try it for at least 6 mths before you make your decision as to its effectiveness, basicly youve got nothing to loose and everything to gain!

ps i also take zanaflex to reduce spasticity but only 2mgs am and 2mgs pm

[Guest guest]

Hi Karin,

415 days, no decline! Can think clearly once again. (although the wife

might debate the issue.) Overall very good symptom improvement.

There are people here who've been on this stupid little pill much longer

and will probably share their 'history' as well. As far as your massage

therapist saying it's a mistake..??? She must be talking about some

other drug like Novantrone or something. www.remedyfind.com is a

great source for testimonials, plus I'm sure others here will share their

'history' with this silly little pill. <grin> I don't have it handy, but maybe

someone will send you the link to the paper that Dr. Agrawal wrote on

ldn. Quite an eye-opener! I don't mean to be offensive and I'm not a

doctor, but your massage therapist is very much mistaken. Just my two

cents worth.

Have a Great Day,

Jim (RRMS)

Have a Great Day,

Jim(RRMS)

[low dose naltrexone] I'm confused and need your input

Hi,

As some of you know, I want to try LDN. My neuro has still not gotten in touch with me about a scrip. Today my massage therapist came over and said she looked at the LDN info online and firmly believed it was a mistake! She said that somewhere she read that LDN would cause about 6 mo of relief but then cause MS'ers to decline more than before.

[Guest guest]

Hi Karin,

415 days, no decline! Can think clearly once again. (although the wife

might debate the issue.) Overall very good symptom improvement.

There are people here who've been on this stupid little pill much longer

and will probably share their 'history' as well. As far as your massage

therapist saying it's a mistake..??? She must be talking about some

other drug like Novantrone or something. www.remedyfind.com is a

great source for testimonials, plus I'm sure others here will share their

'history' with this silly little pill. <grin> I don't have it handy, but maybe

someone will send you the link to the paper that Dr. Agrawal wrote on

ldn. Quite an eye-opener! I don't mean to be offensive and I'm not a

doctor, but your massage therapist is very much mistaken. Just my two

cents worth.

Have a Great Day,

Jim (RRMS)

[low dose naltrexone] I'm confused and need your input

Hi,

As some of you know, I want to try LDN. My neuro has still not gotten in touch with me about a scrip. Today my massage therapist came over and said she looked at the LDN info online and firmly believed it was a mistake! She said that somewhere she read that LDN would cause about 6 mo of relief but then cause MS'ers to decline more than before.

[Guest guest]

http://www.larrygc.com/mystory is my Day 220 update, followed by a 365+ day update, and a 600+ day comment.

Today is Day 656. Going on 2 full years this April.

[low dose naltrexone] I'm confused and need your input

Hi,

As some of you know, I want to try LDN. My neuro has still not gotten in touch with me about a scrip. Today my massage therapist came over and said she looked at the LDN info online and firmly believed it was a mistake! She said that somewhere she read that LDN would cause about 6 mo of relief but then cause MS'ers to decline more than before. Now, I started to think, is this fact or something I shouldn't worry about. I currently am confined to a wheelchair since a severe exacerbation in 2002. My immediate worry was that if I stopped the Rebif and did LDN how soon before I could expect a hospital stay. How many of you on LDN have had regression? She also mentioned the NMSS not endorsing this medication (I knew that!) Anyway, I now worry that maybe just maybe she could be right and despite what I've read about the relief this drug has given to MS, I could be screwing myself if I go off Rebif for LDN. (you can't take both can you?) I need some advice from people with experience with LDN.

Thanks,

Karin

[Guest guest]

Karin,

If you expect a hospital visit, you will probably get it! Nobody can tell you when it will happen. I've been in a wheelchair for over 5 years. I took Avonex for two years prior to being in the chair. It didn't help at all! I've been on LDN for 14 months. It has helped with some symptoms. At the point I'm at, it's about maintaining some quality of life, not miraculous healing, although I would take that too! I seriously doubt that your massage therapist has gotten good information, but you decide for yourself. I could probably be in a nursing home, but I refuse. I haven't gone to a hospital ever for my MS. There's nothing they can do short of steroids. My opinion of Tysabri, or Antigren as it was called 2 years ago before its trials failed, is that it misses the mark like the CRABS. Again, it's an individual's choice.

Marcie

In a message dated 1/29/2005 10:47:48 PM Central Standard Time, snoopylover_2000@... writes:

Hi,

As some of you know, I want to try LDN. My neuro has still not gotten in touch with me about a scrip. Today my massage therapist came over and said she looked at the LDN info online and firmly believed it was a mistake! She said that somewhere she read that LDN would cause about 6 mo of relief but then cause MS'ers to decline more than before. Now, I started to think, is this fact or something I shouldn't worry about. I currently am confined to a wheelchair since a severe exacerbation in 2002. My immediate worry was that if I stopped the Rebif and did LDN how soon before I could expect a hospital stay. How many of you on LDN have had regression? She also mentioned the NMSS not endorsing this medication (I knew that!) Anyway, I now worry that maybe just maybe she could be right and despite what I've read about the relief this drug has given to MS, I could be screwing myself if I go off Rebif for LDN. (you can't take both can you?) I need some advice from people with experience with LDN.

Thanks,

Karin

[Guest guest]

In a message dated 1/30/2005 12:05:18 AM Eastern Standard Time, jatrac1@... writes:

How about a brief response from everyone who has been on LDN for more than 9 months? This 6 month rumor should be easy to dispel...

I've been on LDN for almost 10 months. Didn't see the improvements many have, but I believe progression has stopped.

Just started 2 days ago the protocol Reg wrote about as far as taking it later. Set my clock for 1:30. Got off the sofa at 11:30 last night. Went to bathroom, then to bed. Woke up at 1:15 took my LDN (didn't get out of bed) and went back to sleep till 5:30 a.m. This is very different than getting up 2-3 times for bathroom visits as I had been.

I'll keep trying this way. Don 't know what to expect, but I feel better today than I have in 2 weeks.

Arlene

[Guest guest]

Karin,

I don't know if you can take both, Rebif and LDN, but I'm sure you'll get alot of imput on that from others here. What I do know, from my own experience, is that LDN has NOT made me decline after a 6 month period. I started LDN in Sept. of 2002, and have had nothing but good come out of it since. I have RRMS, relapses were occuring every 4 months, lasting longer with each one. That was with me being on Avonex first, for 2 yrs. then Copaxone, then Betaseron. None of them helped, nor did the monthly 5 day IV treatments of Solumedrol. I went from being ok, to using a cane, I was getting worse, and finally said, enough is enough!

Since being on LDN, the past 2 1/2 yrs have been wonderful. I'm back to working part time, and enjoying my life. My neuro wasn't thrilled about the fact that I stopped all my meds a month before starting LDN, but it's my body, my choice........The best choice I've ever made. Now, as my Neuro has watched me get progressivly better, and my MRI is now barely showing the existing lesions, (he told me they are healing themselves) he told me NOT to stop what I was doing. He still won't write the script, because it is not approved yet, but he knows nothing else has worked like LDN is.

I can't say LDN will work in the same way on everyone, but this is my experience. The decline in 6 months, I know, is not true. At least in my case. I will never stop taking it ~ Ever! Whatever you choose for yourself, good luck, and allow it to be Your Choice. Believing in our doctors is one thing, but believing in our own bodies first........well, that's important to me!

Keep in touch, let us know how your'e doing. There's alot of support here.

God Bless,

Carol

[Guest guest]

Karin, I was on Rebif for 1 1/2 yrs...............I felt as though I was dying a slow death. I was progressing very fast and that is why I looked into LDN. The day I stopped Rebif I felt better immediately! Started LDN 2 days later and it has been 19months and have remained exactly the way I was the day I started LDN except for better bladder control , energy and attitude!

You have probably moved to secondary progressive which Rebif does nothing for.

Your massage therapist doesn't know what she is talking about. Tell her to call mine, he is amazed at how my muscle tone has changed because I am able to do some excersise where as on the Rebif I was a dead, mushy body.

You can e-mail me directly if you wish. . Kiki

[Guest guest]

--- In low dose naltrexone , KVG <snoopylover_2000@y...>

wrote:

> Hi,

> As some of you know, I want to try LDN. My neuro has still

not gotten in touch with me about a scrip. Today my massage

therapist came over and said she looked at the LDN info online and

firmly believed it was a mistake!

Hi, Karin. My son has been taking LDN 3 mg. since June of 2004. He

was using Rebif prior to that, and stopped it 2 days before he

started LDN. He is 16 years old, and for the first time since

receiving this MS diagnosis 3 1/2 years ago, he is living the life of

a normal 16 year old. He used Avonex and Rebif in the past, and

after seeing what they did to his body and his mind, he will never

use the interferons again. His life has improved in every way on

LDN. He has unlimited energy, no heat intolerance, brain fog is gone

(as much as it could be at age 16) and he feels great. Most

importantly, he has none of the side effects from the interferons

including the depression.

I wonder if your massage therapist is confusing the controversy over

Antegren/Tysabri??? I did read a report somewhere about the

possibility of a " rebound " effect with that. Regardless, I've

researched LDN for over a year now, and I've never heard anything to

that effect. Good luck in your decision!

Kim

[Guest guest]

Started 7/08/03 , Significant improvement with urinary urgency and frequency. Noticeable improvement in leg strength. No further improvement but those mentioned have remained constant and no progression.

Regards,

Tom

[low dose naltrexone] I'm confused and need your input

Hi,

As some of you know, I want to try LDN. My neuro has still not gotten in touch with me about a scrip. Today my massage therapist came over and said she looked at the LDN info online and firmly believed it was a mistake! She said that somewhere she read that LDN would cause about 6 mo of relief but then cause MS'ers to decline more than before. Now, I started to think, is this fact or something I shouldn't worry about. I currently am confined to a wheelchair since a severe exacerbation in 2002. My immediate worry was that if I stopped the Rebif and did LDN how soon before I could expect a hospital stay. How many of you on LDN have had regression? She also mentioned the NMSS not endorsing this medication (I knew that!) Anyway, I now worry that maybe just maybe she could be right and despite what I've read about the relief this drug has given to MS, I could be screwing myself if I go off Rebif for LDN. (you can't take both can you?) I need some advice from people with experience with LDN.

Thanks,

Karin

[Guest guest]

> How about a brief response from everyone who has been on LDN for more than 9

months? This 6 month rumor should be easy to dispel...

>

> JT

===================

Karin,

Your doctor probably read about the HIGH DOSE NALTREXONE, it WILL at 50mg and up

make MS worse later on. The NMSS doesn't know what LOW DOSE NALTREXONE will do

at 3.0mg to 4.5mg because they've never tested it. Dr. Bernard Bihari has and

found it works. I kept making the mistake of listening to my neurologist and

the NMSS and kept getting worse and worse. I finally took that chance and tried

LDN and WOW!! LDN at 4.5mg for me with lactose filler has stopped my 14

straight year Chronic Progressive MS dead in its tracks(no progression/worsening

of my MS since day 1 on LDN and that was 1 year and 7 1/2 months ago). In 1

year 7 1/2 months I have not had one inkling of MS worsening since starting LDN.

[Guest guest]

Here is my story

My Experience

I have now been on LDN for 10 months. (stopped Betaseron after three years of use. was still running when I started)

I too have experienced benefits. I was a 12 Advil a day man for pain and have taken only 2 since starting LDN and they were for a headache. (Nero. has suggested other pain meds but don't want to start that slippery slope. NO NEED NOW)

I have reduced my fatigue during the day and no longer take my 1-2 hour mid day naps. I have replaced my naps with 15mins of rowing on my new concept 2 rowing machine. Have better bladder control and no longer go to the washroom at night, sometimes I may make one trip to the washroom. (Was taking 1-3 trips per night) have started to dream again which is great. Have not had dreams for about two years. Starting to feel human again.

Have increased strength - could not do a push-up for almost 2 years and since starting LDN am consistently doing 15 - 20 push-ups a night. My record for one night is 32 continues push-ups.

I walk with a cane during the day. The LDN has not improved my walking, but I do feel stronger and with continued exercise, my fingers are crossed that I may begin to see some benefits.

I am taking 3mg of LDN; tried 4.5mg but found that my body was way to stiff in the mornings. I stretch 3 times a day to help with my walking, for a total of about 1 hour.

But

I feel my walking has got worse over the last 3 months. My toe drag is much worse and I have more shaking in my arms and legs in the morning. The shaking will become less as I stretch and get moving. So who know? I feel I have still benefited from the LDN and feel like I have made the write decision but yes I am scared that I am still progressing.

Time to row.

Doug

[Guest guest]

--- In low dose naltrexone , " Doug " <stewstreet@t...>

wrote:

> Here is my story

>

>

>

> My Experience

>

> I have now been on LDN for 10 months. (stopped Betaseron after three years of

use. was still running when I started)

>

>

>

> I too have experienced benefits. I was a 12 Advil a day man for pain and have

taken only 2 since starting LDN and they were for a headache. (Nero. has

suggested other pain meds but don't want to start that slippery slope. NO NEED

NOW)

>

> I have reduced my fatigue during the day and no longer take my 1-2 hour mid

day naps. I have replaced my naps with 15mins of rowing on my new concept 2

rowing machine. Have better bladder control and no longer go to the washroom at

night, sometimes I may make one trip to the washroom. (Was taking 1-3 trips per

night) have started to dream again which is great. Have not had dreams for about

two years. Starting to feel human again.

>

> Have increased strength - could not do a push-up for almost 2 years and since

starting LDN am consistently doing 15 - 20 push-ups a night. My record for one

night is 32 continues push-ups.

>

> I walk with a cane during the day. The LDN has not improved my walking, but

I do feel stronger and with continued exercise, my fingers are crossed that I

may begin to see some benefits.

>

> I am taking 3mg of LDN; tried 4.5mg but found that my body was way to stiff in

the mornings. I stretch 3 times a day to help with my walking, for a total of

about 1 hour.

>

>

>

> But

>

>

>

> I feel my walking has got worse over the last 3 months. My toe drag is much

worse and I have more shaking in my arms and legs in the morning. The shaking

will become less as I stretch and get moving. So who know? I feel I have still

benefited from the LDN and feel like I have made the write decision but yes I am

scared that I am still progressing.

>

>

>

> Time to row.

>

>

>

> Doug

==============

Doug,

Where are you getting your LDN? What is the filler in your capsule?

If all the above is okay then 3.0mg may not be enough to halt your progression.

You may require the higher LDN dose.

[Guest guest]

Hi karin

Here I sit after a very busy sunday and reading the 150 e-mails that accrued

today.....

So I havn,t had supper yet but am on my second beer, yes I am doing well.

So before I get hammered and can't write I must tell you that whoever said

to stay away from the LDN has no idea of what they speak.

I am now at my fifteen month mark and taking my pill at 1:30 every morning 3

0 mgs has stopped my chronic progressive m s completely.

It has also stopped my brothers down hill slide completely and I figure it

is a crime to continue on any of the CRAB drugs as they are only 30%

effective anyway.

Of course this is only my humble opinion.

Reg.

[low dose naltrexone] I'm confused and need your input

Hi,

As some of you know, I want to try LDN. My neuro has still not gotten in

touch with me about a scrip. Today my massage therapist came over and said

she looked at the LDN info online and firmly believed it was a mistake! She

said that somewhere she read that LDN would cause about 6 mo of relief but

then cause MS'ers to decline more than before. Now, I started to think, is

this fact or something I shouldn't worry about. I currently am confined to a

wheelchair since a severe exacerbation in 2002. My immediate worry was that

if I stopped the Rebif and did LDN how soon before I could expect a hospital

stay. How many of you on LDN have had regression? She also mentioned the

NMSS not endorsing this medication (I knew that!) Anyway, I now worry that

maybe just maybe she could be right and despite what I've read about the

relief this drug has given to MS, I could be screwing myself if I go off

Rebif for LDN. (you can't take both can you?) I need some advice from people

with experience with LDN.

Thanks,

Karin

[Guest guest]

Let me first say that I need o thank someone here for letting me know

about LDN in the first place ( Dave from Arizona) who I know got

banned from alot of boards because of telling people about LDN but it

was he who spoke up when I was at my losest!

I was dx in Oct 2003 and started Copaxone ( that we all know now does

not work) and was going downhill fast when I ran into Dave on another

chat site and he told me about LDN.

I am very sceptical by nature so I thought that this must be too good

to be true so having a bit of a medical background I researched LDN.

I used all the resources that I had including nurses and pharmicists.

I went to my GP with all the info and we agreed to try it hat was Jan

9 2004 and I have been on 4.5mg LDN ever since.

I work full time, and am a mother to an active 4 year old and a wife.

I not only can still do all of these great things day to day but

durning this time I have had 2 MRI's a year apart and they do not

lie!!

Just before my last one which is the one that used to see how the LDN

was working I started a new job with a long commute and sold my house

and lived with my inlaws for a few weeks before getting into the new

house and had some marital problems. If this does not spell relapase

I do not know what does!! But thanks to LDN I came through with

flying colors no relapses and when I had the MRI there was no

progression ( no more lessions then the last time!! ) so does LDN

work well for me it does and for myself and my family I will never

stop taking LDN!!!!!!

[Guest guest]

, I've been on LDN for 13 months and though I haven't had any serious

symptom relief, I have definitely not progressed.

--

No virus found in this outgoing message.

Checked by AVG Anti-Virus.

Version: 7.0.300 / Virus Database: 265.8.3 - Release Date: 1/31/2005

[Guest guest]

Karin, there are some stories of people having severe exacerbations

after starting LDN. I don't think you hear about them in this forum

since those that have had it probably won't stick around the forums.

I know of one person that swears they are getting worse on LDN.

Another person was prescribed it by my wife's doctor. He took it

about a month or two (perhaps longer) with great symtom relief and

then had a major attack that left him in a wheel chair.

With that said, there is simply not enough information for you to make

a sound decision. Even my wife's doctor prescribed LDN for her,

probably with the belief that one case is simply not statistically

significant. There is no way to know if LDN actual affected these

people negatively.

Personally, I think it's worth a try until more research can be done.

As far as I can tell, the positive stories outweight the negative

ones. Just take a look at the number 1 remedy at

http://remedyfind.com/hc-Multiple-Sclerosis.asp

.......

On Sat, 29 Jan 2005 20:46:36 -0800 (PST), KVG

<snoopylover_2000@...> wrote:

>

>

> Hi,

> As some of you know, I want to try LDN. My neuro has still not gotten

> in touch with me about a scrip. Today my massage therapist came over and

> said she looked at the LDN info online and firmly believed it was a mistake!

> She said that somewhere she read that LDN would cause about 6 mo of relief

> but then cause MS'ers to decline more than before. Now, I started to think,

> is this fact or something I shouldn't worry about. I currently am confined

> to a wheelchair since a severe exacerbation in 2002. My immediate worry

> was that if I stopped the Rebif and did LDN how soon before I could expect a

> hospital stay. How many of you on LDN have had regression? She also

> mentioned the NMSS not endorsing this medication (I knew that!) Anyway, I

> now worry that maybe just maybe she could be right and despite what I've

> read about the relief this drug has given to MS, I could be screwing myself

> if I go off Rebif for LDN. (you can't take both can you?) I need some

> advice from people with experience with LDN.

> Thanks,

> Karin

[Guest guest]

hi well i don't know about these people but i've been on ldn 4 months until then i was going down fast. i had all the crab drugs with no success.ldn has been the best thing i have ever done. i have symptom improvement...a bonus....and disease progression seems to have stopped. i know this as prior to ldn i had 7 attacks in 10 months. in 4 months since ldn nothing. i'm doing great on the stuff and will continue to use it till they find a cure.

raelene

-- Re: [low dose naltrexone] I'm confused and need your input

Karin, there are some stories of people having severe exacerbationsafter starting LDN. I don't think you hear about them in this forumsince those that have had it probably won't stick around the forums.I know of one person that swears they are getting worse on LDN. Another person was prescribed it by my wife's doctor. He took itabout a month or two (perhaps longer) with great symtom relief andthen had a major attack that left him in a wheel chair.With that said, there is simply not enough information for you to makea sound decision. Even my wife's doctor prescribed LDN for her,probably with the belief that one case is simply not statisticallysignificant. There is no way to know if LDN actual affected thesepeople negatively.Personally, I think it's worth a try until more research can be done. As far as I can tell, the positive stories outweight the negativeones. Just take a look at the number 1 remedy athttp://remedyfind.com/hc-Multiple-Sclerosis.asp.......On Sat, 29 Jan 2005 20:46:36 -0800 (PST), KVG<snoopylover_2000@...> wrote:> > > Hi, > As some of you know, I want to try LDN. My neuro has still not gotten> in touch with me about a scrip. Today my massage therapist came over and> said she looked at the LDN info online and firmly believed it was a mistake!> She said that somewhere she read that LDN would cause about 6 mo of relief> but then cause MS'ers to decline more than before. Now, I started to think,> is this fact or something I shouldn't worry about. I currently am confined> to a wheelchair since a severe exacerbation in 2002. My immediate worry> was that if I stopped the Rebif and did LDN how soon before I could expect a> hospital stay. How many of you on LDN have had regression? She also> mentioned the NMSS not endorsing this medication (I knew that!) Anyway, I> now worry that maybe just maybe she could be right and despite what I've> read about the relief this drug has given to MS, I could be screwing myself> if I go off Rebif for LDN. (you can't take both can you?) I need some> advice from people with experience with LDN. > Thanks, > Karin

[Guest guest]

Karin,

I started June 1st and have had no more exacerbations. I have even

improved in some ways. I'm not taking anything else except supplements.

[Guest guest]

Karin,

This is just my opinion on LDN, I personally am one of the people

that feel like I have gotten worse on LDN. I originally was taking

Rebif and stopped, I was having exacerbations about every 3months on

the Rebif, so I thought LDN sure couldn't hurt either. After

starting LDN I had exacerbations every month then, my muscle spasms

were better but I know the disease was progressing worse. I did get

an MRI after 6 months and it also showed new lessions forming. I

orginally thought that the LDN was helping the muscle spasms but I'm

not sure on that anymore, my neuro told me that Rebif can actually

cause the muscle spasms too. So it might have been me just quitting

the Rebif that helped the muscle spasms, not the LDN. I've seen

allot of people on here make the comment that, " you have nothing to

lose by tring the LDN " , I probably disagree, bc in my case it

actually might be making it worse. It's 100% your choice. I believe

made a good comment to you also, about the people who it

didn't work for have left the group, so you might not always be

getting a good sampling of answers on here. Mostly only PROLDN

answers, I personally wish some of the people that it didn't work

for, or still isn't working for would also chime in still. Anedotal

information needs negative information to be fair and accurate.

Also, I am still taking it, maybe just still hoping for a miracle.

Feel free to email me if you have any questions.

4.5mg filled at Skips

Nebraska

Hi,

As some of you know, I want to try LDN. My neuro has still not

gotten

in touch with me about a scrip. Today my massage therapist came

over and

said she looked at the LDN info online and firmly believed it was

mistake!

She said that somewhere she read that LDN would cause about 6 mo of

relief

but then cause MS'ers to decline more than before. Now, I started to

think,

is this fact or something I shouldn't worry about. I currently am

confined

to a wheelchair since a severe exacerbation in 2002. My immediate

worry

was that if I stopped the Rebif and did LDN how soon before I could

expect a

hospital stay. How many of you on LDN have had regression? She also

mentioned the NMSS not endorsing this medication (I knew that!)

Anyway, I

now worry that maybe just maybe she could be right and despite what

I've

read about the relief this drug has given to MS, I could be screwing

myself

if I go off Rebif for LDN. (you can't take both can you?) I need

some

advice from people with experience with LDN.

Thanks,

Karin

[Guest guest]

Why do you have to get off of Rebif to get on LDN? I've been on

Avonex and LDN for 7 months. I know the thinking is that they are

not compatible because Avonex is an immunosuppressant. Avonex is

not an immunosuppressant. It is an immunomodulator like Copaxone

which they say is compatible with LDN. Go to the NMSS web site and

you'll see that they list all CRABs as immunomodulator. Do a Google

web search with Interferon and Immunomodulator. Most of the

scientific results define it as an immunomodulator. I've spoken

directly with Biogen and they told me that is an Immunomodulator and

not an Immunosuppressant.

I feel I am having good success with taking both and my neurologist

agreed with me yesterday. If I do have problems, I will let be the

first to admit it.

I would like to know the source on the 6 month statement that you

massage therapist cited. I have not seen that anywhere in my 2

years of following LDN.

Do your own research and carefully decide for yourself.

> Hi,

> As some of you know, I want to try LDN. My neuro has still

not gotten in touch with me about a scrip. Today my massage

therapist came over and said she looked at the LDN info online and

firmly believed it was a mistake! She said that somewhere she read

that LDN would cause about 6 mo of relief but then cause MS'ers to

decline more than before. Now, I started to think, is this fact or

something I shouldn't worry about. I currently am confined to a

wheelchair since a severe exacerbation in 2002. My immediate worry

was that if I stopped the Rebif and did LDN how soon before I could

expect a hospital stay. How many of you on LDN have had

regression? She also mentioned the NMSS not endorsing this

medication (I knew that!) Anyway, I now worry that maybe just

maybe she could be right and despite what I've read about the relief

this drug has given to MS, I could be screwing myself if I go off

Rebif for LDN. (you can't take both can you?) I need some advice

from people with

> experience with LDN.

> Thanks,

> Karin