Low dose Naltrexone
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Hi Frank
I think that may have been me further back on the thread when quoting something Dr. Zagon had written. It was discussed a lot on one of the LDN Yahoo groups.
www.forums.aboutmecfs.org/showthread.php?379-Low-dose-Naltrexone&p=92840#post92840
It's post number 503
As I said thinking it's an immune modulator is purely my take on it and I'm sure other people would disagee. I totally accept that I can be completely wrong in this but since I've managed to get my head around so much I've read and come to this conclusion I'll stick with it for now.
I'd be interested to see if you can remember where you read it if it wasn't on the previous post I'd written above.
I think that may have been me further back on the thread when quoting something Dr. Zagon had written. It was discussed a lot on one of the LDN Yahoo groups.
www.forums.aboutmecfs.org/showthread.php?379-Low-dose-Naltrexone&p=92840#post92840
It's post number 503
As I said thinking it's an immune modulator is purely my take on it and I'm sure other people would disagee. I totally accept that I can be completely wrong in this but since I've managed to get my head around so much I've read and come to this conclusion I'll stick with it for now.
I'd be interested to see if you can remember where you read it if it wasn't on the previous post I'd written above.
have just been given a script to try tramal again and was reassured by the dr that it would be not even vaguely addictive (VERY bad experience getting off morphine/oxycontin after a few years on that) so find this a bit scary. also looking into trying LDN after some good feedback from a few people in our local support group so great to read of other peoples experiences - thanks for sharing.
http://www.fibromyalgia-association...landtrials/494-ldn-conference-2010-in-glasgow
Thoughts on how LDN may work
LDN is an immune modulator and can possibly boost the immune system to help increase the production of endorphins. It was explained that the method by which LDN may help people with FM is that it would affect the behaviour of some cells in the brain called microglia. Microglias are a type of glial cells that are the resident white blood cells of the brain and spinal cord, and thus act as the first and main form of active immune defence in the central nervous system (CNS).
It was put forward that the microglia become stuck in an activated state and flares are perhaps a microglial response. Clearly more work is required to replicate these results and delve further into mechanisms, possible side effects and treatment protocol
Thoughts on how LDN may work
LDN is an immune modulator and can possibly boost the immune system to help increase the production of endorphins. It was explained that the method by which LDN may help people with FM is that it would affect the behaviour of some cells in the brain called microglia. Microglias are a type of glial cells that are the resident white blood cells of the brain and spinal cord, and thus act as the first and main form of active immune defence in the central nervous system (CNS).
It was put forward that the microglia become stuck in an activated state and flares are perhaps a microglial response. Clearly more work is required to replicate these results and delve further into mechanisms, possible side effects and treatment protocol
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LDN working for me
Three months ago I started LDN my doctor put me on 1.5mg at first and it made me really sick. My doctor then put me on .75mg and it still made me sick, so thought I would try taking it for a week then off a week. I was feeling just a little better. A little over two months ago I was looking at my bottle of prozac and thought maybe i'll stop taking these and try the LDN with out my antidepressants. My life went from having to lay down all the time to not being able to sit still. I do pace myself because I know better after 17 years of CFS. I don't post often here but I wanted to share this info. Also going off my antidepressant after being on them for 15 years was hell, everything annoyed me and my tolerence for stupidity was zero. After a month my edginess went away.
Three months ago I started LDN my doctor put me on 1.5mg at first and it made me really sick. My doctor then put me on .75mg and it still made me sick, so thought I would try taking it for a week then off a week. I was feeling just a little better. A little over two months ago I was looking at my bottle of prozac and thought maybe i'll stop taking these and try the LDN with out my antidepressants. My life went from having to lay down all the time to not being able to sit still. I do pace myself because I know better after 17 years of CFS. I don't post often here but I wanted to share this info. Also going off my antidepressant after being on them for 15 years was hell, everything annoyed me and my tolerence for stupidity was zero. After a month my edginess went away.
I am a bit confused about LDN myself i only take 0.5mg but have been taking it on and off for a year - if i take larger amount it sets of auto-immune pain in my pelvis but occasionally I seem to register something very moderately good from this amount - trouble is when I stop i feel awful which to be honest is the main reason I am still on it. I don't mean as I was prior I mean differently awful if that makes sense.
C
Non pwc's get this drug at 100 times the dose we take it and they feel nothing at all except an abrupt cessation of opiate drug effects. I have never heard of a pwc having a benign response to LDN.....it's always very good, or very bad. I too feel that says a lot about how a study on the mechanism of action of this drug may reveal some significant findings with CFS. I have the same response to LDN today that I had 10 years ago....AWEFUL!
Wow, you tried this 10 years ago?! I thought the dosing for "druggies" was 50mg and a person should try to get to 4.5mg? So that would be 10 times, correct?
C
Actually it was 12+ years ago (1998). Interesting how these treatments recycle in popularity. I see that with lots of things people are trying for ME/CFS.
Yea, I was looking at the usual opiate antagonist dose of 50mg being 100 times the 0.5mg dose that people suggest to start with for immune modulation. So yea, 50mg would be ~10 times a 4.5mg dose.
ps...not just druggies that get Naltrexone...I've had to give it more than once in the hospital for narcotic reactions. But mostly it's given in the ER and the EMT's for drug overdoses. The stuff works amazingly fast. It completely blocks the effects of opiates, which does tend to make some people angry.
Yea, I was looking at the usual opiate antagonist dose of 50mg being 100 times the 0.5mg dose that people suggest to start with for immune modulation. So yea, 50mg would be ~10 times a 4.5mg dose.
ps...not just druggies that get Naltrexone...I've had to give it more than once in the hospital for narcotic reactions. But mostly it's given in the ER and the EMT's for drug overdoses. The stuff works amazingly fast. It completely blocks the effects of opiates, which does tend to make some people angry.
Picking up this thread again after Sensing Progess's report on her visit to Nancy Klimas and Dr. Klimas's comments on LDN.
There is the question of why it helps some, and others have a bad response. Maybe those of us who have experience taking LDN could tease-out some of the differences in our disease-profiles and get some clues? I respond very well to LDN and have been on it over a year.
I'll start: didn't have a viral onset that I am aware of; sick off and on to different degrees for decades; XMRV positive; do have a bunch of other viruses; do not have MCS; have a lot of autonomic nervous system involvement; have had a lot of toxic exposure (including 13 amalgams--since removed), a lot of vaccinations, and have done a lot of detox work of various sorts; probably have Lyme.
Anyone else want to comment?
Sushi
There is the question of why it helps some, and others have a bad response. Maybe those of us who have experience taking LDN could tease-out some of the differences in our disease-profiles and get some clues? I respond very well to LDN and have been on it over a year.
I'll start: didn't have a viral onset that I am aware of; sick off and on to different degrees for decades; XMRV positive; do have a bunch of other viruses; do not have MCS; have a lot of autonomic nervous system involvement; have had a lot of toxic exposure (including 13 amalgams--since removed), a lot of vaccinations, and have done a lot of detox work of various sorts; probably have Lyme.
Anyone else want to comment?
Sushi
Great idea, Sushi.
I did NOT do well with LDN (or Imunovir, or most other things, really). I had a sudden onset, which could have been viral or bacterial or blood transfusion related. Have not tested for XMRV yet. Severe autonomic involvement which has improved some with time but still hinders me quite a bit. Not MCS per se but very sensitive to chemicals - but not enough to drive me into the wilderness or get fillings removed. Immunologic work up by Klimas showed the 'typical' CFS/ME results of chronic inflammation, an unbalanced, TH2 dominant immune system and low NK cell function.
I did NOT do well with LDN (or Imunovir, or most other things, really). I had a sudden onset, which could have been viral or bacterial or blood transfusion related. Have not tested for XMRV yet. Severe autonomic involvement which has improved some with time but still hinders me quite a bit. Not MCS per se but very sensitive to chemicals - but not enough to drive me into the wilderness or get fillings removed. Immunologic work up by Klimas showed the 'typical' CFS/ME results of chronic inflammation, an unbalanced, TH2 dominant immune system and low NK cell function.
C
Sushi, I agree that our extreme responses to LDN are diagnostic. I have a horrible bad response to it....probably worse than anything else. And I can tell that whatever that mechanism may be, is at the core of the problem. Although my onset was sudden, it was only at a mild-moderate level. The trigger was stress and Hep B vaccine....I had no acute infectious trigger. The symptoms were all immune...."The flu that wouldn't go away", achy, swollen glands, intermittent PEM, brain fog, and sleep problems. This went on for 10 years slowly progressing mostly due to being stuck in the "push-crash" cycle. Around year 10, I crashed into severe illness that became all Neurological symptomatically. At this point I developed severe OI with POTS & NMH, severe cognitive problems, and severe PEM....spent 3 years in bed. The Immune symptoms and sleep problems stopped completely. Pain has never been one of my symptoms. More when I return. Off to Tahoe.
I'm a he not a her! =P
Ho, Ho! 
Sorry!
Guess we guess wrong half the time on gender!
Sushi
Sorry! Guess we guess wrong half the time on gender!
Sushi
I am xmrv+ and had symptoms since birth, gradually getting worse and LDN had a bad nett effect (did help for some days). canadian conensus; mostly neuro + endocrinological at first, LDN made my OI and fatigue worse. chronic inflammation, killer cells not too bad, chemically sensitive but not very severe (can not do chlorine tho) no pain.
XMRV status not determined yet, anxiously awaiting results! I had sudden onset with Mono, no MCS. Moderately impacted with this damn disease. I had a rough start, although to be fair I started in the middle of a flare up! 1994 Fukuda definition. Male, so no confusion. Cholstryamine with Chlorella detox for over 3 months over 1 year ago. Had 4 amalgalms removed about 1 year ago now, only 2 left, hope to have them replaced by end of year.
GG
Edit: PS Wanted to mention that I think LDN helped a lot with my IBS.
GG
Edit: PS Wanted to mention that I think LDN helped a lot with my IBS.
Not sure if my onset could be described as sudden or not - over 2 winters had worst flu ever - lasted 10 weeks but recovered - then the next year woke up one day with severe weakness, chills, shortness of breath, muscle pain. Since then periods of relapse and remission - 8 year remission in 1990s.
Now at my worst - bedridden for one year - all over severe pain, severe weakness (can only walk about 20 yards), chills, sweating, painful glands, stabbing pain behind eyes, nausea, dizziness, vertigo, severe flu-like malaise. Mostly bedridden, symptoms fluctuate randomly.
Borrelia and babesia diagnosis 2008, no MCS, no OI, very little cognitive dysfunction. EBV positive for the first time a few months after taking LDN.
I posted a link to an article earlier in this thread which suggested that LDN was more effective with those with a high ESR. Mine is low, at 4.
Still waiting for XMRV home draw.
Did badly on LDN even though only got up to 1.5mg. Main problem was increase in pain.
Jenny
Now at my worst - bedridden for one year - all over severe pain, severe weakness (can only walk about 20 yards), chills, sweating, painful glands, stabbing pain behind eyes, nausea, dizziness, vertigo, severe flu-like malaise. Mostly bedridden, symptoms fluctuate randomly.
Borrelia and babesia diagnosis 2008, no MCS, no OI, very little cognitive dysfunction. EBV positive for the first time a few months after taking LDN.
I posted a link to an article earlier in this thread which suggested that LDN was more effective with those with a high ESR. Mine is low, at 4.
Still waiting for XMRV home draw.
Did badly on LDN even though only got up to 1.5mg. Main problem was increase in pain.
Jenny
Jenny, can you repost or PM me the link to that article? Thanks
Edit: found it here -- http://www.forums.aboutmecfs.org/showthread.php?379-Low-dose-Naltrexone&p=102325#post102325
Edit: found it here -- http://www.forums.aboutmecfs.org/showthread.php?379-Low-dose-Naltrexone&p=102325#post102325
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I had severe sudden onset- mononcucleosis- positive for EBV+HHV-6a- who knows what else- XMRV status unknown yet- I responded HORRIBLY to LDN. I went down to a tiny little dose of under 1mg and still felt like I was being poisoned, couldn't move hardly or think for 4+ hours after taking it. Messed up my sleep. Messed up my menstrual cycles badly. Made me irritable, Flu-ish feeling. I just felt like crap the whole time. Kept thinking it would get better, but it didn't. Oh well. Try and try again.