Low dose Naltrexone

[jenbooks]

Thanks Sushi

Can you, whenever you get a chance, let me know what improved on Rich's protocol and what improved on LDN? What does "Wow I feel good" mean specifically?

I like your approach--you seem to have gone the slow steady route.

 

[Sushi]

Hi Jenbooks,

Of course it is always hard to pin down what caused what, but here is a general run-down--filtered through horrible memory!

Methylation therapy seems to have helped with OI, fatigue, stamina, excitotoxicity, (i.e. cortisol curves), brain fog (still a problem but less so) and of course getting my detox system going again. (i.e. sweating!) Also, my CBC's have normalized--no more macrocytic anemia (See the Mark Hyman article I posted on the methylation thread). Also my homocysteine went from high to normal.

LDN does a bunch of things. I am in the process of writing an article on it with another member of this forum who is taking it.

Here is what I have noticed: by "feel good!" I mean I wake up with no symtoms I can recognize, no pain, have more energy (think "Gee, maybe I'll clean the condo today.") and a good mood. Research shows that it tricks the body into producing a lot more endorphins which in turn trigger modulation of the immune system. I also have more physical stamina for exercise and am actually able to exercise for 2 days in a row.

My temperature seems to be normal--no more cold hands and feet.

Each time I've raised the dose--and I am creeping up much more slowly than most--I have noticed these effects for a few days, then my immune system (which has been severely hypoactive) attacks something--usually for me low grade sinus and ear infections that have been there for years--and I feel like crap until that stage of the clean-up job is done.

My hope (and some others have reported) that eventually when I get up to the targeted dose, the immune system will clean up all the back-log and the "feel-normal" effects will become more stable.

Another biggie with LDN that I have experienced and most others report is that after a couple of days of restless sleep each time the dose is raised, I sleep much better in the coming days. For me, this has allowed me to reduce sleep meds .

One effect (that is going away) is a brief return of hot flashes (I am post menopausal). There is a known relationship between opiate receptors and the neuroendocrine system. Because naltrexone blocks the opiate receptors for about 4 hours after taking it, I think this blinking on and off of endorphins can confuse the neuroendocrine system till it gets it figured out.

Others I know who are taking it have reported similar immune responses. One person actually got a fever when exposed to the flu after years of subnormal temperature.

That is what I can think of at the moment. Again, there doesn't seem to be any one total solution for us, but I am trying to gently fix the stuff I know is "broke," and hoping that this will allow the body to do more self-healing.

Sushi

 

[jenbooks]

That's exciting. What I like about the approach is it utilizes the body's own systems just gently tweaking them. That's the kind of approach I need. I'm sorry I couldn't start Dr. Yasko's problem in the new year of 2007. I was planning to and then did that brief experiment with salt/c for 4 days that completely derailed me to where I am only *now* about to hopefully experiment with Rich's hydroxy and actifolate and folapro and then maybe at some point like you, if I can handle detox etc (and handle the fillers) can try LDN...who knows.

Thanks again.

 

[Sushi]

Ldn & hiv

Here is another interesting connection that hit me as soon as I woke up this morning. Low dose naltrexone (which I am taking) has been shown in studies in Africa to stop the HIV virus from turning into AIDS. It has also stopped the progression of immune damage in patients who already have AIDS.

http://www.ldnafricaaids.org/?page_id=4

"The safety as well as potential efficacy of LDN in preventing AIDS was discovered by Bernard Bihari, M.D., a Harvard-trained New York physician, in 1985. Since that time Dr. Bihari has treated more than 350 patients, 94% of whom have remained HIV positive without progression into AIDS for up to 18 or more years so far. Many of these individuals received only LDN and some used LDN as an auxiliary to the evolving HAART drugs....

" Dr. Bihari, Dr. Abdel Kader Traore` (and other health officials at the University Hospital in Bamako in Bamako, Mali), and more recently Dr. Jaquelyn McCandless, have created a protocol for a controlled, non-placebo study involving 250 adult volunteers, all of whom are HIV positive but have not yet developed any AIDS symptoms. The protocol will test efficacy of LDN alone compared to the current HAART medications as well as the combination of the two. The Malian government is fully supportive of this study and will provide the HAART medications needed."

Dr. Jaquelyn McCandless has used LDN extensively to treat autistic children --with good results. She has a Yahoo Groups forum on autism and LDN.

One of its mechanisms in the immune system (it has many) is to shift the balance from Th2 dominance to Th1 dominance.

I have felt much better on this medication and while I don't know which of its many effects is helping, this possibility is quite interesting. Perhaps if it is effective against HIV it could possibly be effective against XMRV?

It is also interesting to me that my ex-husband has prostate cancer...hmmm.

This is another one to watch.

Sushi

 

[lostinthedesert]

I will be trying this soon if I can tolerate it at all. Has everyone started at 1.5mg? Anyone needed to start lower? I am always very careful because I am so reactive and tend to crash pretty easily.

Thanks,
S

 

[SaraM]

lostinthedesert,

The smallest dose of LDN makes me more sleepy and brain fogged the next day.So, it is not for me.

 

[*GG*]

SaraM

What is the smallest dose?

I think it can be made into a very low dose. I started off at 1.5mg and it did have big effects for a few weeks like like brain fog, feeling down, fatigue and headaches.

I am now up to 3.0 mg with very few side effects, probably still maybe some disturbed sleep, have not sleep well in years, so not really sure if it is the LDN. I do recall dreaming now, which when I think of it is rather rare!

 

[Sushi]

LDN dosing

You can get it compounded in any dose. Or some dissolve the generic 50 mg tablet in distilled water and take the dose they need and keep the rest in the fridge in a brown glass bottle.

ggingues, did you get a NON-time release capsule and take it after 10 pm at night? It will make you feel lousy for a few hours after taking it as it blocks the opiate receptors. That is one reason they say to take it at night--you sleep through it! The other is that some of the researchers say that the body naturally makes its endorphins (natural opiates) in the wee morning hours and you want to have the opiate receptors blocked during that time so that the body gets confused into making more endorphins, which in turn modulate the immune system. Once the receptors are released all those endorphins get to work. Well, that isn't great science-writing, but I think that is the basic idea.

I started with a 1.5 mg compounded dose. Some people start as low as .5 mg. I am moving up the dose very slowly and after about 9 weeks I am taking 3.5 mg. I usually have slightly disturbed sleep for one or two nights after raising the dose, then after that I sleep much better than I used to. I hope to get up to the top recommended dose of 4.5 mg within a few weeks.

It has helped me a great deal in many areas of functioning.

Sushi

 

[SaraM]

low dose

I started with 1 mg which helped me get rid of my awful muscle pain for just one week. Then the pain came back. I upped the dose with no success. Later I lowered the dose. Still there was no change.I wanted to sleep all the time while on LDN. I tried it for a couple of weeks. So, I think I gave it enough time to work.

 

[*GG*]

SaraM

You could try lower than 0.5mg.

There is now a group on Yahoo for very low LDN. FYI. I see that some people do 0.1 mg. And I have read that some people stay at a dose for a month before increasing. We are all different.

Some of this could also depend on how long you have been sick, takes a while before your health could get better.

Just trying to give you some ideas.

 

[*GG*]

SaraM

Meant 1.0mg, confused you with earlier post.

 

[Marylib]

Like to hear from people actually getting better on LDN?

Hi all,

Having a hard time with LDN and a hard time on the yahoo group LND for CFS.

As far as the yahoo group goes, seems lots of folks posting there have not actually been diagnosed with ME/CFS, (even on the list specifically for CFS) but are using it for other disorders with some similar symptoms.

I am pretty brain fogged, so to make it simple, I would like to hear from anyone who has had sleep disruption as an ongoing part of his/her ME/CFS who is having success with LDN??

Seems that those in the "bad sleep" subset of ME/CFS who try LDN may just not be able to tolerate it? For me, the LDN (from .5 up to 1.5) made me sleepy at first -- which was good when taken at night. Then it started making me wired at night (leading to nasty relapse -- ugh.) and I do not have the nerve to try it again in the daytime, as I can't take more trouble, if you know what I mean.

Maybe LDN is better for those of us who have FM without the ME/CFS than those of us who have both?

Many thanks for your thoughts
Marylib

 

[Min]

I've just started it, initially on 1mg but have had to halve the dose.

I'm in such incredible pain 24 hours a day on it that I don't know where to put myself. The only pain killers that work for me contain opiates so I can't take them with LDN.


I don't know whether to halve the dose again or give up.

 

[*GG*]

To Marylib and Min

Marylib,

I have CFS and Fibro, haven't slept well in ages and the LDN seems to be interfering with that. When I don't sleep at night, I might skip the following night and I have been trying daytime dosing lately and that seems alright.

Min,

I started LDN while in the middle of a flare up. My dr prescribed 1.5 mg and he told me to stop for a few days when the Insomnia did not get anybetter. I am now up to 3mg.

I just found out from 1 of my Drs that chronic pain left unchecked leads to burning pain. I did not know this, I had stopped doing OTC pain meds and thought the anti-depressants were enough. I did take a few heavy duty pills before the LDN when the pain was really bad!

Had another sleep study done on Tuesday night and the results are at 1 of my other drs now and I am interested in what he will have to say.

 

[Sushi]

sleep & LDN

Hi,

I have been off the computer for a week doing Dr. Lee Cowden's laser energetic detox--no electromagnetic radiation allowed!

So, I just saw the LDN and sleep posts now. Seems it is very much an individual response. I have been taking it for about 2 1/2 months and have moved my dose up very slowly. I am now at 4 mg.

I have had decades of chronic sleep problems and (my diagnosis is ME/CFS, not fibro), so I was concerned when starting LDN. Initially sleep was more difficult for about 5 days, then it became easier than before starting. (started at 1.5 mg) Each time I raise the dose (in .5 mg increments) I have disturbed sleep for a couple of days, then sleep better than I have in many years. I have been able to reduce sleep meds considerably.

So, though response is very individual it might be worth sticking with it for a while to see if sleep gets better. Another friend raised the dose too fast and was totally wired. Stopped for a few days and went to a lower dose and now also finds sleep is better.

Sushi

 

[InvertedTree]

Glad to see this thread

I started LDN on Friday night. I took 3ml at about 9:30 and was up all night.

Yesterday I took the 3ml at about 4 and had an easier time sleeping.

I'm trying to figure out whether or not to reduce the dose and then gradually move up to 3ml.

I seem to have developed an infection around an ingrown toenail last night. I'll have to see a podiatrist tomorrow. I may have to have part of the toenail removed.

Friday I was in the midst of a crash and wondered whether or not to start it while in a crash. The LDN seems to have stopped the crash in its tracks so I'm feeling hopeful about this. I already have noticed a difference in just two days (or maybe its the placebo effect).

I'm wondering how long the LDN has to be out of one's system before taking a vicoden? I might need to take one tomorrow if the podiatrist does the minor toenail surgery.

Great thread-

 

[Sushi]

Terri,

Do you mean 3mg when you say 3 ml? If so, that is a pretty high dose to start with--others who have tried to start there also got pretty wired. Personally, I'd back off and lower the dose--not sleeping is hell. Also, I found that immune responses were provoked by LDN (infected toenail?) and 3 mg gave one person a fever of 104 when exposed to a bug.

If vicoden works through the opiate receptors, it might not work if you have any LDN in your system. Check it.

Best wishes with this,
Sushi

 

[InvertedTree]

Sushi-

I forgot to mention that I have the LDN in liquid form but I did start at a dose equivalent to 3mg.

After doing some reading this afternoon I agree with you that starting at that dose is too high.

Not sleeping is bad. Today I haven't been feeling well at all.

I was wondering if the toe infection was part of the immune response. It had been kind of smouldering all summer but now seems to be in full force.

The same thing happened to me when I started the simplified methylation protocol about 15 months ago. I got a staph infection from an ingrown toenail.

I've been feeling a little wired and anxious so tomorrow I'm only going to take 1mg and work my way up to 3.

I appreciate your help and thoughts.

Terri

 

[andreamarie]

Someone asked why more people aren't taking it? I can't find anyone in the Boston area to prescribe it. The docs I spoke to want some decent literature, not anecdotal stuff on it. One did a search and was not satisfied with what he found.

 

[Sushi]

educating docs re: LDN

Hi Andreamarie,

There is pretty good info at http://lowdosenaltrexone.org/ . They try to keep the studies updated. There is also a book to with a lot of research in it--I think it is cited on that website. I have found some blogs by M.D.'s that were helpful too.

I went into my doc with a whole lot of studies printed out from the web, thinking I'd have to sell it to her, but she was already clued in and had prescribed it for another patient, so she was happy to give me a prescription.

If you look for a doctor that is integrative, functional medicine, or anything like that, they are more likely to know about it. Another way is to call a good compounding pharmacy in your area and ask what doctors are prescribing it. Most the the pharmacies I called when I was shopping for a pharmacy had many, many doctors prescribing it, so it is known in the "underground" medical world.

Personally, it has helped me immensely. But, of course, it doesn't help everyone. I am also viewing it as a good interim approach until more is known about XMRV and the specific treatments to throw at it.

Sushi