Low dose Naltrexone

[froufox]

Thnx cfs since 1998, I do take probiotics all the time but it hasnt made any difference, or at least it didnt prevent it from happening. It might be worth me trying a higher dose though to see if that helps. Strange that the LDN has had that effect on me tho...maybe it will just be a case of my body getting used to it. Glad the probiotics helped you. Just out of interest which brand do you take, and what dose?

 

[cfs since 1998]

Thnx cfs since 1998, I do take probiotics all the time but it hasnt made any difference, or at least it didnt prevent it from happening. It might be worth me trying a higher dose though to see if that helps. Strange that the LDN has had that effect on me tho...maybe it will just be a case of my body getting used to it. Glad the probiotics helped you. Just out of interest which brand do you take, and what dose?

Sorry to hear that. I take NOW "8 billion acidophilus and bifidus", which I get from a health food store that keeps them refrigerated. I take two capsules at a time.

 

[Sushi]

I've been on it for about 2 weeks now, and went through quite a severe detox flu/cold which I think the LDN might have partly triggered....
I know the LDN is helping though as I've got more energy. I've been on 1ml/1mg and increased to 2mls/2mg last night.

Thanks.

Hi Froufox,

When I first started LDN, and every time I raised the dose, I got an immune response--my immune system went after old infections and messes, so I'd feel crummy for a while. When I got up to about 4 mg, this stopped happening and I have been at 4.5 for a few months now and it helps me a lot.

One of the first things I noticed was more energy. As far as weight, mine didn't change, but anything is possible. Another friend who has been taking it for about 5 months had lost a lot of weight and muscle with CFS. Now they have gained back about 10 kg a lot of which is muscle. This person is also now able to go to the gym and do anaerobic exercise for the first time in years.

I'd say, keep at it, unless the problems become too difficult.

Best wishes,
Sushi

 

[froufox]

Thanx cfs since 1998, I take Klaire Labs which is 100 billion per 1/4 tspn which is a very high dose but I guess its whether they actually implant or not but I do think they help somewhat.

Thanks Sushi, thats really interesting about your friend and its very encouraging to me that they gained a lot of their weight back after initially losing some. I hope the same happens with me! Are they still taking the LDN?

Ive had exactly the same immune response as you, I had a huge awakening of my immune system recently. I'm still producing lots and lots of mucous (sorry for the graphic details!!) for about 10 days now, its been the strongest flu/cold that Ive had for about 6 yrs and even then it wasnt as bad this...very rarely do I get colds since being ill so I am very encouraged by this recent reaction...just annoying about the weight loss!! grrrrrrr

I was taking olive leaf too so dont think that it was just the LDN but anyway my immune system has really been ramped up. Thats interesting that you stopped having that effect at a higher dose, sounds like the LDN has helped your body deal with a lot stuff. I definitely have more energy too like you which is what normally happens with me when I have an immune response. I agree with you I'm gonna keep at it! Thanks.

 

[Sushi]

Thanks Sushi, thats really interesting about your friend and its very encouraging to me that they gained a lot of their weight back after initially losing some. I hope the same happens with me! Are they still taking the LDN?

Ive had exactly the same immune response as you, I had a huge awakening of my immune system recently....sounds like the LDN has helped your body deal with a lot stuff. I definitely have more energy too like you which is what normally happens with me when I have an immune response. I agree with you I'm gonna keep at it! Thanks.

Hi again Froufox,

Yes, my friend is still taking LDN and is sure that it is LDN that has moved them from being nearly totally housebound to being able to drive and go out and do things a few times a week--this is after 5 years stuck at home! This friend went up on the dose too fast and spiked a high enough fever to go to the emergency room! Huge immune response. Also hadn't had colds or flu in years.

I figure I had less of this on higher doses simply cause my immune system had cleared out a lot of debris.
And for me, it has helped me in lots of ways--one big thing is to be able to stop taking prescription sleep meds--after years!

Sushi

 

[froufox]

Thanks again Sushi. Wow thats great about your friend I assume they have CFS? It must have been very scary for them having to go to ER! Our reactions are all very interesting and I wish that I had tried LDN much sooner now but I've been concentrating on other treatments over the pst yr or so and didnt want to try too many things at once as it gets confusing so I put it on the back burner.

That makese sense regarding your own experience and great about the sleep improvement too!! I am definitely sleeping better too since being on LDN although initially my sleep was slightly interruped and I had some nightmares but not since.

 

[garcia]

When I first took LDN I lost a lot of weight. In fact the weight loss was pretty much uncontrollable and got to the point where even sitting down was uncomfortable. I had a flat washboard stomach (unusual for me). And my stools volume increased dramatically. For whatever reason the LDN was causing me not to digest/absorb food.

I stopped taking LDN and only went back to it over a year later at a lower dose and intermittently. If I hadn't stopped I believe I would have carried on dropping weight to a dangerously low level.

One of the things LDN does is lower TH17. Now TH17 is important for gut immunity.

It's my hypothesis that in those of us with major yeast/dysbiosis issues the LDN causes malabsorption. My advice would be to stop the LDN for a few weeks (you have nothing to lose) until your weight has come back up to normal.

If the LDN is causing your weight loss (as I very strongly suspect), and you carry on taking it, you will carry on losing weight to potentially dangerous levels.

LDN is a powerful tool. But if its causing you major side effects then I would at least take a break until those side effects have diminished.

 

[froufox]

Thanks for reminding me of the TH17 connection garcia, I had completely forgot about that!! Duh! I think it is very plausible too, and it does make sense from what I have read about th17, and because I have candida too as you know. You wouldnt think such a low dose would have that effect but it obviously does.

For anyone who is interested here is some more info about TH17 which explains more.. here is a quote..

More specifically, they [th17 cells] are thought to play a role in inflammation and tissue injury in these conditions.[3] Th17 cells can cause severe autoimmune diseases, however they serve a very important function in anti-microbial immunity at epithelial / mucosal barriers. They produce cytokines (such as interleukin 22) which stimulates epithelial cells to produce anti-microbial proteins to clear out certain types of microbe (such as Candida and Staphylococcus). Thus, a severe lack of Th17 cells may leave the host susceptible to opportunistic infections.

Also here is a graph that shows the actions of LDN one of which is the downregulation of th17..

http://www.cpnhelp.org/copy_ldn_action_chart_a_v

Anyway I'm going to stay on it for now but have backed down to 1.5mls/mgs and will see how things go.

 

[spindrift]

A good video on LDN. If you don't want to watch the whole
video, LDN is @ 0:42:40 - 0:50:24

http://www.youtube.com/watch?v=jtc2JARVpPw

 

[Cort]

A page on low dose naltrexone is now up on Phoenix Rising

 

[oerganix]

Anyone know whether the taboo on narcotic pain relievers and alcohol applies to LOW DOSE naltrexone, as it does to the high dose used for addictions?

 

[Sushi]

Anyone know whether the taboo on narcotic pain relievers and alcohol applies to LOW DOSE naltrexone, as it does to the high dose used for addictions?

I don't think that the alcohol ban applies for LDN, but I can't tolerate the stuff and have never tried it while on LDN. Apparently you can take low doses of some narcotic pain relievers without problems. The experts in this area are the pharmacists at Skip's Pharmacy in Boca Raton. You can google their website. They are happy to answer questions.

Sushi

 

[Snowcat]

Because naltrexone blocks certain opiate receptors, my understanding is that narcotics taken while under its influence will be ineffective. I read somewhere that there is concern about people being more likely to overdose because of this - since it won't work, people might take more and put themselves in danger. High dose naltrexone blocks the receptors continuously, but LDN only for a few hours. My pharmacy sheet says not to take LDN with pain medication that acts on the opiate mu receptor, but my doctor said I could take a pain killer if I needed to provided it was at LEAST six hours before or after my LDN dose. I don't know if there's any data to support this one way or the other, or discussion of how long LDN lasts in various people, which would be helpful to know. But it would be interesting to hear what Skip's Pharmacy has to say about the issue.

 

[Samuel]

LDN basic questions

Hi LDNers, here are some pretty basic questions I hope
somebody can answer. I lost concentration when I tried to
read the whole thread, but I did read a lot of it, and a lot
of ldninfo.org.

1) Has anybody with severe ME as defined by Canadian 2003
or Lyme tried it for a long time, such as a year?
2) Is this likely to be good or bad for people with
serious hyperalgesia? Will it increase or decrease
long-term sensitivity to opioids?
3) When you stop LDN, do you remain better?

4) Is the immune improvement good for bacterial and mold
infections? One site said that it would not work if
you have candida.
5) Could it be bad for you? For example, does not having
opioid stimulation during the night cause any problems
because the body wanted those for something?
6) Could it increase retroviral replication by causing
cell division e.g. in immune system (NK, T, or B)
cells?

7) Can it make you want to do more than you should the way
stimulants can? I have repetitive strain injury
including nerve damage as measured by conductivity
testing. Could it cause more nerve damage by reducing
that pain (which gets worse the more I do and requires
a lot of recovery) and causing me to do more?
8) How exactly does it affect the immune system?
9) Will you be marked as suspect in the USA if you use it,
for whatever reason, such as because addicts use it,
because it sounds vaguely like opioids, because it's
unusual, or because it's cheap and effective?

Thanks.

ETA: What does Judy say about LDN?

 

[Sushi]

Hi Samuel,

I can answer some of this but not all:

I don't think many people in this patient community have been taking it for as much as a year. They say the peak effect is usually reached after several months at whatever your optimum dose is. I have taken it for 6 months and I know a couple of others who have taken it for a few months more. The effect doesn't wear off. Several of these patients were in the "severely incapacitated" group and I know some who have gained a lot of functionality with just LDN.

I have read that you need to keep taking it, however, for continued effect. I don't know if studies have been done though.

It should not increase or decrease long-term sensitivity to opiates. The effect (at low dose) only lasts a few hours.

Some people who have taken it during the day due to problems with insomnia, have found that they felt a bit crappy with the receptors blocked. That is one of the reasons to take it at night. I don't believe this is damaging, just uncomfortable for some.

That's the part of your post that I have some knowledge about.

Best wishes if you try it.

Sushi

LDN is an immune modulator rather than a booster. It is supposed to increase NK cells. It is also supposed to shift the immune system from Th2 dominance to Th1 dominance--which would allow the body to better fight a retrovirus.

It is in no way a stimulant so that there is not the danger of overdoing. It does seem to increase the body's stamina though--but not through stimulation.

 

[Samuel]

Thanks, Sushi!

My replies are after ***.

It should not increase or decrease long-term sensitivity to opiates. The effect (at low dose) only lasts a few hours.

***This is one of my biggest concerns. I will need surgery.

LDN is an immune modulator rather than a booster. It is supposed to increase NK cells. It is also supposed to shift the immune system from Th2 dominance to Th1 dominance--which would allow the body to better fight a retrovirus.

***When the NK cells divide, do they replicate any retrovirus in them?

It is in no way a stimulant so that there is not the danger of overdoing. It does seem to increase the body's stamina though--but not through stimulation.

***What I was getting at is if it makes you feel less pain only, or reduce inflammation thus possibly preventing nerve damage also.

 

[cfs since 1998]

***This is one of my biggest concerns. I will need surgery.

***When the NK cells divide, do they replicate any retrovirus in them?

***What I was getting at is if it makes you feel less pain only, or reduce inflammation thus possibly preventing nerve damage also.

Definitely tell your doctor about anything you are taking before surgery.

NK cells come from immature lymphoblast cells, they don't divide like a bacteria would. But it isn't just supposed to increase NK cells but also their cytotoxicity (killing ability). Also we keep hearing XMRV is present in low numbers, not that many cells are infected. So I don't think it is the case where, as soon as you make a new NK cell, it becomes infected too.

I am not sure about the last question, but LDN probably does both.

 

[Samuel]

Hi cfs,

It is not a matter of telling the surgeon so that he knows. It is a matter of morphine at doses high enough to stop involuntary breathing and high enough to make urination impossible do not make a dent in the pain. If LDN could make that worse, it would be bad; if it makes that type of thing better, that would be good.

Thanks for your other comments. Very good to know.

===

I still wonder if my concern about having LDN on the record is warranted.

 

[LaurelB]

Hi, all,

I apologize in advance for asking some q's that I'm sure have already been asked and addressed. This thread is so long and I can only read a couple posts per day at best, so I can't really search the threads to find the answers I'm looking for.

Anyway, I keep trying to start LDN (1.5mg) but it seems to disrupt my sleep. I have severe ME/CFS, so when I don't sleep, I am rendered completely non functional. . So I take it for a week or so, then have to stop to catch up on sleep.

My questions are:

1. Can this be taken in the morning to reduce the effect on sleep? I know it works better at night, but I wonder if it's still effective if taken in the morning.
2. How long before one knows if the LDN is helping? Is it an instant type of effect (ie, would I have noticed any benefit by now even by stopping and starting), or does it take months to notice a difference?
3. I also wonder how soon one can build up the dose once sleep is under control?

Thanks for any help.

Laurel

 

[Sushi]

Hi Laurel,

Good to see you!

Everyone seems to respond differently to LDN. The main reason to take it at night is to avoid being awake during the few hours when your opiate receptors are blocked--some people feel kinda down during this period.

The other reason (which is not agreed upon by researchers OR patients, is that apparently the body produces the most endorphins around 2 or 3 am and if your opiate receptors are blocked then, the body will produce more to try to "fix" the problem. More endorphins translates to LDN being more efficacious.

That said, many patients take it during the day successfully and don't experience any problems. I take it at night but at the beginning and every time I raised my dose, I had to take more sleep aids for a few days to counteract the LDN induced insomnia. Now, after being up to 4.5 mg for a good while, it actually helps my sleep.

As to how fast people get response--again individual. Some find they have to "hit" a certain dose before they get a good response, some respond immediately. Also the effect builds up over several months. For me I noticed a difference in energy and immune function immediately, but when I reached 3.5 mg there was a sudden really noticeable improvement.

I raised the dose very, very slowly and it took me about 4 months to reach 4.5 mg. I waited till I didn't notice any more changes at the dose I was on, then waited a few days more, and raised the dose.

I hope you find help with this. Experiment with the time to take it, the doses etc. I would just caution raising the dose quickly as some have had extreme immune responses to "old bugs" and spiked a high fever.

Best,
Sushi