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Old 01-26-2005, 10:21 PM   #1
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Shenandoah Gal HB User
Hi I'm New ~ LDN (Low Dose Naltrexone)

Is anyone here on LDN - Low Dose Naltrexone

I just started it last month

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Shenandoah Gal

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Old 01-27-2005, 07:54 AM   #2
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mikosha HB User
Re: Hi I'm New ~ LDN (Low Dose Naltrexone)

Hi
I am not on LDN, some are for a few years only on LDN.

Are you from New York?

MIKOSHA


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Old 01-27-2005, 02:02 PM   #3
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Shenandoah Gal HB User
Re: Hi I'm New ~ LDN (Low Dose Naltrexone)

No I'm not from NY my local alternative medicine doctor perscribed. I've only been on it for about a month, seeing some results. although its not a cure it might stop its progression.

Thanks

Shenandoah Gal

 
Old 01-27-2005, 02:58 PM   #4
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Jewel2 HB User
Re: Hi I'm New ~ LDN (Low Dose Naltrexone)

I know of many people on LDN and they swear it has made a huge difference in the progression of their MS, at least symptomatically. It can be difficult finding a doctor to prescribe it off-label for MS, especially at the conservative places like Mayo Clinic. There needs to be large scale research to validate the anecdotal success reports.

Welcome to the boards!

Julie

 
Old 03-23-2005, 02:51 PM   #5
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Paige1 HB User
Re: Hi I'm New ~ LDN (Low Dose Naltrexone)

HI there....3 years on LDN for me and it is a Godsend, believe me. I am no longer seeing any neurologists and hoping that I will never have to see another one again. I am confident that I will not have to admit to my MS at work now too. It sure is a good feeling not waiting for the other shoe to drop so to speak. I sure wish there was a way to share information more readily but this site is not condusive to that sort of thing. I'm afraid you will have to do your own research online but believe me, the information is there. Just use org and not com for the main site and good luck to you. Believe me, this will be the best information you will have researched for yourself. I am ever so thankful that I did the research and then found myself a great new doctor that is not afraid to listen and learn from my research as well. There is not a second to wait when it comes to a good treatment for MS so follow your heart and decide what it the best road to travel for yourself. Just know that we are all in this together and there will certainly be those that are willing to help you along the way.

 
Old 03-23-2005, 03:22 PM   #6
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LaDeeDa HB User
Re: Hi I'm New ~ LDN (Low Dose Naltrexone)

Welcome!
Just last week I asked my neuro about LDN. While he wouldn't discredit it, he also would not recommend it, as it has not had a controlled study to date. He believes that the main protein component is probably too quickly broken down in stomach fluid and flushed from the body to be absorbed in any beneficial way. He recommended I remain on current med since I'm having no adverse side effects other than occasional injection site irritation.
Have you had recent MRI to compare to pre-LDN MRI? Any lesion change?
Dee

Last edited by LaDeeDa; 03-23-2005 at 03:23 PM.

 
Old 03-23-2005, 03:25 PM   #7
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LaDeeDa HB User
Re: Hi I'm New ~ LDN (Low Dose Naltrexone)

Welcome!
Just last week I asked my neuro about LDN. While he wouldn't discredit it, he also would not recommend it, as it has not had a controlled study to date. He believes that the main protein component is probably too quickly broken down in stomach fluid and flushed from the body to be absorbed in any beneficial way. He recommended I remain on current med since I'm having no adverse side effects other than occasional injection site irritation.
Have you had recent MRI to compare to pre-LDN MRI? Any lesion change?
Dee

 
Old 03-23-2005, 03:41 PM   #8
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Jewel2 HB User
Re: Hi I'm New ~ LDN (Low Dose Naltrexone)

Quote:
Originally Posted by LaDeeDa
Have you had recent MRI to compare to pre-LDN MRI? Any lesion change?
Dee
That's a very good question. I have heard firsthand from some people with MS who take LDN that although their symptoms and pain improved with the LDN (perhaps the endorphins??), their MRI's still showed progression in lesions.

One concern might be that the LDN could mask the activity that is still going on behind the scenes and give a false sense of security.

I still think that because it appears to helps and there are no side effects, people should consider it as a possible option for pain and symptom relief.

Regards,
Julie

 
Old 03-23-2005, 05:07 PM   #9
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Moon Rising HB User
Re: Hi I'm New ~ LDN (Low Dose Naltrexone)

Is that the stuff(LDL) that is given through an infusion in the hospital??
I read about an infusion but your only alowed 10-12 for your lifetime and was given like every 3 months......cant remember the name of it
---Moon

Last edited by Moon Rising; 03-23-2005 at 05:10 PM.

 
Old 03-23-2005, 05:10 PM   #10
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Jewel2 HB User
Re: Hi I'm New ~ LDN (Low Dose Naltrexone)

LDN is a very inexpensive pill (approx $35-$40 per month without insurance) that is taken orally. It definitely has a lot of positive factors to it!

 
Old 03-24-2005, 05:33 PM   #11
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LaDeeDa HB User
Re: Hi I'm New ~ LDN (Low Dose Naltrexone)

Hi Jewel,
In your earlier response you state: "I still think that because it appears to help and there are no side effects, people should consider it as a possible option for pain and symptom relief" yet you know of people on LDN whose MRI show progression of lesions. I'm confused; wouldn't you consider lesion progression a side effect? While the person might not have obviously signs of disease, new lesions would indicate disease progression, no?
Dee

 
Old 03-24-2005, 06:17 PM   #12
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Jewel2 HB User
Re: Hi I'm New ~ LDN (Low Dose Naltrexone)

Hi Dee,
No, lesion progression isn't a side effect of LDN. The lesions are part of MS and can increase with or without the LDN.

What I was trying to say is that people with MS who use LDN are giving testimony left and right that LDN, at a minimum, offers good symptom relief. However, I also know that some of them still continue to find more lesions on their MRIs. All I'm saying is that I think that it is important that a person using LDN and experiencing good results should continue to be monitored by their doctor and get regular MRIs.

Because there haven't been any trials of LDN in people with MS, nobody can say factually if, how and why it helps. There's seems to be evidence that it increases a person's endorphin levels, which naturally helps with pain.

There are even hypotheses that LDN can slow MS progression and modify the course of the disease, but until extensive studies are done, this is still just speculation.

But it is pretty well known that in low doses, naltrexone does not cause any serious side effects (versus naltrexone in high dosages and other MS drugs).

So in my humble opinion, if at a minimum it helps with MS symptoms (and it might possibly slow the progression) and it doesn't harm the body, why not try it if nothing else is helping your MS?

Is that clear as mud?

Take care,
Julie

 
Old 03-25-2005, 08:59 AM   #13
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LaDeeDa HB User
Talking Re: Hi I'm New ~ LDN (Low Dose Naltrexone)

Jewel,
Oops, I misspoke. I understand LDN's possible side effect is not lesion progression. What I should have said is, that while taking LDN, symptoms may diminish or disappear entirely, giving the person a false sense of wellness; meanwhile, the possibility of lesion marches on, unbeknownst to the person.
I agree it is certainly an alternative, and a tantalizing one at that, provided the user realizes that periodic neurological observation is necessary.
I'll continue to be interested in this approach, so if you come across any additional information or studies, please forward it.
Thanks,
Dee

 
Old 03-25-2005, 09:16 AM   #14
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Jewel2 HB User
Re: Hi I'm New ~ LDN (Low Dose Naltrexone)



I will certainly pass along anything I find out. One thing I did read was that the University of Texas Southwestern is trying to put together a trial of MS patients and LDN, but apparently it is slow going getting it off the ground. And apparently Germany started a trial a few months ago.

So the proverbial ball is slowly rolling. Hopefully some good results will come of these trials and more emphasis will be placed on testing LDN for MS. But without the big bucks of the pharmaceutical companies to back these trials, it might be awhile.

Take care,
Julie

 
Old 03-25-2005, 10:39 AM   #15
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Paige1 HB User
Re: Hi I'm New ~ LDN (Low Dose Naltrexone)

Yea, clinical trials are important because most docs won't even consider it without that. You are right about the pharmaceutical companies. There would be no interest at any point by them because the reason that they do studies and pay the big bucks for that is simply the return on their investment in the way of a patent that would ensure a big payoff. That is why us patients are raising our own funds and will not rest until the studies are done. Not for those of us that are already on the therapy. We certainly have what we need but we persue it for the sake of those that will never be able to avail themselves of this remarkable therapy otherwise.
As far as follow up. I am 3 years now without any attacks or anything that would indicate that there has been progression so I see absolutely no reason to see a neuro or to pay large sums of money for MRI's. Until such time that I feel a need, I will not be wasting my time or money on such things. I would be happy to be part of a study if anyone asked me to do that though.

 
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