lymegirl
08-13-2006, 02:55 PM
Hi everyone
I have not posted here before, but you can probabally tell from my name I have posted on the lyme board.
I was dx with MS almost 7 years ago, and a year ago with lyme disease. My Dr don't know if I have one or the other or both as the two diseases present the same. I am following a antibiotic protocol for lyme, since if it is MS it is a progressive form and from what I understand the CRAB drugs are for the relapse remitting form of MS.
In the course of doing some research I came across low dose naltrexone. It is a FDA approved drug in a much higher dose (50mg?) for other uses. The low dose naltrexone(3-4.5mg) has some interesting info out there on it's use for MS, cancer and many other diseases.
Just wondering if anyone has tried this and what your experience has been?
Thanks for any info you have to share.
Kim
I have not posted here before, but you can probabally tell from my name I have posted on the lyme board.
I was dx with MS almost 7 years ago, and a year ago with lyme disease. My Dr don't know if I have one or the other or both as the two diseases present the same. I am following a antibiotic protocol for lyme, since if it is MS it is a progressive form and from what I understand the CRAB drugs are for the relapse remitting form of MS.
In the course of doing some research I came across low dose naltrexone. It is a FDA approved drug in a much higher dose (50mg?) for other uses. The low dose naltrexone(3-4.5mg) has some interesting info out there on it's use for MS, cancer and many other diseases.
Just wondering if anyone has tried this and what your experience has been?
Thanks for any info you have to share.
Kim
Sponsor
mikosha
08-13-2006, 09:27 PM
Hi, Kim
A lot of people take LDN for MS with CRABS or without.
mikosha
A lot of people take LDN for MS with CRABS or without.
mikosha
IMMS
08-14-2006, 02:39 AM
I take LDN and am so happy with the results!
I tried copaxone (it was the only CRAB drug that didn't scare the life out of me!), but it actually made me worse!...several exacerbations over only a 9 month period! Since being on LDN, (getting close to a year), I've had NO exacerbations and have more energy and am better emotionally and physically than I've been in ages!
I recommend ANYONE to look into LDN. It has been proven to be helpful and it is simply not harmful!!! My neurologist (a VERY experienced Dr. who has been treating MS for over 30 years) is supportive of my choice for LDN. He views it as very homeopathic since the dosage is so low. I suggest looking into it. If you find opposition...point out that many doctors approve drugs "off label" without hesitation...that is all you are asking.
I actually get my Naltrexone in full dosage (50 mg tablets) and then dissolve one pill in a 50 ml bottle of distilled water. I then take (by dropper/syringe) 4.5 ml (equivalent to 4.5 mg) of the solution each night between 9 and 11pm. I didn't want to worry about finding a pharmacy that would compound the drug and worry about an allergic reaction to the filler that a compounding pharmacy would use. I have recommended to others to just get the full dose of Naltrexone and dissolve it themselves as I do. The other option would be to contact a recommended pharmacy...look for one online.
Best of luck,
IMMS (read "I am a mess!!"...or "I am M.S." ...a little inside joke!)
I tried copaxone (it was the only CRAB drug that didn't scare the life out of me!), but it actually made me worse!...several exacerbations over only a 9 month period! Since being on LDN, (getting close to a year), I've had NO exacerbations and have more energy and am better emotionally and physically than I've been in ages!
I recommend ANYONE to look into LDN. It has been proven to be helpful and it is simply not harmful!!! My neurologist (a VERY experienced Dr. who has been treating MS for over 30 years) is supportive of my choice for LDN. He views it as very homeopathic since the dosage is so low. I suggest looking into it. If you find opposition...point out that many doctors approve drugs "off label" without hesitation...that is all you are asking.
I actually get my Naltrexone in full dosage (50 mg tablets) and then dissolve one pill in a 50 ml bottle of distilled water. I then take (by dropper/syringe) 4.5 ml (equivalent to 4.5 mg) of the solution each night between 9 and 11pm. I didn't want to worry about finding a pharmacy that would compound the drug and worry about an allergic reaction to the filler that a compounding pharmacy would use. I have recommended to others to just get the full dose of Naltrexone and dissolve it themselves as I do. The other option would be to contact a recommended pharmacy...look for one online.
Best of luck,
IMMS (read "I am a mess!!"...or "I am M.S." ...a little inside joke!)
Davizona
08-14-2006, 02:52 AM
Hi, Kim
A lot of people take LDN for MS with CRABS or without.
mikosha
Hi, I use LDN as well.
I was under the impression that it SHOULDNT be used with the crab drugs other than Copaxone
A lot of people take LDN for MS with CRABS or without.
mikosha
Hi, I use LDN as well.
I was under the impression that it SHOULDNT be used with the crab drugs other than Copaxone
Frederick1
08-14-2006, 03:05 PM
IMMS,
are you saying their is proof that LDN is an effective treatment for MS? I wasn't aware that any studies have been done. in the field of medical research proof usually comes in the form of clinical trials that can show both efficacy and safety. Isn't the data on LDN and MS pretty much all anecdotal?
Thank for your reply,
Fred
are you saying their is proof that LDN is an effective treatment for MS? I wasn't aware that any studies have been done. in the field of medical research proof usually comes in the form of clinical trials that can show both efficacy and safety. Isn't the data on LDN and MS pretty much all anecdotal?
Thank for your reply,
Fred
lilc
08-16-2006, 03:16 PM
Davizona, from what I've read, LDN is not recommended for use with CRABs other than Copaxone. The rest are interferons that act as immuno-supressants. LDN acts on the immune system as well, in a somewhat opposite manner. It sounds as if it sort of makes the immune system "smarter" (so it stops attacking good things like myelin).
I asked my neuro if I could take it, she wouldn't prescribe it...sigh.
I asked my neuro if I could take it, she wouldn't prescribe it...sigh.
lymegirl
08-20-2006, 10:35 AM
Thanks everyone for your replies.
I am going to look further into LDN. If anyone has a Dr recommendation for NJ please let me know.
Kim
I am going to look further into LDN. If anyone has a Dr recommendation for NJ please let me know.
Kim