Re: MS SPECIALIST TOLD ME NO TO LDN

[Guest guest]

Sounds like the same doc that I used to go to here in West Texas, but she moved to the metroplex area! She didn't give any merit to anything that wasn't conventional. I didn't know about LDN then but wish that I had! I took Avonex for two years with NO success. I, fortunately, did not have the bad side effects, but it did nothing to slow any progression. My suggestion to you is to get a script for LDN, and give it a good try. Don't wait until you have progressed to a point that all seems lost. She may not write it, but someone will! Best of luck to you!

Marcie

In a message dated 10/31/2004 6:33:36 PM Central Standard Time, xtara79@... writes:

I just went to a MS specialist at UT Southwestern MS Clinic a couple of days ago, which by the way is a very pro-Avonex clinic. I brought up LDN and she immediately said "no" because there haven't been any studies showing it helps treat the disease of MS itself. She said that there are alot of drugs that will make people feel better and then they mistaking think there MS is getting better. She said you need a drug that is treating the disease itself, such as the CRAB drugs. I have been on Rebif for 9 months now and can't handle the side effects anymore, such as flu-like symptoms, headache, extra fatigue, weakness in the muscles where I inject, injection-site reactions, extremely painful injections, & increasing depression/anxiety, to name a few. The Dr. wants to switch me to Avonex, which is 1x wk. versus Rebif which is 3x wk., but I know it's just more of the same side effects, except maybe for a day or two after the injection versus practically all week with Rebif. It's hard enough dealing with MS but to be told you must take these powerful drugs that are painful to take and make you feel bad all the time is almost too much to deal with. I would love to try LDN, especially since I have heard so many wonderful things about it & it's a pill!

I don't know what to do - I've got a MS specialist telling me I must take Avonex or Rebif (she doesn't like the other CRAB's) but it is ruining the quality of my life, which is hard enough, or I'm doomed to have future progressive disability. Does anyone know of any studies being done to verify if LDN treats the disease itself besides making you feel better. Thank you -

[Guest guest]

hi

i to have tried all the drugs, if you have depression now wait till the avonex kicks in.i suffer from depression and it was huge with avonex. my doc said because it it's an interferron like beta and rebif this will happen. i don't think it made much difference anyway,. i used to have rrms but now with all their wondeful drugs(joke) i have spms. i'm giving ldn a try my doc said it isn't toxic or dangerous so i have a right to at least try.i am talking to lots on the net and reaserched heaps and i haven't found one bad thing....just a few downside but thats to be expected, it stuff i can handle....i say give it a try can't hurt might make you better

raelene

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

From: low dose naltrexone

Date: 11/01/04 11:00:45

low dose naltrexone

Subject: [low dose naltrexone] MS SPECIALIST TOLD ME "NO" TO LDN

I just went to a MS specialist at UT Southwestern MS Clinic a couple of days ago, which by the way is a very pro-Avonex clinic. I brought up LDN and she immediately said "no" because there haven't been any studies showing it helps treat the disease of MS itself. She said that there are alot of drugs that will make people feel better and then they mistaking think there MS is getting better. She said you need a drug that is treating the disease itself, such as the CRAB drugs. I have been on Rebif for 9 months now and can't handle the side effects anymore, such as flu-like symptoms, headache, extra fatigue, weakness in the muscles where I inject, injection-site reactions, extremely painful injections, & increasing depression/anxiety, to name a few. The Dr. wants to switch me to Avonex, which is 1x wk. versus Rebif which is 3x wk., but I know it's just more of the same side effects, except maybe for a day or two after the injection versus practically all week with Rebif. It's hard enough dealing with MS but to be told you must take these powerful drugs that are painful to take and make you feel bad all the time is almost too much to deal with. I would love to try LDN, especially since I have heard so many wonderful things about it & it's a pill! I don't know what to do - I've got a MS specialist telling me I must take Avonex or Rebif (she doesn't like the other CRAB's) but it is ruining the quality of my life, which is hard enough, or I'm doomed to have future progressive disability. Does anyone know of any studies being done to verify if LDN treats the disease itself besides making you feel better. Thank you -

[Guest guest]

Drs. who will prescribe LDN....

Low Dose Naltrexone Forum -

Scroll down past advertisements at top of board to see list of doctors. I hope

one is close to you to go see. An MS Specialist will NEVER prescribe LDN unless

all CRAB's and Novantrone have failed and even then some still refuse to

prescribe LDN. They're too locked in to the CRAB pharmaceuticals and the money

kick-backs they get when they prescribe a CRAB. Try to get your GP to give you

a trial script of 6 months. Use one of the compounding pharmacies from the LDN

website. Dr. Bihari uses and trusts Irmat Pharmacy in NY.

http://ldn.proboards3.com/index.cgi?board=doctors & action=display & num=1079158856

[Guest guest]

I don't believe any studies have proven the CRABS to be very successful at stopping the progression, but I've heard so many people describing an extremely degraded quality of life while using them. I really wonder what their value can be?

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

From: xtara79

low dose naltrexone

Sent: Sunday, October 31, 2004 4:29 PM

Subject: [low dose naltrexone] MS SPECIALIST TOLD ME "NO" TO LDN

I just went to a MS specialist at UT Southwestern MS Clinic a couple of days ago, which by the way is a very pro-Avonex clinic. I brought up LDN and she immediately said "no" because there haven't been any studies showing it helps treat the disease of MS itself. She said that there are alot of drugs that will make people feel better and then they mistaking think there MS is getting better. She said you need a drug that is treating the disease itself, such as the CRAB drugs. I have been on Rebif for 9 months now and can't handle the side effects anymore, such as flu-like symptoms, headache, extra fatigue, weakness in the muscles where I inject, injection-site reactions, extremely painful injections, & increasing depression/anxiety, to name a few. The Dr. wants to switch me to Avonex, which is 1x wk. versus Rebif which is 3x wk., but I know it's just more of the same side effects, except maybe for a day or two after the injection versus practically all week with Rebif. It's hard enough dealing with MS but to be told you must take these powerful drugs that are painful to take and make you feel bad all the time is almost too much to deal with. I would love to try LDN, especially since I have heard so many wonderful things about it & it's a pill! I don't know what to do - I've got a MS specialist telling me I must take Avonex or Rebif (she doesn't like the other CRAB's) but it is ruining the quality of my life, which is hard enough, or I'm doomed to have future progressive disability. Does anyone know of any studies being done to verify if LDN treats the disease itself besides making you feel better. Thank you -

[Guest guest]

I too have been on copaxone and betaserson and still got worse plus all

the horrible side affects. Stopped betaserson after 8 mos. after first

informing my neuro of my wish to stop (not that I would have listened

to her - shes very good but I was not willing to deal with the

sideaffects anymore). You do your own research and listen to your own

body. Your neuro is trained to tell you the CRABS will help and they

cant guarantee that any of those drugs will improve your MS. Be in

charge of your own health care making decisions LDN has very few if any

side affects and is non toxic. I also struggled a bit with depression

but am no longer taking any anti-depressants and am feeling great. The

normal " down " time that we all with this disease are entitled to but

nothing more.

Kathy

On 31-Oct-04, at 5:49 PM, raelene yandell wrote:

> hi

> i to have tried all the drugs, if you have depression now wait till

> the avonex kicks in.i suffer from depression and it was huge with

> avonex. my doc said because it it's an interferron like beta and rebif

> this will happen. i don't think it made much difference anyway,. i

> used to have rrms but now with all their wondeful drugs(joke) i have

> spms. i'm giving ldn a try my doc said it isn't toxic or dangerous so

> i have a right to at least try.i am talking to lots on the net and

> reaserched heaps and i haven't found one bad thing....just a few

> downside but thats to be expected, it stuff i can handle....i say give

> it a try can't hurt might make you better

> raelene  

>  

> -------Original Message-------

>  

> From: low dose naltrexone

> Date: 11/01/04 11:00:45

> low dose naltrexone

> Subject: [low dose naltrexone] MS SPECIALIST TOLD ME " NO " TO LDN

>  

>

> I just went to a MS specialist at UT Southwestern MS Clinic a couple

> of days ago, which by the way is a very pro-Avonex clinic.  I brought

> up LDN and she immediately said " no " because there haven't been any

> studies showing it helps treat the disease of MS itself.  She said

> that there are alot of drugs that will make people feel better and

> then they mistaking think there MS is getting better.  She said you

> need a drug that is treating the disease itself, such as the CRAB

> drugs.  I have been on Rebif for 9 months now and can't handle the

> side effects anymore, such as flu-like symptoms, headache, extra

> fatigue, weakness in the muscles where I inject, injection-site

> reactions, extremely painful injections, & increasing

> depression/anxiety, to name a few.  The Dr. wants to switch me to

> Avonex, which is 1x wk. versus Rebif which is 3x wk., but I know it's

> just more of the same side effe

>  

>

> <partydude.gif>

>

>

>

[Guest guest]

Totally agree...even their literature doesn't promise anything. They

have to push these drugs to try and justify all the millions they've

sunk into research even if they are a failure.

On 31-Oct-04, at 6:56 PM, wrote:

> I don't believe any studies have proven the CRABS to be very

> successful at stopping the progression, but I've heard so many people

> describing an extremely degraded quality of life while using them.  I

> really wonder what their value can be? 

>  

> ----- Original Message -----

> From: xtara79

> low dose naltrexone

> Sent: Sunday, October 31, 2004 4:29 PM

> Subject: [low dose naltrexone] MS SPECIALIST TOLD ME " NO " TO LDN

>

>

> I just went to a MS specialist at UT Southwestern MS Clinic a couple

> of days ago, which by the way is a very pro-Avonex clinic.  I brought

> up LDN and she immediately said " no " because there haven't been any

> studies showing it helps treat the disease of MS itself.  She said

> that there are alot of drugs that will make people feel better and

> then they mistaking think there MS is getting better.  She said you

> need a drug that is treating the disease itself, such as the CRAB

> drugs.  I have been on Rebif for 9 months now and can't handle the

> side effects anymore, such as flu-like symptoms, headache, extra

> fatigue, weakness in the muscles where I inject, injection-site

> reactions, extremely painful injections, & increasing

> depression/anxiety, to name a few.  The Dr. wants to switch me to

> Avonex, which is 1x wk. versus Rebif which is 3x wk., but I know it's

> just more of the same side effects, except maybe for a day or two

> after the injection versus practically all week with Rebif. It's hard

> enough dealing with MS but to be told you must take these powerful

> drugs that are painful to take and make you feel bad all the time is

> almost too much to deal with. I would love to try LDN, especially

> since I have heard so many wonderful things about it & it's a pill! 

> I don't know what to do - I've got a MS specialist telling me I must

> take Avonex or Rebif (she doesn't like the other CRAB's) but it is

> ruining the quality of my life, which is hard enough, or I'm doomed

> to have future progressive disability. Does anyone know of any

> studies being done to verify if LDN treats the disease itself besides

> making you feel better.  Thank you -

>

>

>

>

>

>

>

>

[Guest guest]

In a message dated 10/31/2004 10:13:45 PM Eastern Standard Time, etna@... writes:

now and can't handle the> side effects anymore, such as flu-like symptoms, headache, extra> fatigue, weakness in the muscles where I inject, injection-site> reactions, extremely painful injections, & increasing> depression/anxiety, to name a few. The Dr. wants to switch me to> Avonex, which is 1x wk. versus Rebif which is 3x wk., but I know it's> just more of the same side effects, except maybe for a day or two> after the injection versus practically all week with Rebif. It's hard> enough dealing with MS but to be told you must take these powerful

I was on Avonex for almost a year. I had the horrible flu-like symptoms every week and in bed with them for at least two days. I can't tell you the number of times depression was so bad I thought everyone would be better off without me around.

I was switched to Copaxone, but still went from RR to SP.

Luckily, my neuro said that LDN couldn't hurt me and gave me the script. If you go back and read the archives, you will see that one of the 'side effects' of LDN is feeling better about life in general; my depression is very minimal, and I don't have those feelings of doom. It did take me a good 6 months to start feeling the effects of it however, this is my 7th month. I believe some people give up too soon.

Hope you can obtain LDN. Ypu may have to get it through on of the doctors on the list.

Good luck

Arlene

[Guest guest]

You need to take control of this yourself. I was on Avonex for over a year and

had the same horrible flu-like symptoms plus increased depression where I

wanted to kill myself, but I am a coward. My neurologist would not listen and

prescribed another year of Avonex. I quit it the next week and started looking

for a doctor who would prescribe LDN and then found a compounding pharmacy. I

feel much better now and can walk, talk, write, etc. But, only because I took

control. Doctors are on ego trips and want money.

VCL

In a message dated 10/31/2004 10:13:45 PM Eastern Standard Time, etna@... writes:

now and can't handle the> side effects anymore, such as flu-like symptoms, headache, extra> fatigue, weakness in the muscles where I inject, injection-site> reactions, extremely painful injections, & increasing> depression/anxiety, to name a few. The Dr. wants to switch me to> Avonex, which is 1x wk. versus Rebif which is 3x wk., but I know it's> just more of the same side effects, except maybe for a day or two> after the injection versus practically all week with Rebif. It's hard> enough dealing with MS but to be told you must take these powerful

I was on Avonex for almost a year. I had the horrible flu-like symptoms every week and in bed with them for at least two days. I can't tell you the number of times depression was so bad I thought everyone would be better off without me around.

I was switched to Copaxone, but still went from RR to SP.

Luckily, my neuro said that LDN couldn't hurt me and gave me the script. If you go back and read the archives, you will see that one of the 'side effects' of LDN is feeling better about life in general; my depression is very minimal, and I don't have those feelings of doom. It did take me a good 6 months to start feeling the effects of it however, this is my 7th month. I believe some people give up too soon.

Hope you can obtain LDN. Ypu may have to get it through on of the doctors on the list.

Good luck

Arlene

[Guest guest]

In a message dated 11/1/2004 2:20:47 PM Eastern Standard Time, bluemoonta@... writes:

i like you have done the same. but i was sp when starting copaxone again after being on avonex and copaxone. i am very close to pp. i am starting LDN. this is giving hope. thanks

raelene

Raelene

It may take a while, but its worth it. I thought about giving up the LDN, but remembered that Dr. Bihari recommended at least 6-9 months. Glad I didn't quit.

Arlene

[Guest guest]

hi arlene

i like you have done the same. but i was sp when starting copaxone again after being on avonex and copaxone. i am very close to pp. i am starting LDN. this is giving hope. thanks

raelene

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

From: low dose naltrexone

Date: 11/02/04 00:17:28

low dose naltrexone

Subject: Re: [low dose naltrexone] MS SPECIALIST TOLD ME "NO" TO LDN

In a message dated 10/31/2004 10:13:45 PM Eastern Standard Time, etna@... writes:

now and can't handle the> side effects anymore, such as flu-like symptoms, headache, extra> fatigue, weakness in the muscles where I inject, injection-site> reactions, extremely painful injections, & increasing> depression/anxiety, to name a few. The Dr. wants to switch me to> Avonex, which is 1x wk. versus Rebif which is 3x wk., but I know it's> just more of the same side effects, except maybe for a day or two> after the injection versus practically all week with Rebif. It's hard> enough dealing with MS but to be told you must take these powerful

I was on Avonex for almost a year. I had the horrible flu-like symptoms every week and in bed with them for at least two days. I can't tell you the number of times depression was so bad I thought everyone would be better off without me around.

I was switched to Copaxone, but still went from RR to SP.

Luckily, my neuro said that LDN couldn't hurt me and gave me the script. If you go back and read the archives, you will see that one of the 'side effects' of LDN is feeling better about life in general; my depression is very minimal, and I don't have those feelings of doom. It did take me a good 6 months to start feeling the effects of it however, this is my 7th month. I believe some people give up too soon.

Hope you can obtain LDN. Ypu may have to get it through on of the doctors on the list.

Good luck

Arlene

[Guest guest]

i agree .avonex is not worth it. i found the same. am about to start LDN. don't take avonex if you can help it.

raelene

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

From: low dose naltrexone

Date: 11/02/04 00:35:51

low dose naltrexone

Subject: Re: [low dose naltrexone] MS SPECIALIST TOLD ME "NO" TO LDN

You need to take control of this yourself. I was on Avonex for over a year and had the same horrible flu-like symptoms plus increased depression where I wanted to kill myself, but I am a coward. My neurologist would not listen and prescribed another year of Avonex. I quit it the next week and started looking for a doctor who would prescribe LDN and then found a compounding pharmacy. I feel much better now and can walk, talk, write, etc. But, only because I took control. Doctors are on ego trips and want money.VCL