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667078 tn?1316004535

Anyone using ldn?

Anyone on low dose naltrexone for MS?  It is for detoxing from alcohol but it is also being used for fibromyalgia, Crohn's Disease, and MS especially primary progressive. Just curious about it.

Alex
5 Responses
199882 tn?1310188142
I tried it and almost died but it wasn't the pills fault it was my doctors.  Make sure you read everything before taking  it and then ask your doctor to explain the directions also.  

DO NOT TAKE ANY, NONE, ZILCH 0,  NARCOTICS WHILE TAKING LDN... That was my first and last mistake concerning LDN.

After a few days in ICU we made the decision of not trying it again because of such a bad reaction.

I had very high hopes for LDN after reading what it was doing for others but just like all medications, they are not for everyone.

I wish you the best and pray the LDN will work for you as it has for so many others.

I'll be praying,
Carol
667078 tn?1316004535
Thanks, someone told my husband, who refuses to learn anything about my disease, it was a cheap alternative to Copaxone and other DMDs. I have tried until I am blue to explain it is not the same thing at all. I just was curious if it helped those who have really bad pain. I thank God have never been on anything but Copaxone for MS.

Alex
Avatar universal
Hi Alex,

I started taking LDN a few weeks ago, and Carol is right you can't take any kind of narcotic as the LDN will cancel out it's effects.

When I talked to my dr about it and what side effects there might be she said that sometimes sleeplessness and vivid dreams, but that usually goes away after the first couple of weeks.  I only had one night of weird dreams, and can't tell that it's made a difference in my sleep pattern.

I researched it last year and talked to Elaine about it, as Craig had tried it.  Elaine helped me find a dr who prescribes the LDN and even helped me get an appt.  I will be eternally grateful to her and all the help she has been to me.

I have no health ins so can't go for all the extensive testing, but was given a clinical dx of MS by my PCP.

She prescribed the LDN for me and wanted me to file for disability, but I'm not ready to give up on myself yet and accepted the LDN, but not the disability.

After about 2 weeks of taking the LDN, first week I was on 1.5 mg and second week went to 3 mg.  I did see a marked difference in my fatigue.  I felt better and my stamina seemed to be better.  Any activity at all would wear me down after a couple of hours, now I can stay busy for 4 or 5 without wanting to cry.....haha

I've had a numb left leg from knee to ankle for almost 2 yrs now.  After the third week I noticed that the numbness was gone.  

I have had days in the last two years that I am unable to walk because of leg weakness.  Seems I had more days like that, than days I could walk without concentrating hard to take each step.  This has improved, but not totally gone away.

I do still have cold spots, spasms, and what I call the creepy crawlies, but they don't seem as severe as before the LDN.

I've had lots of problems with my eyes and they seem to be a little improved, but not as much as I'd hoped.

I am still very susceptible to symptoms brought on by getting overheated.  I live in the deep south, Alabama, so even indoors with a lot of activity it's easy to become too warm.  The LDN doesn't seem to help if this occurs and it will take a couple of days for me to recover.

I haven't had any adverse effects from taking the LDN, but as you know, everyone reacts to meds in different ways.  I also don't take any other meds, other than my vitamins.

I do know some people choose to take LDN instead of a DMD, but that has to be a personal and highly educated, choice.  And one you should talk about extensively with your dr.  

All I can tell you is what I have experienced, which has been a small improvement. I am in a different postion than you, as I don't have the opportunity to take a DMD.  I can truly say though, that I don't know that I wouldn't have made the LDN choice anyway. I am hoping that the longer I take it the more improvements I will experience.  Time will tell.

There is a yahoo group about LDN, you might want to check it out.  

I too have read where many have improved drastically by taking LDN, but it is NOT a DMD.

Here's an excerpt from something I read and this is the dr who first recognized the benefits of LDN for things other than addiction:

Bernard Bihari, MD, a New York physician studying the immune
responses in HIV AIDs patients, discovered that an ultra-low dose
of naltrexone, approximately one-tenth the usual dosage, boosts the immune system and helps fight diseases characterized by inadequate immune function, which includes autism as well as HIV, cancer, MS, and other autoimmune diseases.

The temporary inhibition of brain endorphins when given a very tiny dose of naltrexone apparently results in a reactive increase in the production of endorphins, tending to normalize the immune system with this elevation, and accomplishes its results with virtually no side effects or toxicity. Naltrexone is considered very safe and has never been reported as being addicting and is not contraindicated with any other kind of chemotherapy or other medication except narcotics (e.g. painkillers). It may slightly offset the benefits of steroids when given simultaneously, but many are using both according to internet e-list reports without problems.

When LDN is given between 9 p.m. and 2 a.m., the pituitary is alerted and the body attempts to overcome the opioid block with an endorphin elevation, staying elevated throughout the next 18 hours. Studies in human cancer patients show that LDN acts to increase natural killer cells and other healthy immune defenses, and hundreds of multiple sclerosis patients have totally halted progression of their disease for up to 8-10 years or more so far (since starting) with regular use of this medication.

Restoration of the body’s normal production of endorphins in those with cancer or autoimmune diseases is the major therapeutic action of LDN, which needs to be given only once a day between 9pm and 1-2am; that time is important as it works with the circadian rhythm to put out the needed endorphins between 2-4 am.



I hope I've helped some and that what ever you decide that it will work for you and have you feeling better.

doni

667078 tn?1316004535
THANKS Doni,
  That was what I wanted to know. I have way more inflammation in my CSF than many MS patients so I was curious.

I was in the MS Society Office today and they were encouraging me to think about disability because after you are accepted there is a 2 1/2 year mandatory wait before you can start medicaid. I am not sure either.

Good to hear from you I always like your comments.

Alex
755322 tn?1330272714
After I had a strange and awful reaction to Copaxone, I opted for LDN and at 3.0 mg per night its been great. I don't noticed any disease progression and I sure do sleep better. But one CANNOT be on narcotics, steroids or immune suppressant DMDs to take LDN. Its OK with Copaxone but not with the other DMDs for MS.

Its inexpensive and with no serious side effects, why not try it?

Khiba
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