OT: LDN advice

[Guest guest]

Hi everyone,

So...I am still flairing since last week, and it doesn't seem to be related to

any of the foods - more related to stress, or to cold symptoms (nasal mucous,

trouble breathing at night) or my period, which seems to be a factor. I am about

to move, and I have three finals to finish by tomorrow, which won't happen,

since it hurts to sit up and it is starting to send me to the bathroom to drink

water or sit up. Back up to 8 times/day from 1 - 3.

I am on 5mg prednisone still, as I have been for a month since trying to taper

off of it and flairing up then. I will hear back from my naturopath if she wants

me to go back up to 10mg prednisone. I'm still off of supplements, except

prednisone, acyclovir, which I have to keep taking, allegra (to see if an

antihistamine would help), and probiotics (boulardii and HLC intensive). I've

been eating yogurt again too. It seems to be getting worse rather than better.

So I am at the point where I want to try LDN. It seems like the only side

effects are sleeping difficulties, which seem way better than the side effects

of other drugs, including prednisone. It also seems that I can start it, and

taper off prednisone, but while I am taking both they will " cancel each other

out. " Not sure which aspect of which will cancel. Anyone know how this works?

I was also curious how long people have had to wait to see any turn-around of

symptoms? The main goal now is to stop my bleeding, since I'm losing more and

more blood with each stool.

Also, are there any other side effects or reactions people have experienced?

Oh, and does LDN mask the effects of eating different foods that might not

otherwise be tolerated, like prednisone does?

Thanks all, I'm just leary of starting a new drug after my experience with

mesalamine. I want to know what signs to look for that it is working/not

working.

Kat

27

UC since June 09

SCD since Feb 10

prednisone, acyclovir, allegra, probiotics

[Guest guest]

Hi Kat,

I'm on LDN and I have to take hydrocortisone. Have had to for fifty years

and probably always will. You can take 10mg or less of Prednisone

with LDN. I THINK the conflict here is that much over that starts

suppressing the immune system and LDN bucks it back up so they are at

cross-purposes so you'd THINK it would be a good thing, but they say

not. It sounds to me like you need to up the prednisone back to

that 10mg. People make the same mistake with LDN that they make

with SCD, expecting instant miracles so they think they can just ditch

all their meds. Very seldom is this teh case. You need to keep the meds

you really need until you are doing better, both more stable from that,

and LDN having time to help (same as with SCD) and THEN cut the

prednisone, and very slowly. Like I said I doubt I can ever cut HC again

but every time I've been able to (after needing more for some crisis

period) I've had to decrease like 50-100 times slower than the docs ever

say. I also wonder if you've just kicked in the s boulardii,

as well as yoghurt. You may be causing serious die-off of candida from

the s boulardii as well as from the gut bacteria from the pro-biotics. We

need to sneak into all these powerful things slowly.

OK, back to LDN. Except for a very few people the only side-effect

is sleep disturbances at first. Generally the first week. I have SO much

trouble with any kind of meds except replacement hormones like my HC and

thyroid, I didn't believe them. So I scheduled a pretty free week: no

dentist appointments or anything. I was really glad I did, because I DID

have the sleep disturbances. I'd wake up after about four hours,

bam! (That's when the endorphins kick in). And then I either dozed

or didnt' get back to sleep. By the end of a tired week I was thinking

well, it's like everything else, I won't be able to take this stuff. Then

suddenly on the 7th night, most of that went away. I still will wake up

sometimes, but it's not BAM! Just a wake-up, so I go to the

bathroom and go back to sleep. I've never gotten the lurid dreams people

talk about, but I would say that after that week, I sleep better most of

the time, deeper, and I am conscious of more regular dreams. There

are some things people can take, and need to take, to help get to sleep

better or sleep later. I take 5HTP, which usually helps me sleep

later. I suspect it's those of us who weren't good sleepers before

who need this extra help.

Anyhow, I do think it's worth trying. I've had a number of small

things improve a lot. Almost immediately (well, after I started

sleeping again) I started being generally more cheerful, feeling more

hopeful, etc. Even on a very bad day it isn't all gloom and doom any

more, I just think, oh, bad day, gut will be better tomorrow or I will

sleep better, etc. And I don't worry about it. Brain definitely

working better which is a real help. LDN definitely works better with a

good diet and of course SCD is one of the best. You do need to

address candida sooner or later but that should be done anyhow. I

am more than satisfied with my results so far, and I'm not even yet

supposedly on a therapeutic dose! I stopped increasing when I knew I

needed to address candida for awhile so I've just kept the dose where I

was.

I come to all this from IBS, not UC or Crohn's, so I don't have bleeding

unless a hemmorhoid pops out. So I can't tell you about the

bleeding stuff. I think LDN is working slowly with SCD to improve

gut things in general, which is what I expected. I am also seeing slow

improvements in pain from my fibro, so I'm taking less in the way of pain

meds. Like I say, it's gradual. You should

stay on what you need for these type symptoms for awhile.

I have NOT noticed anything like masking of food reactions. I'm still

quite capable of getting reactions when I test new foods! Remember, LDN

means LOW dose! This by itself avoids most side effects for most

people.

Please get back if I can answer any other questions. And I'd joing

the lowdosenaltrexone group, too, if you haven't. People with all levels

of experience and types of problems there to talk to.

Take care,

[Guest guest]

Hey Jodi ;-), yes it's the emu oil cream.  I put it right on my gut.  I just started it yesterday.  Was wondering about the optimal time to take it.  I had planned to increase slowly.  Yeast could be a factor, I have been doing garlic and coconut but can't do the oil of oregano right now.  I did it around 9p last night.  I thought I read something about mid-day though.

 

Thanks for the responses,

Debbie

 

Heya Debbie,The lethargy and exhaustion is something some of us have to work through. Are you gradually increasing your dose? What is that schedule like? Also, are you using the transdermal cream in the emu oil base?

Jodi

>> Just real quick question on LDN. I started it last night, slept fine,

> nothing out of the normal except maybe lack of lucid dreams. I am so> lethargic today. I have been lately anyway but does LDN help at all with> that? What's the optimal dosing time for those of us who cannot move during

> the day...today *seems* worse to me.> > Debbie houston cd 3.02 scd 12.05>

[Guest guest]

No, you do it, optimally from 9:00 PM until 3:00 AM, unless you are one of the people who use it and can't sleep, then takeit during the day.Gut is okay, but they say to put it on the back of your wrist or insideyour elbow, where the veins are close to the surface, where it can beabsorbed really quickly. Did you try the spit test for yeast first thing in the AM, before youhave had anything to drink or brushed your teeth? MaraHey Jodi ;-), yes it's the emu oil cream. I put it right on my gut. I just started it yesterday. Was wondering about the optimal time to take it. I had planned to increase slowly. Yeast could be a factor, I have been doing garlic and coconut but can't do the oil of oregano right now. I did it around 9p last night. I thought I read something about mid-day though. Thanks for the responses,Debbie Heya Debbie,The lethargy and exhaustion is something some of us have to work through. Are you gradually increasing your dose? What is that schedule like? Also, are you using the transdermal cream in the emu oil base?Jodi>> Just real quick question on LDN. I started it last night, slept fine,> nothing out of the normal except maybe lack of lucid dreams. I am so> lethargic today. I have been lately anyway but does LDN help at all with> that? What's the optimal dosing time for those of us who cannot move during> the day...today *seems* worse to me.> > Debbie houston cd 3.02 scd 12.05>

[Guest guest]

I am planning on starting LDN. Is it preferable to have it in a compound rather than in pill form? (Which is what I tried last year, pre SCD, with no noticeable results.)

DarleneIntestinal DysbiosisSCD 3 weeks

On the LDN group they say inner wrist and arm is where to apply (belly is usually used for hormones and such) you want fast absorption.Between 9pm-2am is good.What dose are you on?I'd stay on it for a couple of weeks and increase.Better to take out Yeast trigger foods too! Jodi

Looking for the perfect gift? Give the gift of Flickr!