zadie
06-15-2008, 09:46 PM
I have been reading up on this drug and am interested in hearing personal experiences with this drug .I am not sure who mentioned it but I read it on this site and then started looking up about it.Is this a real thing or would doctors boo hoo it.
Michele
Michele
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MSJayhawk
06-15-2008, 10:12 PM
My friend in Japan will be starting ldn according to his last e-mail. His doctor cited to him the studies done in Italy. It is being used to treat a variety of autoimmune diseases.
Bearygood
06-16-2008, 08:55 AM
Hi, Michele. I think this is the thread you're looking for. (Start from post #10)
http://www.healthboards.com/boards/showthread.php?t=73208
It's off-label for MS so not every doctor is willing to prescribe it but I would certainly say it's the "real thing". I have seen way too many stories on LDN to not believe it has potential benefits -- not everyone has reported success but very many have.
http://www.healthboards.com/boards/showthread.php?t=73208
It's off-label for MS so not every doctor is willing to prescribe it but I would certainly say it's the "real thing". I have seen way too many stories on LDN to not believe it has potential benefits -- not everyone has reported success but very many have.
Canadian gal
06-16-2008, 02:52 PM
Hi Michele,
Bearygood has provide a link for you, which may help answer some of your questions.
I started on LDN when there weren’t too many people on it yet. I have helped many, many people get started on it, mostly by providing them information to present to their doctor, coaching them through the initial side-effects (very minor normally), etc.
My neurologist thought it was “snake oil” and laughed it off when I first asked for it. I had to convince my doctor by first threatening to go on the internet to get it, and ultimately doing up a “risk assessment” document for him. He did his own research, but he wanted to be sure I knew what I was getting myself into. Now he will rx it to anyone who asks, because he’s seen how it works for me, and he knows it is safe.
The neurologists at the Research Center I went to also started rxing it to patients who wanted to try it. (I know there is a new director at that Research Center, so I don’t know his take . . . but my friend still gets her LDN rx from that location.)
It is important to use a reputable compounding pharmacy, and I would definitely be sourcing that information before I considered taking it. Using the right fillers to compound is critical.
People take it in the hopes that it will not only improve their symptoms, but also to slow progression and reduce/stop attacks. Last I heard, they felt 2/3 of the people who used it experienced notable symptom improvement, and the majority saw no or little advancement in the disease process. Some might give up though, especially if they don’t get the symptom improvement they hope for.
To be honest, if one of my kids ended up with MS, I would try LDN before I tried anything else we have available. It can be combined with Copaxone (it is not recommended with the interferons, at least until recent trials are completed), and that is a good option as well.
Cherie
Bearygood has provide a link for you, which may help answer some of your questions.
I started on LDN when there weren’t too many people on it yet. I have helped many, many people get started on it, mostly by providing them information to present to their doctor, coaching them through the initial side-effects (very minor normally), etc.
My neurologist thought it was “snake oil” and laughed it off when I first asked for it. I had to convince my doctor by first threatening to go on the internet to get it, and ultimately doing up a “risk assessment” document for him. He did his own research, but he wanted to be sure I knew what I was getting myself into. Now he will rx it to anyone who asks, because he’s seen how it works for me, and he knows it is safe.
The neurologists at the Research Center I went to also started rxing it to patients who wanted to try it. (I know there is a new director at that Research Center, so I don’t know his take . . . but my friend still gets her LDN rx from that location.)
It is important to use a reputable compounding pharmacy, and I would definitely be sourcing that information before I considered taking it. Using the right fillers to compound is critical.
People take it in the hopes that it will not only improve their symptoms, but also to slow progression and reduce/stop attacks. Last I heard, they felt 2/3 of the people who used it experienced notable symptom improvement, and the majority saw no or little advancement in the disease process. Some might give up though, especially if they don’t get the symptom improvement they hope for.
To be honest, if one of my kids ended up with MS, I would try LDN before I tried anything else we have available. It can be combined with Copaxone (it is not recommended with the interferons, at least until recent trials are completed), and that is a good option as well.
Cherie
ivan1013
06-23-2008, 01:24 AM
I just took my first dose of LDN about 5 minutes ago...will keep you posted
Canadian gal
06-23-2008, 03:42 PM
I just took my first dose of LDN about 5 minutes ago...will keep you posted
CONGRATS.
So . . . how'd you go??
Did you get a rx, or are you mixing it yourself? What dosage did you start at?
Cherie
CONGRATS.
So . . . how'd you go??
Did you get a rx, or are you mixing it yourself? What dosage did you start at?
Cherie
ivan1013
06-27-2008, 01:44 PM
so far so good.... feeling better for sure. my dose is 5 mg
yay!!
thanks for asking!
yay!!
thanks for asking!
Canadian gal
06-27-2008, 02:26 PM
Way to go, starting at 5.0 mg and feeling good!! I started at 3.0 mg and it took me months to get up to 4.5mg. I am very sensitive to any med though.
Assuming "ivan" is a male, I've heard that many men (and women under 110 lbs) can't go above 3.0 mg or their spasticity acts up. If you find this, you may need to drop it down.
BTW, why 5 mg. Dr B says 4.5 mg is max, except in EXTREME/isolated cases.
Either way, good luck!!
Cherie
Assuming "ivan" is a male, I've heard that many men (and women under 110 lbs) can't go above 3.0 mg or their spasticity acts up. If you find this, you may need to drop it down.
BTW, why 5 mg. Dr B says 4.5 mg is max, except in EXTREME/isolated cases.
Either way, good luck!!
Cherie
ivan1013
06-29-2008, 02:52 AM
not sure why its 5 mg..... and Ivan1013 is my dogs name and dob....!!
I am a female and weigh about 102 lbs. so I must be lucky this time being that about 4 months ago I had my worst flare ever...long story that I will tell at some point,,,,,best to you :)
ivan1013
I am a female and weigh about 102 lbs. so I must be lucky this time being that about 4 months ago I had my worst flare ever...long story that I will tell at some point,,,,,best to you :)
ivan1013