LDN: new promising support treatment to CURE CFS??

[serg1942]

Hi all,

Like I’ve just written in other posts I am still having PC (computer, not phosphatidyl choline issues...Well, maybe both problems, so until I fix them (if possible!), I will be almost off the internet…

BUT, I wanted to open this first thread, as this is my third day on LDN (only 1.5 mg) and I am feeling very good sensations, mainly cognitively…I feel “more part of this world!”

I have decided to dare with it because a member of this group is having a very good results on it, and after reading the book “the promise of low dose naltrexone” I have become convinced of trying, because I needed something to reduce the excitotoxicity, for not to take as much clonazepam as I need…

Well, when my PC is alive again, I will summarize the rationale for taking LDN on CFS and will tell in detail how I am doing. SO far, this 3 days has been amazing, but for the side effect of insomnia, that think is usual and hope will clear up in a few weeks…

I would like very much to know the experiences of others on this therapy.

Saluditos a todos (little regards to everybody),
Sergio

[Sushi]

I have also started LDN--8 days now at 1.5 mg. I have had different responses from Sergio, but also positive. I notice that my muscles are stronger when I exercise and their recovery time is fast. I also have more mental energy, but not spectacularly so. I find I am taking on tasks that I usually avoid without resistance--good thing!

I have not had the insomnia problems that some do but find that I definitely need enough sleep to feel well--more so than when not taking LDN. I am hopeful but will take it slowly and report what happens here.

Susan

[Janis]

I have also started LDN, but have only 1 day on it so far, and I had a terrific night of sleep last night. However, I am complicating the 'experiment' by making another change at the same time. I am cutting down the Perque hydroxo B12 and taking more adenosyl and methyl B12. Consequently, if I have good results (or bad results) I won't know what in the H*@# is causing them.

I suppose I should stay with the old B12 protocol until I've been on LDN for a couple of weeks but I am IMPATIENT to see results.

[will_m]

janis,
i understand your impatience! so tedious having to introduce each supplement one at a time.

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sergio,
i would be really interested in your explanation of LDN. im quite unfamilar with it myself, other than a quick net search.

[Sushi]

Hi,

I raised my dose of LDN to 2 mg last night (after 16 days at 1.5 mg) and I actually feel good this morning! Unbelievable--awake and with energy. I'll stay at this dose till it seems to have stabilized and then raise it a tiny bit.

Sushi

[Janis]

Great news, Sushi. Way to go. I'm doing OK at 2.25 mg. Apparently my sleep is not being adversely affected. I slept until almost noon today (yikes!)
Janis

[Sushi]

Here is a very interesting article by Jaquelyn McCandless M.D., given to us by Rich Van Konynenburg via one of our members. Rich has said it is fine to post it here.

Hi,

I'm a member of the autism--LDN group, which is run by Dr. McCandless. She has a lot of experience with LDN, and here's summary she posted recently. While it applies to autism specifically, I think what she says has applicability to CFS as well. I note particularly that she comments on the effects of foods that can produce opioids in some people (soy, casein and gluten), and since you have had intolerances in the past to some of them, I think it would be important to be aware of this, in case you do experience a negative reaction to LDN.

SUMMARY UPDATE ON LDN: Naltrexone is an opioid antagonist, and 10-12 years ago researchers Reichelt in Norway and Shattock in the UK and others were proposing that the large peptides in wheat and milk (and also soy) were creating opioid-like substances in the brains of autistics. Studies were done then with naltrexone in hopes that this drug would offset the opioid effect of wheat and milk and children would not have to go on restrictive diets; varied and mostly disappointing results were achieved.

Naltrexone was and is still only made in 50mg tablets unless compounded otherwise; the only kids that seemed to be helped at this dose were the SIBs (self-inflicting behavior) kids, and not all of them. At that time, nothing was yet known about the immune effects of naltrexone (endorphins). When I first started practicing in 1996, I tried naltrexone on children at the 50mg
dosing, but either got negative or no perceptible responses and gave it up, as did many other autism doctors. NO ONE suffered any negative effects once the drug was withdrawn; naltrexone is a non-toxic medication BUT can create a withdrawal reaction if the person has opioids in their system. Benefits of a tiny dose of naltrexone for mood modulation and help to the immune system for autistics was not actually known prior to my work at the beginning of 2005 except for a few isolated studies in Italy and England that were not followed up. One reason for no further studies at that time was the terribly bitter taste of naltrexone and the non-compliance of children unable to swallow tablets/capsules given this medication, (we now have a very effective transdermal cream that solves this problem) as well as the lack of understanding then that has only accrued in the last decade on the vital importance of endorphins to immune functioning.

Another was that the cyclicity of endorphin release was not understood then so the children were not given the drug at bedtime so as to take advantage of the outrush of endorphins between 2-4 in the morning which acts as a stimulus to the immune system. This does not occur in large doses; full-dose naltrexone suppresses the immune system, whereas LDN supports/heightens immunity; the two doses operate in an entirely different way. This is why I am adamant about parents not raising the dose over 4.5mg, even if an uninformed doctor tells them to (except perhaps for SIB, and since we have found now that most of the SIB kids are suffering from gut pain they cannot describe, it is obvious that this must be treated first and not covered up).

I believe the PRIMARY REASON children (and of course adults too) have negative reactions to LDN is that they are experiencing an opioid blockage (withdrawal reaction) with the gluten, casein, and soy (and possibly corn too) in their systems. Parents who profess to having their children on restrictive diets and experience their kids having a bad reaction to LDN upon examination often discover a hidden source of these large peptides in their children's food intake. Not reading food labels carefully, not knowing the names in which food companies hide casein and gluten, friends giving them food from their lunches at school, loving relatives who refuse to believe "a little bit of ice cream (or cookies, or cake, etc etc) won't hurt", or just being careless with the diet and allowing infractions are some of the things parents have discovered when I tell them this. AND, many parents are just not willing or able to go the mile for the dietary restriction that most helps these kids begin their path to recovery. AGAIN, I must repeat that if a child has a bad reaction to LDN more than some hyperactivity or insomnia for just a few days, it is very important to assume that this child is extremely sensitive to casein and gluten and to try to get it out of their diet if you really want your child to start recovering maximally from autism.

Parents need to realize also that until gut healing occurs (in which case there will be no negative reaction to naltrexone), the large peptides are keeping their children's guts in an inflamed state making proper food absorption impossible and encouraging the invasion of gut bacteria and fungi. I now use the negative reaction to LDN as an important tip-off to the presence of this gut inflammation and the need to address all aspects of their diet. I believe that parents whose children have a sustained negative reaction to LDN and are unable or unwilling to correct the diet should forego use of LDN. Parents whose children have a negative reaction should always make sure the pharmacist has used a fast-absorbing hypoallergenic medium (emu oil is excellent) to carry LDN into the skin.

Maximal immune benefits from LDN usually take a few months; socialization and cognitive benefits can occur within a few days to several weeks if poor dietary control does not interfere. Recognition of a connection between opiate receptors such as naltrexone and redox has instigated current research being conducted by Dr. Richard Deth (with help by a grant from ARI) on the hypothesis that LDN may be serving to upregulate cysteine and therefore bring more glutathione to neurons. This basic lab research stands to help enlarge our understanding behind benefit being seen in so many different illnesses in those taking LDN for immune enhancement, including crohn's, cancer, fibromyalgia, multiple sclerosis, and many other auto-immune conditions.

See autism_LDN yahoo group, http://www.lowdosenaltrexone.org andwww.LDNAfricaAIDS.org for more information.

-- Jaquelyn McCandless MD

Note from Rich: When Dr. McCandless talks about "reacting negatively," she is referring to autistic kids, so the manifestions would be different in adults with CFS. In the kids, they do things like more "stimming," which means repetitive types of behavior characteristic of autistics. It is thought that they do this to stimulate themselves, hence the name. They can also have difficulty sleeping. Another thing is that the LDN stimulates the immune system, so there can be die-off types of symptoms, or the person can get more colds. I think Dr. McCandless says that these things should be temporary, and should go away after a short time. If they don't, then that's what she calls a negative reaction.

Best regards,
Rich

[Janis]

I understand from reading this very informative post that is is best to take LDN in the evening before bedtime.

Is this what others are doing?

I've been taking it in the morning, but this morning I had to run off and could not find the right measuring spoon. I took it when I came home, about 3:30, and then commenced to eat a salad which had a little hard-boiled egg and guacamole in with the lettuce and other vegetables. I took my lunch pills, which include a betaine HCl and went to lie down. Now I feel terribly nauseous and think there is a connection.

Any one else experience nauseau? (My dose is 2.25 mg) I also want to know, is it okay to skip a day's dose once in a while?

Janis

[Sushi]

Yes Janis,

Most docs and researchers recommend taking it at bedtime--I think a few have said to take it anytime, but I think that was for people who got severe insomnia. Most say bedtime. That is what I have been doing. I also eat a small easily digestible snack so that it doesn't land in an empty stomach. I read that somewhere, but don't know if it is gospel.

I haven't felt nauseous, but have had slightly less appetite. I don't know about skipping a dose but if it has a cumulative effect over a couple months, I'd guess that it is best to take it continuously. Again, not gospel.

Sushi

[serg1942]

Hola Janis,

As far as I know, there's no problem in skipping LDN. The only downside is that it stops working early when stopped, and starts working just after continuing. But it is recommendable to take it continuously, unless you have a big reason to leave it for a while, like, for instance, the flue I have and still I'm passing [Just don't want to stimulate in excess my immune system!] It's effects are thought to manifest in the middle term, so it is better to take it continuously.

OH!, I also take a snack before going to bed, in order to take LDN with a bit of food in the stomach…I know one woman with CFS/MQS who had nausea with LDN, but also pain in the liver, and have had to stop it. I suspect she's intolerant to naltrexone because of her MQS, as one can be to whatever substance in very tiny doses, even food...

Hola Will,

Sorry I have not answered a few questions to you, because of my flu…I wrote a long paper on LDN in spanish that Susan, Rivka and me are going to translate, so in a few days I hope we can post it.

Anyway, I DO recommend you to read the book: “the promises of low dose naltrexone theraphy” it is sold at amazon. In spain people don't use to manage with english, so this is because I summarized the book. But I think it is better to read it, given that you will understand it! . It is very technical, but worthwhile.

Un abrazo,
Sergio