Low dose Naltrexone

[Gazelle]

?? for Sushi

Sushi, I am new to the forums, but not new to CFIDS (18 years and counting). I am reasonably functional on some days with the help of a great physician, but sleep problems have modulated my illness for years. I have been on a litany of drug combinations and have rarely succeeded in getting continuous, deep sleep. I recently started LDN at 1 mg, moved up to 2mg after about ten days, and will probably move to 3 mg in about a week. My insomnia has never been any worse than usual, but when I first started the LDN, I tended to have a solid block of sleep from about 12:00 am to 4:00 am, always waking up right at 4 or shortly thereafter, unable to fall back asleep. That is getting better, though I've been unable to wean my other sleep meds.

My questions for you are twofold. How long did it take you to be stable at your highest dose and wean your other meds? Also, I noticed you are taking GcMAF. So much is yet unknown about LDN's effects on the immune system - it's been represented as an immune-stimulator, an immune-repressor, and an immuno-modulator, depending omn the source. Are you at all concerned that it may be interfering with your GcMAF, which upregulates the macrophages? Lastly, do you drink coffee? That's my one and only vice, and I can't see giving it up, but I would if I absolutely knew it was inhibiting sleep or drug metabolism. I don't generally drink it after 9:00 am in any event. Thanks for any suggestions.

Gazelle

 

[juniemarie]

Sara
It helps my digestion also. I have added sauerkraut and hope to start making kefir both add probiotics. Also I take lemon juice daily and have started low oxalate diet. The sauerkraut really help lots.

 

[juniemarie]

Gazelle I will be interested in Sushi's answer about the GcMAF as it relates to LDN. Sushi are you continuing the LDN during your treatments?
I drink a cup of coffee every morning & am on LDN and the coffee does not interfere in any way with my sleep. But maybe some people are more sensitive to effects of coffee. I could drink it an hr before bed and still have the exact same sleep patterns. Its probably an individual thing.

 

[Sushi]

Hi Gazelle,

Welcome to the forum! It is too bad that you are here (it means you have ME/CFS) but it is also a great place to learn and hang out and feel that you are not "weird" but normal--within this community that is.

I went up on my LDN dose very slowly. I waited till was completely stable on the new dose and then a few more days each time. It took me over 4 months to get up to 4.5 mg. After I reached about 3.5 mg it no longer bothered my sleep. When I reached a higher dose it actually allowed me to sleep as long as I needed (even 12 hours!) to repair from the activity of the day. Previously I would wake and not be able to get back to sleep.

And yes the combo of LDN and GcMAF is a question. I am seeing De Meirleir and when I first told him I was taking LDN, he said what you said: "no one knows exactly how it works." Then he told me to continue taking it.

My guess is that it has prevented some of the inflammation that others have experienced on LDN. My cytokine profile before beginning GcMAF show only one inflammatory cytokine out of range--IL 8 and it was only 40. This is probably because of LDN as it is atypical of CFS. Another friend seeing De Meirleir at the same time (who is also taking LDN) had a similar cytokine profile.

On the other hand we both have obvious signs that GcMAF is working--both in our experience and in our lab tests. On our next visit with De Meirlier (April 19th) we will ask again about LDN and whether it might be good to lower the dose.

And yes, I drink coffee! I have OI and it helps both as a vasoconstrictor and with brain fog. I don't drink it in the evening though and generally only one cup per day--but that cup is precious!

Best wishes with the LDN,
Sushi

 

[juniemarie]

Sushi So glad to hear that the treatment is working. Let us know what De Meirlier has to say about LDN when you see him next. Dont come home too soon, the wind has been very very ugly here in NM.

 

[SaraM]

Sara
It helps my digestion also. I have added sauerkraut and hope to start making kefir both add probiotics. Also I take lemon juice daily and have started low oxalate diet. The sauerkraut really help lots.

Juniemarie,
Thanks for your reply. I was taking kefir, and on a very low carb diet, while I started LDN . I also drank some hard liquor at the same time for 2 nights...Maybe that was the cause of oral thrush. I have been taking Clotrimazole lozenges for two days now and have not seen any improvement yet.I will give sauerkraut a try.

 

[juniemarie]

Sara I do think that in order to get the high quality and quantity of probiotics the kefir has to be made at home with fresh kefir grains.....from my reading and talking with very in the know kkefir people the stuff from the store is like comparing plastic flowers with real, probiotic wise. The sauerkraut is pretty much the same way you get the starter and make it from cabbage and iit is chock full of all sorts of different strains. Now I will say that I know of 1 brand that does have some live active pprobiotics and that is Bubbies. Its in the cooler section at health food store. Apparently it is not as good as it used to be as they started subjecting it to low levels of heat to pasteurize it although they say some of the good stuff remains because its very low heat. There are other brands on is Rejuvenative thats supposed to be one of the best..no heat. The Bubbies has helped me . I am working up to making my own kraut and kefir.

 

[Gazelle]

kefir

I drink a harvested coconut water kefir made by inner-eco. It's about $10 for a month's supply. I've also had kimchi suggested to me as a wonderful probiotic/gut tonic.

Thanks for the prompt reply Sushi. Do you recall feeling woozy/hungover when you first started taking LDN and, if so, how long it took for that to wear off?

 

[Claggy]

My experience with LDN so far

Hi all,

Thought I would make a short post on my experience with LDN so far.

I've been taking LDN for about a month and a half now. I started on 1.5mg and took that for a month with no effects or side effects, and then I increased to 3mg and have been taking 3 for a couple of weeks now. Still no effects, and other than my sleep being a little worse for the first couple of nights (nothing worse than what I experience sometimes anyway), I have had no side effects either. I'll be continuing to take it at this dose for the rest of the month, and will figure out what I need to do based on what happens by that time.

Hopefully I get some effects soon... though I do know it can take time!

 

[Sushi]

Thanks for the prompt reply Sushi. Do you recall feeling woozy/hungover when you first started taking LDN and, if so, how long it took for that to wear off?

Hi Gazelle,

No, I didn't experience anything like that. Every time I raised the dose though, I got some immune activation in that my immune system seemed to tackle old infections.

Best wishes,
Sushi

 

[SaraM]

Juniemarie,
My kefir is homemade. I have also seen the rejuvenative sauerkraut in my health food store....I will buy some very soon. Thanks again.

Gazelle,
Thank you for the tip on the coconut kefir. Inner-eco kefir sounds very good and cost effective.I will try this one,too.

 

[Gazelle]

Sleep cocktail

So, Sushi, you are on clonazepam, ambien, and LDN, but nothing else? I tried ambien, but really struggled with it. A lot of lucid dreaming and feeling like I was awake the whole time. Can I ask what dosing regimen you use besides the LDN? I am still not stabilizing on the LDN and may be experiencing immune activation myself. I am going to gut this out and try to move to 3 mg shortly, but my sleep is not improving yet, with a couple of nights of exceptions.

I was previously on a regimen of clonazepam, baclofen, gabapentin, and doxepin, all at small doses. That seemed to work well, but I dropped the gabapentin and baclofen (for the most part) when starting the LDN. I was really looking to use LDN as a sleep aid more than an immune modulator, though that would be a great side benefit. But, I've had to take Tylenol PM on many a nights because of a headache. This is tough stuff. Thanks for your time.

Gazelle.

 

[Sushi]

Hi Gazelle,

LDN bothered my sleep for a few days every time I raised the dose till I hit about 3.5 mg. And when I was up to 4.5, it began to actually help my sleep. I still have trouble falling asleep, (so I take clonazepam .5 mg, 10 mg of ambien (I got used to it), theonine 200mg, GABA1500 mg (I thinks) and melatonin 5 mg! Sleep has always been really hard for me!

But now, even if I wake up after 4 hours or so, I can go back to sleep and sleep as much as I need to on a given day. I couldn't do that before. I'm sure it is LDN. This happens to one of my friends too who has sleep problems.

Sushi

 

[SaveMe]

ive been on LDN for almost a week now, and I have no appetite.

someone please help me, is this normal?

 

[SaveMe]

also my extremities (hands and feet) are colder on LDN. Coincidence?

also my extremities (hands and feet) are colder on LDN.

Coincidence?

 

[*GG*]

ive been on LDN for almost a week now, and I have no appetite.

someone please help me, is this normal?

Are you depressed?

Please see this thread to help support LDN!
(It's only active for less than a week from now)

http://forums.phoenixrising.me/showthread.php?11117-Asking-for-

thanks in advance.

GG

 

[juniemarie]

You really should join the LDN Yahoo group it has hundreds of members who have experienced all sorts of reactions in the beginning ........thats where you will get the most help, and although I did not have this side effect, I had others, everyone is individual in regards to side effects..........I would bet money that you will find others that have had this at first.........usually things settle down and sometimes flare up when you increase a dose.

 

[Snowcat]

I've been on 3 mg LDN for a year and a half now. I was reading in Reviving the Broken Marionette that LDN has been reported to significantly reduce CFS/ME "crashes." I hadn't heard that before, but realized with a start that it appears to be true for me. I have been working nearly full time this year and have been surprised that I'm not having the kinds of crashes I used to - when I do have them, they're much milder and shorter in duration than they were before.

 

[sensing progress]

I've been on 3 mg LDN for a year and a half now. I was reading in Reviving the Broken Marionette that LDN has been reported to significantly reduce CFS/ME "crashes." I hadn't heard that before, but realized with a start that it appears to be true for me. I have been working nearly full time this year and have been surprised that I'm not having the kinds of crashes I used to - when I do have them, they're much milder and shorter in duration than they were before.

Same thing has happened for me. Crashes happen less often and much less severe.

 

[rosa]

ive been on LDN for almost a week now, and I have no appetite.

someone please help me, is this normal?

I've been taking LDN for two years now. The first week I started on 1.5mg & felt very nauseous & dizzy. I was unable to eat or stay upright, so in that sense i lost my appetite. I quickly changed the dose to 0.5mg. It took a week for the reactions to start subsiding.

I increased the dose very slowly from there and have taken the two years to get to 4.5mg. LDN definitely helps to stabilise things. There is a subtle underlying energy that I don't have without it. But it is a drug, albeit quite a benign one, and I have experienced strong reactions to starting it, or stopping it. It also has an accumulative effect. Some people only notice it's effect after months or even years.