Re: HELP - Going to doctor tomm..............

[Guest guest]

I had NO luck whatsoever on Avonex, and I wasn't willing to try any of the others since I've heard more bad than good. Actually, the only thing good that I have heard wasn't convincing to me that it was the drug that was causing slow/no progression rather than that was just the way that that particular individual would have progressed anyway. My opinion is that the ABCRs are synthetic chemicals that, in the long-run, cannot be good for our bodies.

At least on LDN, I feel as though my progression has stopped. Too bad I was very progressed when I found out about it. I hope that in time my body may repair itself.

Until then, it's LDN and a few supplements and a healthy diet. I started LDN in Nov '03, and I am better now in several ways.

Marcie (PPMS)

In a message dated 8/25/2004 7:11:47 AM Central Standard Time, stevieandjeni@... writes:

I was just recently dx with MS. I have been on steroid treatments to get me back on track (walking and eyesight). This has helped me - at least I can walk steadily now and most of the numbness is gone - The double vision is gone but I am still not seeing as clearly as I used to

[Guest guest]

Oh boy, you should get a lot of responses from folks here. Many have given up the ABC drugs, now referred to as "CRABS", and are quite happy with LDN. Some have continued to take Copaxone with the LDN. I have never taken the CRABS, but am very pleased with LDN.

I'll leave it to others to respond in detail, I have to get to work early today. But remember that your neuro is not necessarily your best friend, and the CRABS are not all they are cracked up to be.

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

From: stevieandjeni

low dose naltrexone

Sent: Wednesday, August 25, 2004 6:08 AM

Subject: [low dose naltrexone] HELP - Going to doctor tomm..............

I was just recently dx with MS. I have been on steroid treatments to get me back on track (walking and eyesight). This has helped me - at least I can walk steadily now and most of the numbness is gone - The double vision is gone but I am still not seeing as clearly as I used to..............My question is this. When I first was dx the neurologist was telling me that I need to start on therapy with one of the ABC drugs - I assume that is what she will prescribe me tomm. Just last nite I stumbled upon something that was talking about LDN, which I had never heard of before. Have any of you ever been on the shots? Did you have any luck with the shots or only with this LDN? I am just trying to get some feedback in order to bring it up to my neurologist tomm........Any help you could provide would be great :-)

[Guest guest]

Steve,

I am sure you will get many replies to that question, many kind, helpful and 1 or 2 highly intelligent people here with a lot of experience.

Personally I have only been on the LDN for 60 days. I have not had the 'amazing' response that some people have had here, but still it may be stopping the progression for me and it is helping me get small things back. I believe that it is worth 'something', it sure is turning some peoples lives around here.

I am on Copaxone and what I have garnered from the posts here is that it is OK to take both, though I have also read that the Copaxone will slow the benefits that you may get from the LDN. Before the Copax I was on Avonex (hate it! Have you seen the size of those needles yet?) and Rebif which resulted in the flu 2 out of 3 times (so hated that too!). None of the ABCs stop the progression. Copax is the best to date that I have tried, but I am still progressing.

MS affects people in so many different ways, no one can say that the next stop will be X and then . . . It's a day by day dance with the MonSter, MS sucks, as one person has said, get a grip and just do the best that you can. Look, learn and don't forget to live

Bottom line is get onto some thing NOW!

My pitch would be to go for the Copaxone with a side order LDN. You will find there are some that have had no ABCs, just straight onto the LDN (once they found it), now their glass is ½ full again, mine is starting to look that way too.

My thoughts are with you and, I assume, your wife, XGRAF

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

From: stevieandjeni

low dose naltrexone

Sent: Wednesday, August 25, 2004 4:08 PM

Subject: [low dose naltrexone] HELP - Going to doctor tomm..............

I was just recently dx with MS. I have been on steroid treatments to get me back on track (walking and eyesight). This has helped me - at least I can walk steadily now and most of the numbness is gone - The double vision is gone but I am still not seeing as clearly as I used to..............My question is this. When I first was dx the neurologist was telling me that I need to start on therapy with one of the ABC drugs - I assume that is what she will prescribe me tomm. Just last nite I stumbled upon something that was talking about LDN, which I had never heard of before. Have any of you ever been on the shots? Did you have any luck with the shots or only with this LDN? I am just trying to get some feedback in order to bring it up to my neurologist tomm........Any help you could provide would be great :-)

[Guest guest]

--- In low dose naltrexone , " stevieandjeni " <stevieandjeni@y...>

wrote:

> I was just recently dx with MS. I have been on steroid treatments to

> get me back on track (walking and eyesight). This has helped me - at

> least I can walk steadily now and most of the numbness is gone - The

> double vision is gone but I am still not seeing as clearly as I used

> to..............My question is this. When I first was dx the

> neurologist was telling me that I need to start on therapy with one

> of the ABC drugs - I assume that is what she will prescribe me tomm.

> Just last nite I stumbled upon something that was talking about LDN,

> which I had never heard of before. Have any of you ever been on the

> shots? Did you have any luck with the shots or only with this LDN?

> I am just trying to get some feedback in order to bring it up to my

> neurologist tomm........Any help you could provide would be great :-)

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

Stevie,

I would get on LDN immediately. But your neuro is certainly NOT going to be for

LDN at all because number 1, it will not make him/her any money, number 2, the

theory of MS scientists is that our immune system is over-active and needs to be

suppressed. Dr. Bihari feels that people with auto-immune diseases have low

endorphin levels and uses LDN to upregulate/boost those endorphins back up

towards normal. I feel Dr. Bihari is correct. My 15 year chronic progressive

MS has stopped dead in its tracks on LDN since I started 4.5mg of LDN 1 year and

a few months ago and I never took the ABCR MS drugs so I got lucky and got much

symptom improvement on LDN. So far, several people who have taken the MS drugs

for many years, especially Rebif seem to have a harder time with LDN working

100% in their bodies to halt progression. The ones of us who have never used any

of the ABCR's are having remarkable results on LDN. Copaxone is the only MS drug

that is compatible with LDN, none of the interferons are compatible, they work

against LDN. Do not fight with your neuro on the LDN script since you are a

newbie to MS. If neuro insists on an MS drug, ask for Copaxone and immediately

call your General Practioner and ask for an appointment, copy off the homepage

of the LDN website and the LDN and MS section and our posts to you

and take it to your GP and aske for a script of LDN at either 3.0mg to start

with and eventually going up to 4.5mg in the first 3 months. I would use Irmat

pharmacy in NY as the compounding pharmacy to mix the LDN since Dr. Bihari uses

them and trusts them. Also print off the Reliability Problem With Compounding

Pharmacies and give that to your GP. If your GP will not prescribe LDN, come

back to us and we will tell you how to definitely get it. Once you start on LDN

you need to avoid any medication that suppresses the immune system, like

steroids and interferons. Steroids are just temporary fixes and at points you

may absolutely need them but usually those who have never used any of the ABCR

durgs for MS who go on LDN will not need any steroids. My mom refused chemo to

keep her from getting breast cancer again but she opted for using 4.5mg of LDN

as her cancer preventative and so far so good. We had a phone consultation with

Dr.Bihari back in early June about my mom and it was well worth the money.

My opinion only, I belive if you use any of the MS drugs and continue with

steroid use you will be lessening your chances of getting the optimal benefits

of LDN which can stop your MS progression dead in its tracks. LDN should be the

FIRST option of treatment to a newly diagnosed MS patient. But since LDN is not

going to make anyone millionaires or billionaires, LDN will not get the clinical

trial it deserves.

Dr. Bihari has had to even use as high as 6.0mg of LDN to halt some of his MS

patient's progression. I believe these patients have used the ABCR drugs in the

past though but I'm not 100% sure. You being newly diagnosed you have the best

chance of getting 100% benefit from LDN.

[Guest guest]

Hey Steve,

Like several on the LDN board have already said, don't be so quick to agree

to take the " CRAB " drugs your neurologist will likely try to put you on.

There is nothing wrong about listening to her reasoning then going ahead and

doing more research yourself on other options to manage your MS. Your lucky

you found LDN at the onset of your MS. Many, me included have found LDN to

be the right choice. Good luck, you can learn a lot just reading some of

the posts on this site.

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

From: stevieandjeni [mailto:stevieandjeni@...]

Sent: Wednesday, August 25, 2004 9:08 AM

low dose naltrexone

Subject: [low dose naltrexone] HELP - Going to doctor tomm..............

I was just recently dx with MS. I have been on steroid treatments to get me

back on track (walking and eyesight). This has helped me - at least I can

walk steadily now and most of the numbness is gone - The double vision is

gone but I am still not seeing as clearly as I used to..............My

question is this. When I first was dx the neurologist was telling me that I

need to start on therapy with one of the ABC drugs - I assume that is what

she will prescribe me tomm.

Just last nite I stumbled upon something that was talking about LDN, which I

had never heard of before. Have any of you ever been on the shots? Did you

have any luck with the shots or only with this LDN?

I am just trying to get some feedback in order to bring it up to my

neurologist tomm........Any help you could provide would be great :-)