Dr. Mirkin's Fitness and Health Forum: low dose naltrexone

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Gusvick
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Topic: low dose naltrexone
Posted: 17 Feb 2009 at 1:36pm

Hi has anyone heard of low dose naltrexone for autoimmune disease ? it sounds very promising you can get information on it at edited out _Admin

Edited by Jericho - 17 Aug 2009 at 2:02pm

beak

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Jericho
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Posted: 18 Feb 2009 at 9:29am

I could very well be wrong about this but I thought Naltrexone was used to help people overcome addictions to substances like alcohol, morphine and other opiates.

I am not sure it can be used to fight any autoimmune disease as it takes the form of a substituted oxymorphone. As this is metabolised through the liver by an enzyme whose name I have forgotten and execreted through the kidneys, it is difficult to see how it could be of any use for an autoimmune condition.

However, I could be wrong on this one and would appreciate it if someone could put me right should that be the case.

Jericho
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Gusvick
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Posted: 18 Feb 2009 at 10:31am

Hi Jericho this is called low dose naltrexone it is a much smaller dose than what is used for addictions it sounds very encouraging ,Iwould love to rry it myself if I could find a Doctor to prescribe it for me some Doctors will but they are hard to find. there is a lot of infomation on there website well worth reading www.lowdosenaltrexone.org if you read this I would like to hear what you think.

beak

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Jericho
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Posted: 18 Feb 2009 at 11:29am

Hello Gusvick,

Good to hear from you. I have had a look at the website with the url you kindly supplied. I have looked at most of the trials referred to on it.

I have to say that I am not particularly impressed.

First point: the numbers of people/subjects involved were very small indeed. One trial had 40 subjects. Another 36. Another had 80 people being tested. One had not even reached its goal numbers of 36 - they had only managed 20 volunteers so far. While all testing is important, the numbers involved here are not significant at all. Far too few from which to extrapolate any claims.

Second point: None of the trials seemed to be of the gold standard double blind quality. This would necessarily invalidate any results.

Third point: Naltrexone is an opioid receptor atagonist, whatever the doseage. The amount might affect its efficacy but does not change its nature. It alters the production of endorphins. It may make you feel good, or not. That may make you feel happier. It will not change your immune response.

Fourth point : There are indeed other websites discussing low dose naltrexone and its uses. They are all offering subjective statements without much hard evidence. I have no desire to be offensive to anyone who finds this useful, but many cases are people who really, to be blunt, do not have a lot to lose by taking it. The websites are full of language like "could" "might" "may" "thought to be" helpful. I understand how these folks feel and I am glad that they have hope. But it is not scientific and, in my opinion, not a basis for taking a very powerful mood changing drug.

I would be very surprised if you could find a doctor worth his qualifications willing to prescribe this.

However, I could very well be wrong and am willing to listen to any opinion and evidence you may have.

Look forward to hearing from you.

Regards................

Edited by Jericho - 18 Feb 2009 at 11:30am

Jericho
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tamrakat
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Posted: 17 Aug 2009 at 11:20am

Dear Jericho,

I am a participant in the Stanford Phase II Low Dose Naltrexone (LDN) for Fibromyalgia Clinical Trial. The dose is 4.5 mg and it does something very different at that dose than it does at the 50 mg dose it was approved for in 1984 for the treatment of alcohol and drug addiction.

Here is the website for the Phase II study: http://snapl.stanford.edu/ldn/ This is an 18-week phase II study with approximately 31 participants.

I have suffered with fibromyalgia and many autoimmune diseases for the past 25 years. After beginning this double blind, placebo-controlled, cross-over study on June 1st, 2009, my pain level dropped from an 8 to a 2 in the first week. Some days it is ZERO! :-) All other symptoms followed my pain curve.

When I first read about LDN I thought it was snake oil. I'm a skeptic by nature and don't trust altnernative treatments, and this sounded alternative to me, but when I saw the trial was at Stanford and I live within driving distance, I figured I had nothing to lose.

Now all I can say is THANK GOD I joined the study. I have my life back! The first 4 weeks were wonderful, the next 6 weeks, which I suspect was when I was on placebo, were progressively difficult, and now during the last part of the trial I'm pretty sure I'm back on LDN since 8/12. My IBS, Fibro-pain, CFS, PMS, depression and anxiety attacks are all gone.

You are wise to be skeptical too, but please wait till the research is in from this trial. Dr. Jarred Younger and Dr. Sean Mackey of Stanford Medical Center Pain Lab are running the trial, and Dr. Younger tells me (with a big smile) that this second trial is going "even better" than the pilot study. If you're interested please research the work of Dr. Bernard Bihari. His was the research that prompted Drs Mackey and Younger to do this study as well as hearing several positive reports from their own patients in the pain lab.

By the way, both Stanford studies were privately funded by people who have been helped by LDN. Because it is a generic drug, Big Pharma won't fund clinical trials since they have nothing to gain and clinical trials cost millions. There is a huge grass roots movement to get the word out about Low dose Naltexone. No one makes any money from this, not me, not the other 100,000 other people taking LDN for autoimmune and neurological diseases, we just feel so thankful for having found out about LDN and want to "pay it forward" by telling everyone about this amazing little generic drug. Having suffered for so long, I don't want anyone else to suffer needlessly when they can take LDN and get their lives back.

Also wanted to add that Drs Younger and Mackey have stated very clearly that LDN in the 4.5 mg dose is LESS TOXIC than baby aspirin. I know, it sounds too good to be true, and yet it is true. Here I am, pain free after all these years....

Please have an open mind and look into the scientific hard evidence.

Studies of LDN have also been done for MS at UCSF: http://painsandiego.files.wordpress.com/2009/05/ldn-in-ms-bruce-cree-md_-2008-ucsf-poster.pdf

and for Crohn's disease at Penn State: http://www.ncbi.nlm.nih.gov/pubmed/17222320

and there are many other clinical trials still in progress.

Most respectfully,

Tamra

Tamra in Gilroy

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Jericho
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Posted: 17 Aug 2009 at 12:28pm

Hello Tamra,

How lovely to hear from you !

I am so pleased that this low dose Naltrexone is working for you.

Some of the findings from the studies you point us towards are very exciting. I still am slightly concerned that the numbers of people participtaing in the trials are low. However, by the very nature of the illnesses and their combinations, I think the numbers of people are always going to be low until the studies have a higher profile.

The important points you make are these :-

it seems to work:

therefore it gives people hope and a chance to get on with their lives:

it is probably less toxic than taking in a lungful of traffic fumes.

This is extremely good news.

Thank you for putting me right. I am always very happy to be proved wrong - particularly when people are thriving, growing and healing.

As you quite rightly say, when the results are in.....................

Meanwhile, I am delighted you are getting your life back.

Keep us up to date with your progress, either by private email or through this forum - please.

Yours, in gratitude,

Jericho

Jericho
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Long after people have forgotten what you said, they will remember how you made them feel.

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LDN User
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Posted: 17 Aug 2009 at 1:51pm

Hello

I would like to share my wonderful experience so far being on LDN. I live in Saskatchewan Canada I am a 47 year old male. I have had RRMS for 2 years now. I have had 3 bouts of optic neuritis and 3 bouts of the ms hug. I was on Rebif up until 9 weeks ago when I started LDN. I finally found a doctor that is prescribing it to other MS patients. She prescribed 4.5 mg for me and sent me on my way.
I stopped the Rebif injections immediately. It was my own decision to stop the injections. Reason being is that LDN promotes and boosts the immune system and Rebif suppresses it. I did not want that internal battle going on within my body.
My symptoms at the start of me taking LDN were. I had cold numbness in my hands and feet, to the point that it was painful to wear socks and shoes and gloves or mitts. I also had the sensation of bands around both of my knees. I also had a sinus infection at the time of starting LDN. I also had no energy and was full of aches and pains. My mental awareness and thinking skills were diminishing. In general my health was maybe 50% of what I was prior to the start of ms.

Within 3 days of taking 4.5 mg of LDN I noticed improvements in my hands and feet and the bands around my knees were gone. My sinus infection was gone in 3 days with no other medication than LDN. My general health and mental awareness strongly improved. After 1 week on LDN I was a new man. I went from feeling like I was an 80-year-old man getting close to a wheelchair to a 30 year old man full of energy and excitement. I became alive again and got out and was able to be "Normal". My wife says to everyone now I can't keep up to him it's wonderful.
It is 9 weeks now since starting LDN and my hand and feet are almost numb free and I have had no side effects from using LDN. I feel like I am 30 years old again. I know that I will be on LDN until there is a cure. LDN has changed my life forever. I hope that everyone else has the same results. LDN is a wonder drug for me.

Tere are a few websites about LDN that are worth reading every word. LDN is not a gimic and it is helping people. Just copy and paste the address's into your web browser. Another way to find out about LDN is use Google and type in LDN or Low Dose Naltrexone. There are hundreds of web pages. I found the ones below to be the most informative about LDN.

I am posting this information to get the word out about LDN.

ldninfo.org/index.htm

sclerotics.wordpress.com/

friendswithms.com/low_dose_naltrexone.htm#about LDN

whitakerwellness.com/our-therapies/ldn-a-lifesaving-drug/

whitakerwellness.com/our-therapies/low-dose-naltrexone-ldn/

whitakerwellness.com/our-therapies/low-dose.naltrexone-testimonials/

Let me know if anyone has had similar success with LDN. I know one other person on LDN for MS and she is the one who told me about it. She is having as good of success as I am having.

Those who suffer know the most.

Good luck

Edited by LDN User - 19 Aug 2009 at 2:14am

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tamrakat
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Posted: 17 Aug 2009 at 2:21pm

Hello Jericho,

Thank you for your kind response! <:o)

I will post again at the conclusion of the phase II trial.

Yours respectfully,

Tamra

Tamra in Gilroy

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donna1167
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Posted: 17 Aug 2009 at 3:16pm

I have suffered from relapsing Polychondritis for almost 2 years. This causes severe pain and swelling to the cartilage of my ears. Left untreated this will progress to the cartilage in the rest of my body. Once I was diagnosed I was put on various immunosuppresants such as Methotrexate and Imuran. I was on the maximum dose for both of these drugs, but still I would flare up.

To control a flare I would have to go on a course of Prednisone. This worked but many side effects would crop up. Once I would taper off my Prednisone it would be a maximum of 2 weeks when I would have to start it all over again.

Finally I asked if I could try LDN as nothing else seemed to be working. I have been on LDN for over 3 months now and have only had one flare in all that time. The flare didn't last long and I only needed a few short days on Prednisone. Before the full blown flare would start I would have a day here and there where I thought it would start up, but the next morning I would wake up and the pain had disappeared. Eventually it did lead to a flare, but only one!!!

That was weeks ago now and there is still no sign of any flare. This drug has been a godsend to me. My doctor is so impressed he has written me a full year's prescription.

As for side effects, these have been minimal. Some people say that it caused insomnia with them for a couple of weeks but that it settled down soon enough. I was the opposite. Within an hour of taking it I just want to crawl into bed. I find that I'm getting a better sleep with it too. The only side effect that I really noticed was slight nausea after taking it for the first few days. However, I found that if I drank a glass of milk with it instead of water that feeling went away. I can now take the drug with water instead of milk now too.

I am loathe to call this a wonderdrug, but I honestly think this drug is doing wonders for me and would urge anyone with any kind of automimmune disorder to at least check it out.

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GoWest
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Posted: 17 Aug 2009 at 4:25pm

I have followed Dr. Mirkin's work for years because he understands that chronic infections may be the cause of so-called "autoimmune disease." If you read the concept behind the effect of low dose naltrexone it makes sense that LDN will help by boosting and modulating immune system function. It probably will not be the cure, but will be helpful.

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Other Health Issues and Conditions
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Author	Message
Gusvick Newbie Joined: 16 Feb 2009 Location: Canada Online Status: Offline Posts: 3	Topic: low dose naltrexone Posted: 17 Feb 2009 at 1:36pm
	Hi has anyone heard of low dose naltrexone for autoimmune disease ? it sounds very promising you can get information on it at edited out _Admin Edited by Jericho - 17 Aug 2009 at 2:02pm
	beak
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Jericho Admin Group Administrator Joined: 02 Sep 2006 Online Status: Offline Posts: 501	Posted: 18 Feb 2009 at 9:29am
	I could very well be wrong about this but I thought Naltrexone was used to help people overcome addictions to substances like alcohol, morphine and other opiates. I am not sure it can be used to fight any autoimmune disease as it takes the form of a substituted oxymorphone. As this is metabolised through the liver by an enzyme whose name I have forgotten and execreted through the kidneys, it is difficult to see how it could be of any use for an autoimmune condition. However, I could be wrong on this one and would appreciate it if someone could put me right should that be the case.
	Jericho Senior Instructor United Kingdom Long after people have forgotten what you said, they will remember how you made them feel.
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Gusvick Newbie Joined: 16 Feb 2009 Location: Canada Online Status: Offline Posts: 3	Posted: 18 Feb 2009 at 10:31am
	Hi Jericho this is called low dose naltrexone it is a much smaller dose than what is used for addictions it sounds very encouraging ,Iwould love to rry it myself if I could find a Doctor to prescribe it for me some Doctors will but they are hard to find. there is a lot of infomation on there website well worth reading www.lowdosenaltrexone.org if you read this I would like to hear what you think.
	beak
	IP Logged

Jericho Admin Group Administrator Joined: 02 Sep 2006 Online Status: Offline Posts: 501	Posted: 18 Feb 2009 at 11:29am
	Hello Gusvick, Good to hear from you. I have had a look at the website with the url you kindly supplied. I have looked at most of the trials referred to on it. I have to say that I am not particularly impressed. First point: the numbers of people/subjects involved were very small indeed. One trial had 40 subjects. Another 36. Another had 80 people being tested. One had not even reached its goal numbers of 36 - they had only managed 20 volunteers so far. While all testing is important, the numbers involved here are not significant at all. Far too few from which to extrapolate any claims. Second point: None of the trials seemed to be of the gold standard double blind quality. This would necessarily invalidate any results. Third point: Naltrexone is an opioid receptor atagonist, whatever the doseage. The amount might affect its efficacy but does not change its nature. It alters the production of endorphins. It may make you feel good, or not. That may make you feel happier. It will not change your immune response. Fourth point : There are indeed other websites discussing low dose naltrexone and its uses. They are all offering subjective statements without much hard evidence. I have no desire to be offensive to anyone who finds this useful, but many cases are people who really, to be blunt, do not have a lot to lose by taking it. The websites are full of language like "could" "might" "may" "thought to be" helpful. I understand how these folks feel and I am glad that they have hope. But it is not scientific and, in my opinion, not a basis for taking a very powerful mood changing drug. I would be very surprised if you could find a doctor worth his qualifications willing to prescribe this. However, I could very well be wrong and am willing to listen to any opinion and evidence you may have. Look forward to hearing from you. Regards................ Edited by Jericho - 18 Feb 2009 at 11:30am
	Jericho Senior Instructor United Kingdom Long after people have forgotten what you said, they will remember how you made them feel.
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tamrakat Newbie Joined: 17 Aug 2009 Location: United States Online Status: Offline Posts: 4	Posted: 17 Aug 2009 at 11:20am
	Dear Jericho, I am a participant in the Stanford Phase II Low Dose Naltrexone (LDN) for Fibromyalgia Clinical Trial. The dose is 4.5 mg and it does something very different at that dose than it does at the 50 mg dose it was approved for in 1984 for the treatment of alcohol and drug addiction. Here is the website for the Phase II study: http://snapl.stanford.edu/ldn/ This is an 18-week phase II study with approximately 31 participants. I have suffered with fibromyalgia and many autoimmune diseases for the past 25 years. After beginning this double blind, placebo-controlled, cross-over study on June 1st, 2009, my pain level dropped from an 8 to a 2 in the first week. Some days it is ZERO! :-) All other symptoms followed my pain curve. When I first read about LDN I thought it was snake oil. I'm a skeptic by nature and don't trust altnernative treatments, and this sounded alternative to me, but when I saw the trial was at Stanford and I live within driving distance, I figured I had nothing to lose. Now all I can say is THANK GOD I joined the study. I have my life back! The first 4 weeks were wonderful, the next 6 weeks, which I suspect was when I was on placebo, were progressively difficult, and now during the last part of the trial I'm pretty sure I'm back on LDN since 8/12. My IBS, Fibro-pain, CFS, PMS, depression and anxiety attacks are all gone. You are wise to be skeptical too, but please wait till the research is in from this trial. Dr. Jarred Younger and Dr. Sean Mackey of Stanford Medical Center Pain Lab are running the trial, and Dr. Younger tells me (with a big smile) that this second trial is going "even better" than the pilot study. If you're interested please research the work of Dr. Bernard Bihari. His was the research that prompted Drs Mackey and Younger to do this study as well as hearing several positive reports from their own patients in the pain lab. By the way, both Stanford studies were privately funded by people who have been helped by LDN. Because it is a generic drug, Big Pharma won't fund clinical trials since they have nothing to gain and clinical trials cost millions. There is a huge grass roots movement to get the word out about Low dose Naltexone. No one makes any money from this, not me, not the other 100,000 other people taking LDN for autoimmune and neurological diseases, we just feel so thankful for having found out about LDN and want to "pay it forward" by telling everyone about this amazing little generic drug. Having suffered for so long, I don't want anyone else to suffer needlessly when they can take LDN and get their lives back. Also wanted to add that Drs Younger and Mackey have stated very clearly that LDN in the 4.5 mg dose is LESS TOXIC than baby aspirin. I know, it sounds too good to be true, and yet it is true. Here I am, pain free after all these years.... Please have an open mind and look into the scientific hard evidence. Studies of LDN have also been done for MS at UCSF: http://painsandiego.files.wordpress.com/2009/05/ldn-in-ms-bruce-cree-md_-2008-ucsf-poster.pdf and for Crohn's disease at Penn State: http://www.ncbi.nlm.nih.gov/pubmed/17222320 and there are many other clinical trials still in progress. Most respectfully, Tamra
	Tamra in Gilroy
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Jericho Admin Group Administrator Joined: 02 Sep 2006 Online Status: Offline Posts: 501	Posted: 17 Aug 2009 at 12:28pm
	Hello Tamra, How lovely to hear from you ! I am so pleased that this low dose Naltrexone is working for you. Some of the findings from the studies you point us towards are very exciting. I still am slightly concerned that the numbers of people participtaing in the trials are low. However, by the very nature of the illnesses and their combinations, I think the numbers of people are always going to be low until the studies have a higher profile. The important points you make are these :- it seems to work: therefore it gives people hope and a chance to get on with their lives: it is probably less toxic than taking in a lungful of traffic fumes. This is extremely good news. Thank you for putting me right. I am always very happy to be proved wrong - particularly when people are thriving, growing and healing. As you quite rightly say, when the results are in..................... Meanwhile, I am delighted you are getting your life back. Keep us up to date with your progress, either by private email or through this forum - please. Yours, in gratitude, Jericho
	Jericho Senior Instructor United Kingdom Long after people have forgotten what you said, they will remember how you made them feel.
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LDN User Newbie Joined: 17 Aug 2009 Location: Canada Online Status: Offline Posts: 1	Posted: 17 Aug 2009 at 1:51pm
	Hello I would like to share my wonderful experience so far being on LDN. I live in Saskatchewan Canada I am a 47 year old male. I have had RRMS for 2 years now. I have had 3 bouts of optic neuritis and 3 bouts of the ms hug. I was on Rebif up until 9 weeks ago when I started LDN. I finally found a doctor that is prescribing it to other MS patients. She prescribed 4.5 mg for me and sent me on my way. I stopped the Rebif injections immediately. It was my own decision to stop the injections. Reason being is that LDN promotes and boosts the immune system and Rebif suppresses it. I did not want that internal battle going on within my body. My symptoms at the start of me taking LDN were. I had cold numbness in my hands and feet, to the point that it was painful to wear socks and shoes and gloves or mitts. I also had the sensation of bands around both of my knees. I also had a sinus infection at the time of starting LDN. I also had no energy and was full of aches and pains. My mental awareness and thinking skills were diminishing. In general my health was maybe 50% of what I was prior to the start of ms. Within 3 days of taking 4.5 mg of LDN I noticed improvements in my hands and feet and the bands around my knees were gone. My sinus infection was gone in 3 days with no other medication than LDN. My general health and mental awareness strongly improved. After 1 week on LDN I was a new man. I went from feeling like I was an 80-year-old man getting close to a wheelchair to a 30 year old man full of energy and excitement. I became alive again and got out and was able to be "Normal". My wife says to everyone now I can't keep up to him it's wonderful. It is 9 weeks now since starting LDN and my hand and feet are almost numb free and I have had no side effects from using LDN. I feel like I am 30 years old again. I know that I will be on LDN until there is a cure. LDN has changed my life forever. I hope that everyone else has the same results. LDN is a wonder drug for me. Tere are a few websites about LDN that are worth reading every word. LDN is not a gimic and it is helping people. Just copy and paste the address's into your web browser. Another way to find out about LDN is use Google and type in LDN or Low Dose Naltrexone. There are hundreds of web pages. I found the ones below to be the most informative about LDN. I am posting this information to get the word out about LDN. ldninfo.org/index.htm sclerotics.wordpress.com/ friendswithms.com/low_dose_naltrexone.htm#about LDN whitakerwellness.com/our-therapies/ldn-a-lifesaving-drug/ whitakerwellness.com/our-therapies/low-dose-naltrexone-ldn/ whitakerwellness.com/our-therapies/low-dose.naltrexone-testimonials/ Let me know if anyone has had similar success with LDN. I know one other person on LDN for MS and she is the one who told me about it. She is having as good of success as I am having. Those who suffer know the most. Good luck Edited by LDN User - 19 Aug 2009 at 2:14am
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tamrakat Newbie Joined: 17 Aug 2009 Location: United States Online Status: Offline Posts: 4	Posted: 17 Aug 2009 at 2:21pm
	Hello Jericho, Thank you for your kind response! <:o) I will post again at the conclusion of the phase II trial. Yours respectfully, Tamra
	Tamra in Gilroy
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donna1167 Newbie Joined: 17 Aug 2009 Location: United States Online Status: Offline Posts: 1	Posted: 17 Aug 2009 at 3:16pm
	I have suffered from relapsing Polychondritis for almost 2 years. This causes severe pain and swelling to the cartilage of my ears. Left untreated this will progress to the cartilage in the rest of my body. Once I was diagnosed I was put on various immunosuppresants such as Methotrexate and Imuran. I was on the maximum dose for both of these drugs, but still I would flare up. To control a flare I would have to go on a course of Prednisone. This worked but many side effects would crop up. Once I would taper off my Prednisone it would be a maximum of 2 weeks when I would have to start it all over again. Finally I asked if I could try LDN as nothing else seemed to be working. I have been on LDN for over 3 months now and have only had one flare in all that time. The flare didn't last long and I only needed a few short days on Prednisone. Before the full blown flare would start I would have a day here and there where I thought it would start up, but the next morning I would wake up and the pain had disappeared. Eventually it did lead to a flare, but only one!!! That was weeks ago now and there is still no sign of any flare. This drug has been a godsend to me. My doctor is so impressed he has written me a full year's prescription. As for side effects, these have been minimal. Some people say that it caused insomnia with them for a couple of weeks but that it settled down soon enough. I was the opposite. Within an hour of taking it I just want to crawl into bed. I find that I'm getting a better sleep with it too. The only side effect that I really noticed was slight nausea after taking it for the first few days. However, I found that if I drank a glass of milk with it instead of water that feeling went away. I can now take the drug with water instead of milk now too. I am loathe to call this a wonderdrug, but I honestly think this drug is doing wonders for me and would urge anyone with any kind of automimmune disorder to at least check it out.
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GoWest Newbie Joined: 17 Aug 2009 Location: United States Online Status: Offline Posts: 1	Posted: 17 Aug 2009 at 4:25pm
	I have followed Dr. Mirkin's work for years because he understands that chronic infections may be the cause of so-called "autoimmune disease." If you read the concept behind the effect of low dose naltrexone it makes sense that LDN will help by boosting and modulating immune system function. It probably will not be the cure, but will be helpful.
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Topic: low dose naltrexone
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