Where are most of the patients on LDN?

A board to discuss Low Dose Naltrexone (LDN) as a treatment for Multiple Sclerosis

Where are most of the patients on LDN?

Postby amelia » Tue Jan 10, 2006 8:58 am

I went to meeting last night and no one had ever heard of LDN. I had not either until looking at this site. Where are you all located? I am in Southeastern USA and want to know if there are others in the USA or is this a Canada or England thing?
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Postby CureOrBust » Wed Jan 11, 2006 3:19 am

i am in australia. If your just finding out about LDN now, you may want to look at http://www.ldninfo.org/

I think the history shows it started in america.
In 1985, Bernard Bihari, MD, a physician with a clinical practice in New York City, ...
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Postby Brownsfan » Wed Jan 11, 2006 4:32 pm

Cincinnati, Ohio
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Postby stsolakos » Thu Jan 12, 2006 1:04 pm

Hi.

I live in Patra, Greece.

I believe there must be around 30 to 40 thousands LDNers around the globe. AFAIK there are only 6 in Greece. Most patients are located in North America. This is because the LDN research initially took place there.

Stavros
If God created MS, Devil would create Rebif to treat it!
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Postby remnants » Thu Jan 12, 2006 11:38 pm

Hello Amelia,

I find it quite sad that knowledge of this potential treatment is not well known throughout the different M.S. communities everywhere and that both doctors and patients are not getting better information. I tell every M.S. patient I meet about LDN. While it may not help everyone, it appears to help a significant number of people.

I am located in WI and have been taking LDN for one year. I believe I discovered LDN in a google general search. I have had a very difficult time finding a doctor willing to even discuss LDN. However, I did come across a site with interesting, supportive information regarding LDN that may help it become known to a larger population. I'm relatively new to posting, but here goes - I hope this link works (maybe it has already been posted on this site):

http://www.leg.state.vt.us/docs/legdoc. ... JRH006.HTM

I would assume there must be a significant number of M.S. patients in Vermont taking LDN or interested in taking LDN.

Interestingly, I have never had any person or doctor mention the antibiotic treatments discussed on this site either. I guess we really need to be proactive with our treatments and research/knowledge. This site is simply the best source of information.

Best Regards.

Cindy
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My location

Postby JoyceF » Sat Jan 14, 2006 11:30 am

I'm just north of Chicago myself. I too spread the news wherever I can. It just becomes very depressing when I do this and it is not met with the eagerness that I had for it when I first found it. I think there is just so much brainwashing out there regarding who is your best health advocate. Unfortunately these days, I't not your doctor.
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Postby remnants » Sun Jan 15, 2006 2:18 am

Hi Joyce,

Good to see a familiar name. How are you doing??? Sad to see that you are getting discouraged. Don't give up the effort. You're one of the first peope I contacted when I stumbled upon LDN. Where would we be if there weren't people like you and Sarah out there sharing their experiences on forums like this. I haven't experienced another exacerbation since I started LDN and my prognosis was not good. According to one neurologist, I have an estimated two more exacerbations to go before I am a paralyzed from the neck down. The P.A. of another neuro confirmed this prognosis a year later. That is when I began taking the LDN. Everything is still functioning. I'm still walking and looking forward to gardening this Spring. I can't say that I have had the same level of success that you and some others have had, but I believe the LDN is helping/slowing the progression.

Stay Positive!!! :D

Cindy
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Postby JoyceF » Sun Jan 15, 2006 8:27 am

Hi Cindy,
I knew that your name looked familiar. So glad to hear that things are going well for you. It is such a depressing thing to think that there is nothing that you can do for your situation but wow...what a great feeling when you find out...wait, there is something!
Oh, I'm not giving up but I do get sad for those that, for whatever reason, are not able to see what we see when we look at the facts that are presented.
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Postby amelia » Mon Jan 16, 2006 9:34 am

Amen on not waiting on a doctor to tell you anything. We love our doctor and don't plan on changing, but I am afraid we are more up to date on info about treatments then she is. All the DRs we know basically stick you on the CRABs and if they don't work, sorry, the MS is going to get you. :roll: Why shouldn't someone give up on fighting this beast with medical advice like that! IF my husband had listened to DRs, different ones, in the early 1980s, he would be dead! They said he would never walk again. Not only did he walk, but he went to work roofing houses. This job after he had been paralyed about 6 times in 2 years from the neck down. So anybody discouraged? Just remember that MS can turn around without any notice and it can stop attacking you for no apparent reason. That is the hope that keeps us going.
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