LDN made big difference but had to stop

Yes... 3 was too high for me and would cause similar issues. I would go as low as 1 mg or 1.5 mg. If the sleep disturbances don't normalize at that dose after two or three weeks then perhaps it is not worth taking. Hope it works at that dose.

As far as weight gain, the only thing that worked for me was grass fed whey protein shakes with extra l-glutamine for intestinal repair, though I understand some have sensitivity to it (or avoid dairy altogether). I'm not too fond of protein shakes, as I prefer to eat from the real sources but it definitely made a difference.

Best.

Post Edited (Guardian7) : 3/27/2015 10:49:18 AM (GMT-6)

While trying many different things regarding treatments I discovered something that I hadn't been taking into account: Whenever I ate more, I pooped more and whenever I ate less, I pooped less. In other words, it is theoretically possible that the LDN really didn't make any difference. If it suppressed your appetite then you might have been pooping less and when you quit and your appetite returned, you started pooping more. Just a thought. Sometimes things aren't always as they seem.

zengrrl said...
Interesting theory gary, but it wasn't just the amount of poop...it was the quality as well, very nicely formed #4 looking stool. I was force-feeding myself and probably not eating quite the amount I am now. Now my stools are very bulky and loose, like 4 giant bowls full in the a.m. of loose fluffy looking bits. My diet hasn't changed, nor any other meds. I'm convinced it was the LDN.

Yes I'm going to try 1.5 mg soon G7! Thanks pb4 I LOVE peanut butter and eat it daily as well as my pumpkin seed protein drink. I might try the grass fed whey if it's not too pricey. I understand it's low in casein which I avoid. I'm just a little sad because I thought I was close to remission with the LDN.

There are a few caveats to using whey so you have to be a little careful when searching for a good brand. I learned this the hard way after trying a few brands with little success.

Go for the ones that have the least additives possible, as they can exacerbate UC. Also, avoid soy lecithin like the plague since it will most likely be GMO. Some manufacturers use sunflower lecithin instead which is a great alternative - it allows the whey to mix well with any smoothie. I personally use this one though it isn't grass fed. Here's a good guide that outlines why whey protein concentrate is preferable to isolate.

I mix in curcumin, chia seeds, l-glutamine and this super green powder to cover all the gut health basics.

Best.

juststud said...
so g man, what is it about whey protein that helped you gain weight - was it the healing properties that then lead to increased absorption of whatever you ate, or did you just eat a sh!t ton of it ?

I'm not sure... it was probably a bit of both. I think it addressed some severe malnourishment issues brought on by ravages of past disease activity. I mix it with an ounce of heavy cream to enhance absorption. I probably would have had similar results with raw goats milk, but there was a shortage.

The list of scientific benefits are summed up here.

Post Edited (Guardian7) : 3/27/2015 3:11:12 PM (GMT-6)

well, i think you will have an even harder time of gaining weight if you are going to the bathroom more now regardless of whether your appetite is improving. if food passes through so fast, you aren't getting the nutrients.

you need to get the inflammation under control and also eat some RS foods (and starches in general) to bulk up your stool. if i eat a single cold baked potato, i will be backed up for at least 3 days. also, chia seeds give me perfect poops. they gel up so nicely.

Why would anyone be taking 3mg nightly? That's triple the amount that I'm advised nightly (1.5mg). I have no side effects other than an itchy patch of skin above my forearm.

juststud said...
you should come up to my neck of the woods - there are raw goats everywhere - running down the streets, in department stores, roaming the foothills just north of my house ........ if you need one, lemme know


ya, i've never used any whey powder, just prefer to eat with less involvement of folks wanting to do their thing with my food -

but glad it works for you and hopefully other "on the slimmer side" folks

Yes... I could certainly use my own goat... Gandhi-style.

Gandhi rolled with a goat to sustain himself nutritionally. He said that raw goat milk helped him recover from medical procedures faster, though he regretted abandoning his vow of veganism afterwards. You do what you have to do to heal yourself... even if it means going against some core principles.

Post Edited (Guardian7) : 3/28/2015 2:01:14 PM (GMT-6)

stereofidelic89 said...

Guardian7 said...

stereofidelic89 said...
Why would anyone be taking 3mg nightly? That's triple the amount that I'm advised nightly (1.5mg). I have no side effects other than an itchy patch of skin above my forearm.

LDN is an emerging treatment for autoimmunity (relative to other medications), so I don't expect people in the medical community to know the exact dosage details. All they basically know is that 4.5 mg is the optimal dose, which is turning out to be somewhat inaccurate. From my personal observations and the stories from the users here, the dose is variable. Some will probably have success at higher doses.

I mean, I expect my prescribing doctor to make sure the dosage is adequate for my treatment, and thats why I'm not understanding if its a mistake that some people are being misled to take 4.5mg nightly. That's exactly how much is in my syringe (4.5) and i split in 3 nights. =/

Some people are fine with 1.5 mg, some with 3 mg, and others at 4.5 mg. I'm fine with 3 mg. I can't go past that dosage without having issues myself. The reason why I started having issues again was that I went down from 3 mg. I know people who have MS cannot go past 3 mg without having issues.
My doctor who prescribes ldn for pain said it be subjective for some. The dosage is just a guideline, and we need to figure out what the right dose is for us. That's the easiest I can explain it.