LDN and Crohn's

[Guest guest]

I have had Crohn's since 2002 (as a result of a MMR vacination) and LDN

is my last shot at remission, as I have had severe reactions to conv

meds. I started at 3 mg and noticed improvement for 2 weeks then

symptoms returned. It was as though the Crohn's and LDN were battling

each other, as I would get worse in the evening when the LDN began to

wear off. I then increased my dosage by .5 mg each night until I

reached 4.5 mg. At that point I really got bad. I backed down to 4 mg

and I believe this is my majic number. I'm feeling great. It's only

been 3 nights on 4 mg. I just hope that it doesn't stop like it did on

3 mg after 2 weeks. Has anyone had this happen? I feel like I am on

my own here as my Dr. knows nothing about LDN - he just prescribes what

I ask him to.

[Guest guest]

>

> I started LDN December 23, 2006. I've had Crohn's disease forever,

and

> though I wasn't in a particularly bad way (I have solid stools 2X a

> day, and generally feel alright), my inflammation has been high the

> last year in response to an antibiotic I was given for something

> unnecessary, and all of last year, I've had to restrict fruit,

honey,

> peanuts, and cashews, as I probably had a yeast overgrowth and some

> other bad bacteria after the antibiotic, though I've taken every

> anti-candida natural remedy there is, as well as being on a candida

> diet the whole year, without it helping to lower my inflammatory

level.

> So I was hoping LDN would do the trick.

>

> The first few nights were weird; I couldn't sleep due to strange

brain

> surges, my entire body went numb, and I felt like there was an extra

> layer of skin when I touched my face. I was happier in the

mornings,

> felt the adrenaline rush, and by the fourth day, my chronic

abdominal

> pain was completely gone. It didn't effect my excessive mucus

around

> my bowel movements, or change them in any way, just the pain. I

> started adding fruit to my diet, a little at a time, and it seemed

to

> cause no regression, so things were looking up. I was going to take

a

> CRP test at the end of one month, to get real proof of improvement.

> After a few weeks, my stools seemed larger, and I had a little less

> mucus, and less hemmerhoid blood, but the hemmerhoids themselves

were

> actually more sore, probably due to the stools' size increase, but I

> figured it was a good sign.

>

> The last 10 days or so, the pain is coming back, (though it also

> coincided with my period, but now that I'm done with that, it hasn't

> gone back to the no pain as before) and I no longer have the body

> numbness at night. In fact, I don't really feel the effects of the

LDN

> at all, except that my dreams are very full. I was always a very

vivid

> dreamer, often with lucid dreams (where you know you are dreaming

and

> can control it), and the first week, my dream response was actually

> dulled. Then it was replaced with negative dreams, now they are

> negative about 50% of the time, the other time just very full of

> activity, and I sleep longer than I did before, and wake up groggy

and

> thickheaded, but unaffected by the negativity.

>

> The last two days, I've been very reactive to fiber, having looser

> stools with resuming blood, so the LDN is not really helping my food

> tolerances much, except for a little fruit, but I'm wondering now if

> that is receding as well.

>

> I have a week left to get to one month, then I'll take a CRP test; I

> planned to take another test at the end of 2 months, since that

seemed

> to be the peak of efficacy in the Penn State trial.

>

> Has my body just adjusted to the LDN? Is it normal to have quick

> improvement that recedes after a few weeks? Or is it like a

honeymoon

> drug that only works at first, and then you need to up the dose? I

> started at 4.5 mg, with lactose filler, so I don't have room to go

up.

> It seems like there are a few people with Crohn's who get immediate

> results, but then they fade again. Usually those people started at

a

> lower dose, so they had room to increase.

>

> I guess the CRP test will show a lot; if there is no improvement,

I'll

> still give it another month before I decide it isn't working. I've

got

> a few doctors who are interested in exploring antibiotic therapy;

I've

> tested negative to clostridium difficile in 3 stool tests, but an

> antibody blood test showed slightly above normal levels of this. A

> stool test last summer showed no candida, but also no acidopholus,

> despite taking high doses of probiotics. I'm also on the SCDiet,

have

> been for 3.5 years, and I was in complete remission and doing

> beautifully, with no inflammation, until that single antibiotic shot

a

> year ago. I was really hoping not to go down the whole antibiotic

> road, but if LDN doesn't work, or continues to fade in efficacy, I

> guess I'll have no choice. I am also loathe to start

> immunosuppressives, since it is so obvious that gut flora is the key

> role in my decline. It's just so hard to get back to a normal

balance

> of gut flora after everything's wiped out.

>

> Anyway, advice is needed.

>

> I asked about marijuana in another post, since this seemed to

coincide

> with my loss of response; I had been on vacation when I started LDN,

> and when I returned home, resumed smoking marijuana every few days,

and

> I was wondering if that negated the LDN. It seems by people's

> responses that it shouldn't, so I guess it was just coincidence of

> timing, but I should probably take it out and see if that brings any

> higher response rate, just in case. I just wish I could feel like I

> did those first 2 weeks, since it was very enjoyable being pain free

> and happy throughout the day for a change, with the optimism that

> something at last might be working!

>

> Debora

>

============

What does your diet consist of? Are you on a very strict low

carbohydrate diet eliminating from that diet sugar, dairy, all gluten,

soy and vinegar. Consult a dietary physician familiar with treating

crohn's.

Try these supplements along with diet...

Lauricidin--do a google search

A good quality probiotic-take 4 capsules per day

Oil of Oregano

N-A-G...N-acetylglucosamine

Olive Leaf Extract

Garlinase--do a google search...take 2 in AM, to at noon and 2 in PM.

Lots of alfalfa