Re: LDN, Crohn's, lactose

[Guest guest]

Well, it's been a continuous saga.... I have Crohn's; started LDN Dec.

22, 2006. My CRP was 8.5, and I was also on sulfasalazine, 8 a day; I

started with LDN w/lactose and got better at first, then worse. End of

1 month: CRP 11.10. 2 weeks later, 15.10. So I switched to cellulose

LDN; one month later, CRP was down to 8.5 again, and my Crohn's was

improving; I felt great! I didn't do anything different the month I

took LDN with lactose, and it was amazing how such a minute amount of

lactose (and we all know how small the compounded LDN pills are) could

double my inflammation. The sulfasalazine didn't protect from that,

and unfortunately, the LDN did not work to negate the reaction to

lactose.

I have been on the Specific Carbohydrate Diet for almost 4 years, which

is a diet free of lactose, sucrose, grains, among other things, so I do

not get lactose at all in my daily life.

Coincidentally, at the end of the month on the cellulose LDN, I started

getting weird reactions like numb hands, dizziness, which Skip and my

GP thought was the sulfasalazine. So I went off of it cold turkey, and

two weeks later, those effects were subsiding. My Crohn's, though

began worsening.

Here's a new piece of information I just figured out 3 days ago,

however. At the same time the side effects began, and I quit the

sulfasalazine, I also switched yogurt starters, and switched from cows

to goat yogurt, just to see if that made any difference. (I have been

making homemade cow's yogurt without incident for the last 3.5 years;

you ferment it for 24 hours so the bacteria eat the lactose, so it is a

virtually lactose free product.) What I just found out, is the yogurt

starter I switched to is very heat sensitive, and my husband was adding

it at too high a temperature and the yogurt maker was incubating it

also at too high a temperature. So for the last 5 weeks, I've been

eating who knows how much lactose (2-3 bowls of it a day) at the same

time that I dropped the sulfasalazine, which may have had a protecting

factor.

I'm disappointed that LDN cannot work with me with lactose involved, at

the same time happy to know that it's probably the lactose that has

worsened things. Or coming off of sulfasalazine. (The LDN with

cellulose seemed to bring my CRP level from 15 back to 8; unless it

was just the addition and removal of lactose all along.)

Now I just need to get out of this flare, and the LDN hasn't stopped it

nor has it helped it; in the past, I always went on the maximum dose of

sulfasalazine (8 a day) and took probiotics every hour around the

clock, while going on a simplified version of the SCDiet (blended

chicken soup, jello, yogurt, meat). I've started this a few days ago,

but this flare has been building for 5 weeks, and has gotten pretty bad

for me; diarrhea 3-4 times a day with 1 semi solid bowel movement,

mucus, and what looks like a lot of blood (though could be hemmerhoid

blood. I don't have a fever, or even much pain, except in my anus,

though that's getting better now that I'm having diarrhea...)

I've slowly come back on sulfa to see what I can tolerate; I'm up to 3

a day, and this morning my right hand is slightly numb and I have a

headache. I don't know how much sulfa ever helped, but would have

rather weaned off of it extremely gradually after months of perfect

health. My plan is to stay on the LDN, see if I can tolerate at least

4 sulfa a day for a while, and do my probiotics and HOPEFULLY things

will start to turn around now that I've taken the lactose back out

again. Before, it took a month to get back to where I was, but I

wasn't nearly as bad as I am now, and I hadn't ingested as much

lactose.

I could try a higher dose of the non sulfa alternative (5 ASA) but they

never really worked for me in the past, and I hesitate to throw a new

drug in my system, in case of a negative reaction to that. Before the

LDN, the sulfa never caused a problem except when I came on it too fast

after being off of it for some time. Skip described the LDN was

modulating my immune system and perhaps making an allergic reaction

that may have been there before more evident, but if it's modulating my

immune system so well, how come I'm flaring so badly from lactose?

Shouldn't it modulate my immune system so I'm not so sensitive to

dietary mistakes?

My GI doctor thinks it's the LDN that's causing the nueropathy and

dizziness, but why would it go away when I stopped sulfasalazine, and

start again when I start it? I would love to only be on LDN, but a

flare up can spiral out of control fast, and at least last year,

whenever I had a flare caused by eating something bad, or after a

stomach flu, the combo of 8 sulfa a day and diet and probiotics always

pulled me out of it. He suggests going off of LDN and seeing if I can

tolerate the sulfa at higher doses; and I admit, perhaps it's the two

drugs interacting badly. Part of me wants to give up on the LDN and

just go back to what worked before, gaining stability, then trying it

again in the future. But I wonder if the effects of LDN would remain;

my interolence of sulfa, and then I wouldn't have the potential

benefits of LDN, and would just be back where I started. I'm sort of

afraid of stopping LDN, in case that causes something new to happen. I

also added curcumin a few days ago, to try to bring the inflammation

down while I can't tolerate a lot of sulfa, since I tolerated turmeric

just fine and have been taking it this whole time.

It's all a complicated mess, and I'm not sure what to do. Advice?

Debora

[Guest guest]

I would try enzymes. Protease breaks down protein. Lipase breaks down fat. Amylase-carbs, etc. You can eat a good diet but if you don't have the proper enzymes to break down the food, what results? Stagnation of all systems of the body. lack of oxygen, arterial build up, constipation, etc. Enzymes are the foundation. We don't have alot in our foods anymore. The right enzymes can treat food allergies and are being used extensively in Austria and Germany. 70% of our immune system resides in the colon so if I had your condition, I would load up on the enzymes. Your vitamins are useless if you don't have them to break it all down and could actually be detrimental. I'm sorry this appears off topic but some things cannot be solved just by changing the LDN dose or the filler. It is the whole individual and if you need some help, I would be happy to try and offer some suggestions. Just e-mail me personally. Blessings, Kathy

[low dose naltrexone] Re: LDN, Crohn's, lactose

Well, it's been a continuous saga.... I have Crohn's; started LDN Dec. 22, 2006. My CRP was 8.5, and I was also on sulfasalazine, 8 a day; I started with LDN w/lactose and got better at first, then worse. End of 1 month: CRP 11.10. 2 weeks later, 15.10. So I switched to cellulose LDN; one month later, CRP was down to 8.5 again, and my Crohn's was improving; I felt great! I didn't do anything different the month I took LDN with lactose, and it was amazing how such a minute amount of lactose (and we all know how small the compounded LDN pills are) could double my inflammation. The sulfasalazine didn't protect from that, and unfortunately, the LDN did not work to negate the reaction to lactose.I have been on the Specific Carbohydrate Diet for almost 4 years, which is a diet free of lactose, sucrose, grains, among other things, so I do not get lactose at all in my daily life.Coincidentally, at the end of the month on the cellulose LDN, I started getting weird reactions like numb hands, dizziness, which Skip and my GP thought was the sulfasalazine. So I went off of it cold turkey, and two weeks later, those effects were subsiding. My Crohn's, though began worsening.Here's a new piece of information I just figured out 3 days ago, however. At the same time the side effects began, and I quit the sulfasalazine, I also switched yogurt starters, and switched from cows to goat yogurt, just to see if that made any difference. (I have been making homemade cow's yogurt without incident for the last 3.5 years; you ferment it for 24 hours so the bacteria eat the lactose, so it is a virtually lactose free product.) What I just found out, is the yogurt starter I switched to is very heat sensitive, and my husband was adding it at too high a temperature and the yogurt maker was incubating it also at too high a temperature. So for the last 5 weeks, I've been eating who knows how much lactose (2-3 bowls of it a day) at the same time that I dropped the sulfasalazine, which may have had a protecting factor.I'm disappointed that LDN cannot work with me with lactose involved, at the same time happy to know that it's probably the lactose that has worsened things. Or coming off of sulfasalazine. (The LDN with cellulose seemed to bring my CRP level from 15 back to 8; unless it was just the addition and removal of lactose all along.)Now I just need to get out of this flare, and the LDN hasn't stopped it nor has it helped it; in the past, I always went on the maximum dose of sulfasalazine (8 a day) and took probiotics every hour around the clock, while going on a simplified version of the SCDiet (blended chicken soup, jello, yogurt, meat). I've started this a few days ago, but this flare has been building for 5 weeks, and has gotten pretty bad for me; diarrhea 3-4 times a day with 1 semi solid bowel movement, mucus, and what looks like a lot of blood (though could be hemmerhoid blood. I don't have a fever, or even much pain, except in my anus, though that's getting better now that I'm having diarrhea...)I've slowly come back on sulfa to see what I can tolerate; I'm up to 3 a day, and this morning my right hand is slightly numb and I have a headache. I don't know how much sulfa ever helped, but would have rather weaned off of it extremely gradually after months of perfect health. My plan is to stay on the LDN, see if I can tolerate at least 4 sulfa a day for a while, and do my probiotics and HOPEFULLY things will start to turn around now that I've taken the lactose back out again. Before, it took a month to get back to where I was, but I wasn't nearly as bad as I am now, and I hadn't ingested as much lactose.I could try a higher dose of the non sulfa alternative (5 ASA) but they never really worked for me in the past, and I hesitate to throw a new drug in my system, in case of a negative reaction to that. Before the LDN, the sulfa never caused a problem except when I came on it too fast after being off of it for some time. Skip described the LDN was modulating my immune system and perhaps making an allergic reaction that may have been there before more evident, but if it's modulating my immune system so well, how come I'm flaring so badly from lactose? Shouldn't it modulate my immune system so I'm not so sensitive to dietary mistakes?My GI doctor thinks it's the LDN that's causing the nueropathy and dizziness, but why would it go away when I stopped sulfasalazine, and start again when I start it? I would love to only be on LDN, but a flare up can spiral out of control fast, and at least last year, whenever I had a flare caused by eating something bad, or after a stomach flu, the combo of 8 sulfa a day and diet and probiotics always pulled me out of it. He suggests going off of LDN and seeing if I can tolerate the sulfa at higher doses; and I admit, perhaps it's the two drugs interacting badly. Part of me wants to give up on the LDN and just go back to what worked before, gaining stability, then trying it again in the future. But I wonder if the effects of LDN would remain; my interolence of sulfa, and then I wouldn't have the potential benefits of LDN, and would just be back where I started. I'm sort of afraid of stopping LDN, in case that causes something new to happen. I also added curcumin a few days ago, to try to bring the inflammation down while I can't tolerate a lot of sulfa, since I tolerated turmeric just fine and have been taking it this whole time.It's all a complicated mess, and I'm not sure what to do. Advice?Debora

[Guest guest]

Hi Debbie,

Here is a site that has helpful information about treating Crohn's

disease:

http://www.webspawner.com/users/ecscrohnstx/index.html

Sincerely,

Cyberguy

cyberguy2_2006