Re: LDN, Crohn's, not working

April 22, 2007

Sorry to hear that Deborah,

I am considering trying LDN for my Crohn's but not too sure yet. I

have been thinking that I will give it a month or so. The original

pilot study had people responding significantly in the first four

weeks. I think if you are into your third month you may be better off

looking for another treatment.

I know that doesn't sound too good.

What else have you tried? Immuran? Anything like that.

>

> Are there only three of us with Crohn's disease here? And am I the

> only one that LDN is not working for? I had to go off my other

> medication sulfasalazine a month ago, since the LDN probably

> contributed to me suddenly becoming allergic to it. The numb hands and

> dizziness has now gone away (5 weeks off of it) but also, the last 2-3

> weeks, my Crohn's has steadily declined, and I am back to pre-LDN days

> of mucus, urgency, blood, looser stools, and pain, sometimes nausea.

> Obviously the sulfasalazine was doing something, and together with the

> LDN after the first month on the non lactose formulation, I was feeling

> great Crohn's wise, but had those nasty side effects. Now I'm starting

> with 1 sulfasalazine a day and sitting with that for a few days, and

> then I'll add another and another to see what my threshold is before

> the symptoms return. I never did well with another Crohn's med, and I

> was hoping the LDN alone would do the trick, but it's obviously not.

> It's very disapointing to have LDN negate my other drug (which wasn't

> great on its own) but not be enough to hold me. I substituted

> boswellia (which is supposed to have similar efficacy to sulfasalazine)

> but it's not helping, obviously. I take tons of probiotics, am on the

> Specific Carbohydrate Diet, (no starch, no sugar, dairy only in the

> form of 24 hour fermented yogurt and the occasional goat cheese). I'm

> getting very discouraged. I'm into the 3rd month of LDN, so it should

> be working by now, if I go on the Crohn's studies. How long do I give

> LDN before I give up?

>

> Debora

>

April 23, 2007

I know someone who is involved in a study with LDN and Chrohn from Pennsylvania. Actually I don't know him but he is best friends with a clients' son. I will find out his e-mail and get him involved with this group or at least speak with you in an e-mail. Best, Kathy

[low dose naltrexone] LDN, Crohn's, not working

Are there only three of us with Crohn's disease here? And am I the only one that LDN is not working for? I had to go off my other medication sulfasalazine a month ago, since the LDN probably contributed to me suddenly becoming allergic to it. The numb hands and dizziness has now gone away (5 weeks off of it) but also, the last 2-3 weeks, my Crohn's has steadily declined, and I am back to pre-LDN days of mucus, urgency, blood, looser stools, and pain, sometimes nausea. Obviously the sulfasalazine was doing something, and together with the LDN after the first month on the non lactose formulation, I was feeling great Crohn's wise, but had those nasty side effects. Now I'm starting with 1 sulfasalazine a day and sitting with that for a few days, and then I'll add another and another to see what my threshold is before the symptoms return. I never did well with another Crohn's med, and I was hoping the LDN alone would do the trick, but it's obviously not. It's very disapointing to have LDN negate my other drug (which wasn't great on its own) but not be enough to hold me. I substituted boswellia (which is supposed to have similar efficacy to sulfasalazine) but it's not helping, obviously. I take tons of probiotics, am on the Specific Carbohydrate Diet, (no starch, no sugar, dairy only in the form of 24 hour fermented yogurt and the occasional goat cheese). I'm getting very discouraged. I'm into the 3rd month of LDN, so it should be working by now, if I go on the Crohn's studies. How long do I give LDN before I give up?Debora

April 23, 2007

There are others here with crohn's dz.....

You sound like you are doing the number one thing anyone with crohns

should consider: The specific carbohydrate diet --- very effective,

how long on the diet have you been? some need to adhere to the diet

for a year --- it reduces the small bowel overgrowth -- it has been my

diet for many years

Consider other compounding conditions: particularly small bowel

overgrowth : easily tested these days with a lactolose challenge --

MDS can prescribe a non absorbable antibiotic (works only in the gut)

these days like refaximin

Secondarily: consider Getting Assessed with a hydrogen urea breath

test for h.pylori common with those with crohn's:

Also, with crohn's , consider that various nutritional deficiencies

common due to the malabsorbtion: iron anemia -- vitamin d -- other

fat soluble vitamins --- usually mineral issues calcium -- magnesium

-- get testing for these

i also suggest considering a stool analysis test looking for parasites

and assessment of bowel function ---

these compounding problems could compromise your response to LDN ...

and may require a consultation with a doctor sympathetic to testing

for these conditions ---

best wishes