Low dose Naltrexone
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Alice,
I tried Imunovir but it gave me HORRENDOUS headaches. I ramped up quote fast and now know that was very stupid of me. I woudl like to revisit it at some point in the future but we thought we would give ldn a try first. Have you had any repeat blood work done by klimas re: NK cell function, cytokines, etc since you started imunovir or ldn? She wanted to retest me but I spoke with her a couple weeks ago and told her I was at .1mg and she sort of laughed - said we would have to see how low my dose was before deciding whether or not to retest. Personally I would like to retest anyway just to see if it is doing anything. Today I am slightly better. Rough morning pain wise/achiness/flu feelings but seem to have gotten better as the day goes on. But I overdid it outside w/ my daughter and now am starting to feel horrible again. Damn this heat!!!
I tried Imunovir but it gave me HORRENDOUS headaches. I ramped up quote fast and now know that was very stupid of me. I woudl like to revisit it at some point in the future but we thought we would give ldn a try first. Have you had any repeat blood work done by klimas re: NK cell function, cytokines, etc since you started imunovir or ldn? She wanted to retest me but I spoke with her a couple weeks ago and told her I was at .1mg and she sort of laughed - said we would have to see how low my dose was before deciding whether or not to retest. Personally I would like to retest anyway just to see if it is doing anything. Today I am slightly better. Rough morning pain wise/achiness/flu feelings but seem to have gotten better as the day goes on. But I overdid it outside w/ my daughter and now am starting to feel horrible again. Damn this heat!!!
i'm in toronto and it is stupid hot.i went and did some errands and couldn't wait to either get in the car,stores or home.i think this kind of heat is very hard on ebv/cfs/me sufferers.stay inside.i'm sure you were excited you felt better and wanted to feel productive.it's tough when all you want is to feel normal.
no i haven't been retested.i started all these klimas drugs in march(imunovir) then april for the ldn so we talked about doing blood work in the fall.if i lived closer she may want to do it now.i'll discuss it with her on my next phone consult.there's also dr.heslop who is doing clinical trials.she's in florida as well.
she's using rituximab which is used for lymphoma.a small trial in the netherlands showed 2 people with lymphoma and ebv had become well which included their ebv after being treated for the lymphoma.after a period of time the ebv came back so i think they were working on infusions every so many months.klimas knows about this trial as well.
a lot of people don't do well on any drugs.i did well on the imunovir for quite awhile as i said but the ldn seemed to amp up the meds.another topic for klimas..lol.
that poor woman has so much on her plate.
you see her soon right? if you don't mind would you post what she says to you.
i hope you feel better being inside and that tomorrow is an even better day for you.
al
no i haven't been retested.i started all these klimas drugs in march(imunovir) then april for the ldn so we talked about doing blood work in the fall.if i lived closer she may want to do it now.i'll discuss it with her on my next phone consult.there's also dr.heslop who is doing clinical trials.she's in florida as well.
she's using rituximab which is used for lymphoma.a small trial in the netherlands showed 2 people with lymphoma and ebv had become well which included their ebv after being treated for the lymphoma.after a period of time the ebv came back so i think they were working on infusions every so many months.klimas knows about this trial as well.
a lot of people don't do well on any drugs.i did well on the imunovir for quite awhile as i said but the ldn seemed to amp up the meds.another topic for klimas..lol.
that poor woman has so much on her plate.
you see her soon right? if you don't mind would you post what she says to you.
i hope you feel better being inside and that tomorrow is an even better day for you.
al
dsdmom,i read your other post where you're doing a candida cleanse as well.imho i think you're doing too much at once.i certainly understand it.
when you talk with klimas mention this to her.i'm very sensitive to most drugs,cleanses,just about everything like eveyone here.
i had to start one thing at a time until i adjusted to whatever it was i was taking.maybe this approach would work better for you as it did me.
best
al
when you talk with klimas mention this to her.i'm very sensitive to most drugs,cleanses,just about everything like eveyone here.
i had to start one thing at a time until i adjusted to whatever it was i was taking.maybe this approach would work better for you as it did me.
best
al
knackers323
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can anyone explain why ldn often needs to be incresed gradually? what is happening in the body that we cant handle a dose straight up but can often work up too it?
Hi Knackers, I'm not sure why you have to build up slowly. But i'm done with LDN - at least for now. Stopped over the weekend b/c my headaches were getting bad and I ended up vomiting. It also was causing some activation of the muscles in my head/neck/jaw - causing tmj issues and ear pain. I have NO IDEA how that happens but whatever it is doing to my body is activiating or inflaming those muscles. imunovir may do the same thing but my doc wants me to retry imunovir on a very low dose.
JanisB
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It blocks our endorphin receptors, stimulating the body to make more endorphins. The increased endorphins have a positive effect of immune function, just as being happy does, or being in love does.
JanisB
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Two months supply of LDN not planning to use
I seem to have stopped LDN just around the time I ordered a 2 months supply. My plan was to alternate 2 weeks on Stem Enhance with two weeks on LDN, after doing LDN only for about 8 months. Tried taking them together but they seemed to conflict.
Anyway, if someone wishes to buy the LDN from me (not yet opened), please send private email to me. Thanks
I seem to have stopped LDN just around the time I ordered a 2 months supply. My plan was to alternate 2 weeks on Stem Enhance with two weeks on LDN, after doing LDN only for about 8 months. Tried taking them together but they seemed to conflict.
Anyway, if someone wishes to buy the LDN from me (not yet opened), please send private email to me. Thanks
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hi people, firstly , just to introduce, i just joined, i found this through google
long story short, 4.5 years of m.e , tried most supplements, getting worse n worse, have tried ldn recently and want some help/input
i started at 1.0 , defo felt i was "on something" for the couple of hours after taking it ,but the next day would be fine
1 week later, 1.25, same thing, felt bit trippy when i took it, but no probs nothing coudnt handle and following day no knock on effect
5 days later 1.5 , slightly more woozy feeling for hours after taking it (took it at night) but next few days, felt real good ( i do put some of it down to dr teitlebaum vitamin drink fatigued to fantastic - i trialled it a month before , felt good and improved, stopped to test , felt worse, so started it again and ldn)
the vit drink and 1.5 ldn combined gave me enough energy to lift a 32 inch old big backed tv down from a wall unit on my own and carried 30 yards, cleaned my room, hoovered, moved 100 kg of weight disks from my store cupboard to storage under my bed, lifted chest of drawers etc....in one day i did more than probably 5 years combined, i cant walk more than 5-8 mins without problems and lifting anything remotley heavy has been impossible for years so i was so happy
i upped to 1.75 6 days later and felt woozy (same old ) for the hours after taking, but no major problem, BUT then the next day i had such a weird empty headed feeling , and weird traces of visions . this lasted well till now, (a week ago) and i then had massive increase in m.e symptoms, worst mind fog ive ever had , and glands swelled up , monday was my 27th birthday, and i spent it trying not to pass out , it made me feel so so low, having had such a good week before my birthday then had the massive downer of a full on m.e relapse with a vengance on my birthday lol safe to say for first time in the 5 years of this illness, i felt completley depressed by it
so i have now gone back to 1.5, still feel like shit, so now i have binned this months supply, i will recharge , rest up and try again in a few weeks
is 1.5 my limit, should i increase so slowly like .12n half every 2 weeks or something. i know many had probs with side effects but eventually crawled up to higher dose the 4's,4.5's etc and are now reaping benefits
just want some comforting stories of people who had what i just had , and give me some hope coz right now im at end of my patience with this bloody illness lol
soz for the rant , lookin forward to meetin and chattin to you all
long story short, 4.5 years of m.e , tried most supplements, getting worse n worse, have tried ldn recently and want some help/input
i started at 1.0 , defo felt i was "on something" for the couple of hours after taking it ,but the next day would be fine
1 week later, 1.25, same thing, felt bit trippy when i took it, but no probs nothing coudnt handle and following day no knock on effect
5 days later 1.5 , slightly more woozy feeling for hours after taking it (took it at night) but next few days, felt real good ( i do put some of it down to dr teitlebaum vitamin drink fatigued to fantastic - i trialled it a month before , felt good and improved, stopped to test , felt worse, so started it again and ldn)
the vit drink and 1.5 ldn combined gave me enough energy to lift a 32 inch old big backed tv down from a wall unit on my own and carried 30 yards, cleaned my room, hoovered, moved 100 kg of weight disks from my store cupboard to storage under my bed, lifted chest of drawers etc....in one day i did more than probably 5 years combined, i cant walk more than 5-8 mins without problems and lifting anything remotley heavy has been impossible for years so i was so happy
i upped to 1.75 6 days later and felt woozy (same old ) for the hours after taking, but no major problem, BUT then the next day i had such a weird empty headed feeling , and weird traces of visions . this lasted well till now, (a week ago) and i then had massive increase in m.e symptoms, worst mind fog ive ever had , and glands swelled up , monday was my 27th birthday, and i spent it trying not to pass out , it made me feel so so low, having had such a good week before my birthday then had the massive downer of a full on m.e relapse with a vengance on my birthday lol safe to say for first time in the 5 years of this illness, i felt completley depressed by it
so i have now gone back to 1.5, still feel like shit, so now i have binned this months supply, i will recharge , rest up and try again in a few weeks
is 1.5 my limit, should i increase so slowly like .12n half every 2 weeks or something. i know many had probs with side effects but eventually crawled up to higher dose the 4's,4.5's etc and are now reaping benefits
just want some comforting stories of people who had what i just had , and give me some hope coz right now im at end of my patience with this bloody illness lol
soz for the rant , lookin forward to meetin and chattin to you all
Welcome ex.fitness.instructor!
Sorry about the difficulty you're having with LDN. I don't have any answers really - I just decided it's really not for me. Which bums me out because I had such high hopes for it. But maybe 1.5 is your limit and you shoudl just stick with that. Definitely give your body a break and then try it again. Just be careful not to overdo it while you are feeling better - maybe that is also contributing to your feeling crappy now. Good luck!
Sorry about the difficulty you're having with LDN. I don't have any answers really - I just decided it's really not for me. Which bums me out because I had such high hopes for it. But maybe 1.5 is your limit and you shoudl just stick with that. Definitely give your body a break and then try it again. Just be careful not to overdo it while you are feeling better - maybe that is also contributing to your feeling crappy now. Good luck!
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so in what way did it not work for you hun? couldnt tolerate low dose? does my story sound familiar to anyone, that you seemed to be getting on ok with it and then all of a sudden it hit you hard?
i was hopeful of it too, but part of me thinks if we so sensitive to it in first place, surely its a sign we dont get on with and shouldnt take it?
will have a month off and try again
i was hopeful of it too, but part of me thinks if we so sensitive to it in first place, surely its a sign we dont get on with and shouldnt take it?
will have a month off and try again
I also after 9 months gave up LDN. I read a blog today HAART and IRIS, by Mindy Kitei http://www.cfscentral.com.
I wonder if we are experiencing IRIS on LDN?
I tried LDN for a long time and would have thought my immune system might catch on by then. I finally called it quits. But I had such high hopes!
What do you all think?
Lynn
knackers323
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Hi Janis, so does that mean the reason we have to go slow is that we need to get used to fighting off the new infections the immune system is finding?
Sushi
Moderation Resource Albuquerque
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Knackers,
That was my response. It took me 4 months to get up to 4.5 mg because each time I raised the dose the immune system found new things to deal with. I waited till each things settled down before moving up again. It is still good for me and I would not want to be without it.
Sushi
That was my response. It took me 4 months to get up to 4.5 mg because each time I raised the dose the immune system found new things to deal with. I waited till each things settled down before moving up again. It is still good for me and I would not want to be without it.
Sushi
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i think im gona try again,start maybe at 1.0 again- i did fine with that last time, maybe once im up to 1.5 (will up at the exact same rate i had benefits from last time) and then when get to 1.5 slow the progress right down
still something i dont understand, when people say wait until you dont feel any side effects to up the dose, do they mean the side effects you get within half hourish of taking it ? as in on the night side effects, or they mean next day side effects?
still something i dont understand, when people say wait until you dont feel any side effects to up the dose, do they mean the side effects you get within half hourish of taking it ? as in on the night side effects, or they mean next day side effects?
Just read this study again. It's very small-scale but the findings concur with anecdotal evidence of LDN helping FM patients. I think FM is a very heterogeneous condition (perhaps more so than ME) - there are likely to be many sub-groups, and LDN may help some types of FM and not other types. I find it particularly interesting that this study found that efficacy was correlated with ESR - those with high ESR were helped most. My ESR is less than 5 - this may explain to some extent why I got no benefit.
Might be an idea to get your ESR checked before starting on LDN.
Jenny
Pain Med. 2009 May-Jun;10(4):663-72. Epub 2009 Apr 22.
Fibromyalgia symptoms are reduced by low-dose naltrexone: a pilot study.
Younger J, Mackey S.
School of Medicine, Department of Anesthesia, Division of Pain Management, Stanford University, 780 Welch Road, Suite 208, Palo Alto, CA 94304-1573, USA. jarred.younger@stanford.edu This e-mail address is being protected from spambots. You need JavaScript enabled to view it
OBJECTIVE: Fibromyalgia is a chronic pain disorder that is characterized by diffuse musculoskeletal pain and sensitivity to mechanical stimulation. In this pilot clinical trial, we tested the effectiveness of low-dose naltrexone in treating the symptoms of fibromyalgia.
DESIGN: Participants completed a single-blind, crossover trial with the following time line: baseline (2 weeks), placebo (2 weeks), drug (8 weeks), and washout (2 weeks).
PATIENTS: Ten women meeting criteria for fibromyalgia and not taking an opioid medication.
INTERVENTIONS: Naltrexone, in addition to antagonizing opioid receptors on neurons, also inhibits microglia activity in the central nervous system. At low doses (4.5 mg), naltrexone may inhibit the activity of microglia and reverse central and peripheral inflammation.
OUTCOME MEASURES: Participants completed reports of symptom severity everyday, using a handheld computer. In addition, participants visited the lab every 2 weeks for tests of mechanical, heat, and cold pain sensitivity.
RESULTS: Low-dose naltrexone reduced fibromyalgia symptoms in the entire cohort, with a greater than 30% reduction of symptoms over placebo. In addition, laboratory visits showed that mechanical and heat pain thresholds were improved by the drug. Side effects (including insomnia and vivid dreams) were rare, and described as minor and transient. Baseline erythrocyte sedimentation rate predicted over 80% of the variance in drug response. Individuals with higher sedimentation rates (indicating general inflammatory processes) had the greatest reduction of symptoms in response to low-dose naltrexone.
CONCLUSIONS: We conclude that low-dose naltrexone may be an effective, highly tolerable, and inexpensive treatment for fibromyalgia.
http://www.ldnscience.org/interviews/118-the-use-of-low-dose-naltrexone-in-fibromy...
Might be an idea to get your ESR checked before starting on LDN.
Jenny
Pain Med. 2009 May-Jun;10(4):663-72. Epub 2009 Apr 22.
Fibromyalgia symptoms are reduced by low-dose naltrexone: a pilot study.
Younger J, Mackey S.
School of Medicine, Department of Anesthesia, Division of Pain Management, Stanford University, 780 Welch Road, Suite 208, Palo Alto, CA 94304-1573, USA. jarred.younger@stanford.edu This e-mail address is being protected from spambots. You need JavaScript enabled to view it
OBJECTIVE: Fibromyalgia is a chronic pain disorder that is characterized by diffuse musculoskeletal pain and sensitivity to mechanical stimulation. In this pilot clinical trial, we tested the effectiveness of low-dose naltrexone in treating the symptoms of fibromyalgia.
DESIGN: Participants completed a single-blind, crossover trial with the following time line: baseline (2 weeks), placebo (2 weeks), drug (8 weeks), and washout (2 weeks).
PATIENTS: Ten women meeting criteria for fibromyalgia and not taking an opioid medication.
INTERVENTIONS: Naltrexone, in addition to antagonizing opioid receptors on neurons, also inhibits microglia activity in the central nervous system. At low doses (4.5 mg), naltrexone may inhibit the activity of microglia and reverse central and peripheral inflammation.
OUTCOME MEASURES: Participants completed reports of symptom severity everyday, using a handheld computer. In addition, participants visited the lab every 2 weeks for tests of mechanical, heat, and cold pain sensitivity.
RESULTS: Low-dose naltrexone reduced fibromyalgia symptoms in the entire cohort, with a greater than 30% reduction of symptoms over placebo. In addition, laboratory visits showed that mechanical and heat pain thresholds were improved by the drug. Side effects (including insomnia and vivid dreams) were rare, and described as minor and transient. Baseline erythrocyte sedimentation rate predicted over 80% of the variance in drug response. Individuals with higher sedimentation rates (indicating general inflammatory processes) had the greatest reduction of symptoms in response to low-dose naltrexone.
CONCLUSIONS: We conclude that low-dose naltrexone may be an effective, highly tolerable, and inexpensive treatment for fibromyalgia.
http://www.ldnscience.org/interviews/118-the-use-of-low-dose-naltrexone-in-fibromy...
knackers323
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hi Sushi, thanks for your reply. so do you think the ldn is helping but just not strong enough to deal with a main underlying infection? or do you have another theory?
Sushi
Moderation Resource Albuquerque
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This is only guesswork, but I think LDN helps the immune system but we will need more to deal with XMRV--that is if it turns out that XMRV is a prime culprit.
Best,
Sushi
My simplistic take on LDN is (sorry if this has already been stated):
LDN is an immune modulator. So if your immune system is low it is raised, if it is high it is lowered. So once your immune system is being "normalised" it jumps into it's main job of dealing with invasions such as bugs and pain to heal the body.
So with us it has a huge backup to deal with therefore we feel more pain etc coming out as side effects of LDN, with the healing.
The general concensus is that this should last for a shortish period of time and as the immune system ticks off it's to-do list we feel less discomfort.
So it dependant on the backlog the immune system has to deal with and how you can cope with the reactivation of bugs and pains before they are dealt with.
This is my very unscientific way of explaining how I see the role of LDN!
From reading many support boards & articles this is my take which makes sense to me. But apologies if I'm off the mark.
I've now taken the VERY low dosing route of 0.5ml taken every 2-3 days which I can now cope with.
LDN is an immune modulator. So if your immune system is low it is raised, if it is high it is lowered. So once your immune system is being "normalised" it jumps into it's main job of dealing with invasions such as bugs and pain to heal the body.
So with us it has a huge backup to deal with therefore we feel more pain etc coming out as side effects of LDN, with the healing.
The general concensus is that this should last for a shortish period of time and as the immune system ticks off it's to-do list we feel less discomfort.
So it dependant on the backlog the immune system has to deal with and how you can cope with the reactivation of bugs and pains before they are dealt with.
This is my very unscientific way of explaining how I see the role of LDN!
From reading many support boards & articles this is my take which makes sense to me. But apologies if I'm off the mark.
I've now taken the VERY low dosing route of 0.5ml taken every 2-3 days which I can now cope with.
