LDN and Crohn's; sulfasalazine allergy

[Guest guest]

I started LDN with lactose on Dec. 22, last year for Crohn's. I've

been testing CRP (measure inflammation in the body) levels along with

my symptoms to determine efficacy. Before LDN my CRP level was 8.5

consistently for a year. After one month on the lactose LDN, I was up

to 11.10, and two weeks after that, 15.10. So I switched to Skip's

pharmacy, LDN with avicel. I also was taking sulfasalazine this whole

time (mild anti-inflammatory and antibiotic used as a daily medication

for Crohn's.) In January, I developed a rash across my butt that hurt

and felt a lot like shingles, though later I was told it wasn't the

herpes family. My doctor didn't know what it was.

So a month after Skip's LDN, my CRP was back down to 8.5, and my

Crohn's was doing much, much better. However, I was having horrible

symptoms like numb hands, the rash, feeling dizzy and out of my body.

Both my doctor and Skip thought I had become allergic to sulfasalazine,

so I stopped taking it a month ago. After two weeks, those symptoms

were going away, and now, one month after stopping it, they are pretty

much gone. So I guess I am now allergic to sulfasalazine, which Skip

described as a result of LDN adjusting my immune system, and perhaps I

was always allergic to it, but with a depressed immune system, it never

fully manifested.

The problem is, the last two weeks, my Crohn's symptoms are worsening.

More mucus, more pain; I have been having solid bowel movements pretty

much the whole time through this experiment, except when my CRP value

was 15.10; things were worse with more urgency, looser stools, more

mucus and blood, etc. Now the urgency is a little back, but not like a

few months ago, and I am having a little more mucus; hemmerhoids

bleeding off and on, and the pain is worsening to pre-LDN levels.

Obviously, the sulfasalazine was doing something, but now that the LDN

has made me allergic to it, I can't go back on it, and the less

allergenic forms of the medication never did much for me anyway. I am

experimenting with boswellia, which has shown to have equivalant

efficacy to sulfasalazine without the side effects, and it seems to be

helping a little, but I just tripled my dose from the ulcerative

colitus study to the Crohn's study (which used 3 X as much) and it's

only been a week on this new dose, or less. It supposedly takes 3

weeks to kick in.

So I was going to take another CRP test to measure the end of the

second month on Skip's LDN, but I haven't the heart. I'm sure, by my

symptoms, that I am back to the 11 level. I'm not sure where to go

from here; obviously the LDN with avicel was working to bring my

inflammation down from 15.10 to 8.5, and I was hoping to finally get

under that amount after January and February's demise. But I guess it

was both the sulfa and the LDN which was helping in combination for the

inflammation, and now, alone the LDN is not proving to be enough. Do I

need to give it more time? I don't really count my first 46 days on

the incorrect filler, since I don't know if it was the lactose or the

LDN itself that was bad. I've got no doctors supporting my use of LDN

except for the naturopath who prescribed it, and he has only used it

for cancer, and never returns my phone calls anyway. The Crohn's

study reached peak efficacy at 2 months, and then a slight decline at

3, and I know all of them were supposed to stay on their other

medications. I suppose I can give the boswellia more time, but it is

very expensive at the triple dose, and I wanted the LDN to work on its

own.

Any others with Crohn's that only need LDN? Do I just need to keep

hanging in there, or when do I decide to throw in the towel? My only

other drug choices are horrible, so I really want LDN to work. This

has been very disappointing.

Debora

[Guest guest]

>

> I started LDN with lactose on Dec. 22, last year for Crohn's. I've

> been testing CRP (measure inflammation in the body) levels along

with

> my symptoms to determine efficacy. Before LDN my CRP level was 8.5

> consistently for a year. After one month on the lactose LDN, I was

up

> to 11.10, and two weeks after that, 15.10. So I switched to

Skip's

> pharmacy, LDN with avicel. I also was taking sulfasalazine this

whole

> time (mild anti-inflammatory and antibiotic used as a daily

medication

> for Crohn's.) In January, I developed a rash across my butt that

hurt

> and felt a lot like shingles, though later I was told it wasn't the

> herpes family. My doctor didn't know what it was.

>

> So a month after Skip's LDN, my CRP was back down to 8.5, and my

> Crohn's was doing much, much better. However, I was having horrible

> symptoms like numb hands, the rash, feeling dizzy and out of my

body.

> Both my doctor and Skip thought I had become allergic to

sulfasalazine,

> so I stopped taking it a month ago. After two weeks, those

symptoms

> were going away, and now, one month after stopping it, they are

pretty

> much gone. So I guess I am now allergic to sulfasalazine, which

Skip

> described as a result of LDN adjusting my immune system, and perhaps

I

> was always allergic to it, but with a depressed immune system, it

never

> fully manifested.

>

> The problem is, the last two weeks, my Crohn's symptoms are

worsening.

> More mucus, more pain; I have been having solid bowel movements

pretty

> much the whole time through this experiment, except when my CRP

value

> was 15.10; things were worse with more urgency, looser stools, more

> mucus and blood, etc. Now the urgency is a little back, but not

like a

> few months ago, and I am having a little more mucus; hemmerhoids

> bleeding off and on, and the pain is worsening to pre-LDN levels.

> Obviously, the sulfasalazine was doing something, but now that the

LDN

> has made me allergic to it, I can't go back on it, and the less

> allergenic forms of the medication never did much for me anyway. I

am

> experimenting with boswellia, which has shown to have equivalant

> efficacy to sulfasalazine without the side effects, and it seems to

be

> helping a little, but I just tripled my dose from the ulcerative

> colitus study to the Crohn's study (which used 3 X as much) and it's

> only been a week on this new dose, or less. It supposedly takes 3

> weeks to kick in.

>

> So I was going to take another CRP test to measure the end of the

> second month on Skip's LDN, but I haven't the heart. I'm sure, by

my

> symptoms, that I am back to the 11 level. I'm not sure where to go

> from here; obviously the LDN with avicel was working to bring my

> inflammation down from 15.10 to 8.5, and I was hoping to finally get

> under that amount after January and February's demise. But I guess

it

> was both the sulfa and the LDN which was helping in combination for

the

> inflammation, and now, alone the LDN is not proving to be enough.

Do I

> need to give it more time? I don't really count my first 46 days on

> the incorrect filler, since I don't know if it was the lactose or

the

> LDN itself that was bad. I've got no doctors supporting my use of

LDN

> except for the naturopath who prescribed it, and he has only used it

> for cancer, and never returns my phone calls anyway. The Crohn's

> study reached peak efficacy at 2 months, and then a slight decline

at

> 3, and I know all of them were supposed to stay on their other

> medications. I suppose I can give the boswellia more time, but it

is

> very expensive at the triple dose, and I wanted the LDN to work on

its

> own.

>

> Any others with Crohn's that only need LDN? Do I just need to keep

> hanging in there, or when do I decide to throw in the towel? My

only

> other drug choices are horrible, so I really want LDN to work. This

> has been very disappointing.

>

> Debora

>

=======

You might try Ultimate FloraMax 50 Billion probiotic formula. The

first link tells about the product and the second link is where you

can purchase it....

This page tells you the ingredients.

Ultimate FloraMax - 50 Billion

http://www.advancednaturals.com/products/ultfloramax.html

The people at Advanced Naturals sent me this ordering page below. I've

been very pleased with all my orders.

The Ultimate FloraMax 50 Billion 30 capsules is listed at the very

bottom on page 2 so click on page 2 and scroll all the way to the

bottom.

Advanced Naturals

http://www.yourwaytowellness.com/shop/advnat.htm

Continue to take your LDN and avoid sugar, gluten and all dairy.

Are you at 4.5mg?

/Bren

[Guest guest]

Debora, I'm certainly no expert, but have you taken steps to repair the linings of your stomach and intestines? I remember hearing one of my doctors talk about this a couple of years ago. I know it involved HCL (hydrochloric acid) with meals and lots of probiotics, which mentioned. Start HCL slow. Like one capsule and work up to the maximum dose. Marcie Bren <b63powell@...> wrote: >> I started LDN with lactose on Dec. 22, last year for Crohn's. I've > been testing CRP (measure inflammation in the body) levels along with > my symptoms to determine efficacy. Before LDN my CRP level was 8.5 > consistently for a year. After one month on the lactose LDN, I was up > to 11.10, and two weeks after that, 15.10. So I switched to Skip's > pharmacy, LDN with avicel. I also was taking sulfasalazine this whole > time (mild anti-inflammatory and antibiotic used as a daily medication > for Crohn's.) In January, I developed a rash across my butt that hurt > and felt a lot like shingles, though later I was told it wasn't the > herpes family. My

doctor didn't know what it was.> > So a month after Skip's LDN, my CRP was back down to 8.5, and my > Crohn's was doing much, much better. However, I was having horrible > symptoms like numb hands, the rash, feeling dizzy and out of my body. > Both my doctor and Skip thought I had become allergic to sulfasalazine, > so I stopped taking it a month ago. After two weeks, those symptoms > were going away, and now, one month after stopping it, they are pretty > much gone. So I guess I am now allergic to sulfasalazine, which Skip > described as a result of LDN adjusting my immune system, and perhaps I > was always allergic to it, but with a depressed immune system, it never > fully manifested.> > The problem is, the last two weeks, my Crohn's symptoms are worsening. > More mucus, more pain; I have been having solid bowel movements pretty >

much the whole time through this experiment, except when my CRP value > was 15.10; things were worse with more urgency, looser stools, more > mucus and blood, etc. Now the urgency is a little back, but not like a > few months ago, and I am having a little more mucus; hemmerhoids > bleeding off and on, and the pain is worsening to pre-LDN levels. > Obviously, the sulfasalazine was doing something, but now that the LDN > has made me allergic to it, I can't go back on it, and the less > allergenic forms of the medication never did much for me anyway. I am > experimenting with boswellia, which has shown to have equivalant > efficacy to sulfasalazine without the side effects, and it seems to be > helping a little, but I just tripled my dose from the ulcerative > colitus study to the Crohn's study (which used 3 X as much) and it's > only been a week on this new dose, or less.

It supposedly takes 3 > weeks to kick in.> > So I was going to take another CRP test to measure the end of the > second month on Skip's LDN, but I haven't the heart. I'm sure, by my > symptoms, that I am back to the 11 level. I'm not sure where to go > from here; obviously the LDN with avicel was working to bring my > inflammation down from 15.10 to 8.5, and I was hoping to finally get > under that amount after January and February's demise. But I guess it > was both the sulfa and the LDN which was helping in combination for the > inflammation, and now, alone the LDN is not proving to be enough. Do I > need to give it more time? I don't really count my first 46 days on > the incorrect filler, since I don't know if it was the lactose or the > LDN itself that was bad. I've got no doctors supporting my use of LDN > except for the naturopath who prescribed

it, and he has only used it > for cancer, and never returns my phone calls anyway. The Crohn's > study reached peak efficacy at 2 months, and then a slight decline at > 3, and I know all of them were supposed to stay on their other > medications. I suppose I can give the boswellia more time, but it is > very expensive at the triple dose, and I wanted the LDN to work on its > own.> > Any others with Crohn's that only need LDN? Do I just need to keep > hanging in there, or when do I decide to throw in the towel? My only > other drug choices are horrible, so I really want LDN to work. This > has been very disappointing.> > Debora>=======You might try Ultimate FloraMax 50 Billion probiotic formula. The first link tells about the product and the second link is where you can purchase it....This page tells you the ingredients.Ultimate

FloraMax - 50 Billionhttp://www.advancednaturals.com/products/ultfloramax.htmlThe people at Advanced Naturals sent me this ordering page below. I've been very pleased with all my orders.The Ultimate FloraMax 50 Billion 30 capsules is listed at the very bottom on page 2 so click on page 2 and scroll all the way to the bottom.Advanced Naturalshttp://www.yourwaytowellness.com/shop/advnat.htmContinue to take your LDN and avoid sugar, gluten and all dairy.Are you at 4.5mg?/Bren

[Guest guest]

In a message dated 4/16/07 8:41:30 PM Eastern Daylight Time, debbie@... writes:

Custom Probiotics' 6 strain formula

I tried to find a website and couldn't. I am currently taking VSL#3 and it helps a little but has it's limits and is very expensive.************************************** See what's free at http://www.aol.com.

[Guest guest]

Debora:

I agree about the probiotics. I take a six strain powder form, which

alone kept me in remission for two year. I truly believe in

probiotics. It may be the answer for you.

Upon beginning LDN, it took about 5 weeks to be symptom free , and

remaining so for about a month, then symptoms returned for a month

and now I'm doing well since the first week of Feb. 07. That's the

longest I've gone in over two years. I do have a day here and there

that I feel a faint cramp, but nothing else, so I'm satisfied. And

those days are probably a result of eating poorly.

I sure would give LDN more time. Just think of our alternatives.

Wishing you good health

Vicky

>

> I started LDN with lactose on Dec. 22, last year for Crohn's. I've

> been testing CRP (measure inflammation in the body) levels along

with

> my symptoms to determine efficacy. Before LDN my CRP level was 8.5

> consistently for a year. After one month on the lactose LDN, I was

up

> to 11.10, and two weeks after that, 15.10. So I switched to

Skip's

> pharmacy, LDN with avicel. I also was taking sulfasalazine this

whole

> time (mild anti-inflammatory and antibiotic used as a daily

medication

> for Crohn's.) In January, I developed a rash across my butt that

hurt

> and felt a lot like shingles, though later I was told it wasn't the

> herpes family. My doctor didn't know what it was.

>

> So a month after Skip's LDN, my CRP was back down to 8.5, and my

> Crohn's was doing much, much better. However, I was having

horrible

> symptoms like numb hands, the rash, feeling dizzy and out of my

body.

> Both my doctor and Skip thought I had become allergic to

sulfasalazine,

> so I stopped taking it a month ago. After two weeks, those

symptoms

> were going away, and now, one month after stopping it, they are

pretty

> much gone. So I guess I am now allergic to sulfasalazine, which

Skip

> described as a result of LDN adjusting my immune system, and

perhaps I

> was always allergic to it, but with a depressed immune system, it

never

> fully manifested.

>

> The problem is, the last two weeks, my Crohn's symptoms are

worsening.

> More mucus, more pain; I have been having solid bowel movements

pretty

> much the whole time through this experiment, except when my CRP

value

> was 15.10; things were worse with more urgency, looser stools, more

> mucus and blood, etc. Now the urgency is a little back, but not

like a

> few months ago, and I am having a little more mucus; hemmerhoids

> bleeding off and on, and the pain is worsening to pre-LDN levels.

> Obviously, the sulfasalazine was doing something, but now that the

LDN

> has made me allergic to it, I can't go back on it, and the less

> allergenic forms of the medication never did much for me anyway. I

am

> experimenting with boswellia, which has shown to have equivalant

> efficacy to sulfasalazine without the side effects, and it seems to

be

> helping a little, but I just tripled my dose from the ulcerative

> colitus study to the Crohn's study (which used 3 X as much) and

it's

> only been a week on this new dose, or less. It supposedly takes 3

> weeks to kick in.

>

> So I was going to take another CRP test to measure the end of the

> second month on Skip's LDN, but I haven't the heart. I'm sure, by

my

> symptoms, that I am back to the 11 level. I'm not sure where to go

> from here; obviously the LDN with avicel was working to bring my

> inflammation down from 15.10 to 8.5, and I was hoping to finally

get

> under that amount after January and February's demise. But I

guess it

> was both the sulfa and the LDN which was helping in combination for

the

> inflammation, and now, alone the LDN is not proving to be enough.

Do I

> need to give it more time? I don't really count my first 46 days

on

> the incorrect filler, since I don't know if it was the lactose or

the

> LDN itself that was bad. I've got no doctors supporting my use of

LDN

> except for the naturopath who prescribed it, and he has only used

it

> for cancer, and never returns my phone calls anyway. The Crohn's

> study reached peak efficacy at 2 months, and then a slight decline

at

> 3, and I know all of them were supposed to stay on their other

> medications. I suppose I can give the boswellia more time, but

it is

> very expensive at the triple dose, and I wanted the LDN to work on

its

> own.

>

> Any others with Crohn's that only need LDN? Do I just need to keep

> hanging in there, or when do I decide to throw in the towel? My

only

> other drug choices are horrible, so I really want LDN to work.

This

> has been very disappointing.

>

> Debora

>

[Guest guest]

On Apr 16, 2007, at 2:54 PM, Marcie wrote:

> Debora,

>  

> I'm certainly no expert, but have you taken steps to repair the

> linings of your stomach and intestines?  I remember hearing one of my

> doctors talk about this a couple of years ago.  I know it involved HCL

> (hydrochloric acid) with meals and lots of probiotics, which

> mentioned.  Start HCL slow.  Like one capsule and work up to the

> maximum dose.

>  

I'm already doing loads of high potency probiotics; haven't had gluten,

sugar for over 4 years, dairy only in the form of goat yogurt 24 hour

fermented. My stomach and small intestine has never been involved;

it's colonic Crohn's disease, and I don't think HCL is indicated for

the rectum. I've tried it in the past without noticeable improvement.

[Guest guest]

On Apr 16, 2007, at 5:03 PM, victoria_schofield wrote:

>

>

> Debora:

> I agree about the probiotics. I take a six strain powder form, which

> alone kept me in remission for two year. I truly believe in

> probiotics. It may be the answer for you.

Already taking Custom Probiotics' 6 strain formula in the evening, and

all the lactobacilli that he makes in the morning. I've also

experimented with VSL#3, e.coli Nissle, and Natren healthy Trinity. I

find the Custom the best, but even high doses of it last year never

brought my inflammation down. So I guess I'll stick to the Custom

probiotics, boswellia, and LDN and see what happens in another

month.....

[Guest guest]

DEBBIE - why don't you try MSM - a supplement that i've been using for about 10 yrs., now. it helps to heal tissue!! MSM=methylsulfonylmethane!! i take 1000 mgs./ 4 capsules = 4000 mgs., at least 3X's a day, with meals. i believe it has kept me from needing surgery for crohn's, during the 16 yrs. that i've had it!! i try never to be without MSM, and purchase it, even if i'm not running out of the supply. it can be purchased at most health food stores, some super markets, rite aid, cvs, etc.

marshiris@...

See what's free at AOL.com.

[Guest guest]

And make sure you don't take the HCL on an empty stomach or with a salad only. it should be a meal of some sort. The HCL really eliminates the need for Nexium or Prilosec for most people. It is usually the lack of good acid and not too much which causes the GERD. Best, kathy

Re: [low dose naltrexone] Re: LDN and Crohn's; sulfasalazine allergy

On Apr 16, 2007, at 2:54 PM, Marcie wrote:> Debora,> > I'm certainly no expert, but have you taken steps to repair the > linings of your stomach and intestines? I remember hearing one of my > doctors talk about this a couple of years ago. I know it involved HCL > (hydrochloric acid) with meals and lots of probiotics, which > mentioned. Start HCL slow. Like one capsule and work up to the > maximum dose.> I'm already doing loads of high potency probiotics; haven't had gluten, sugar for over 4 years, dairy only in the form of goat yogurt 24 hour fermented. My stomach and small intestine has never been involved; it's colonic Crohn's disease, and I don't think HCL is indicated for the rectum. I've tried it in the past without noticeable improvement.

[Guest guest]

I also read where MSM helps repair myelin.

Re: [low dose naltrexone] Re: LDN and Crohn's; sulfasalazine allergy

DEBBIE - why don't you try MSM - a supplement that i've been using for about 10 yrs., now. it helps to heal tissue!! MSM=methylsulfonylmethane!! i take 1000 mgs./ 4 capsules = 4000 mgs., at least 3X's a day, with meals. i believe it has kept me from needing surgery for crohn's, during the 16 yrs. that i've had it!! i try never to be without MSM, and purchase it, even if i'm not running out of the supply. it can be purchased at most health food stores, some super markets, rite aid, cvs, etc.

marshirisaol

See what's free at AOL.com.

[Guest guest]

The best place to purchase MSM, is at a feed store.

>

> I also read where MSM helps repair myelin.

>

> Re: [low dose naltrexone] Re: LDN and Crohn's;

sulfasalazine allergy

>

>

>

> DEBBIE - why don't you try MSM - a supplement that i've been using

for about 10 yrs., now. it helps to heal tissue!!

MSM=methylsulfonylmethane!! i take 1000 mgs./ 4 capsules = 4000 mgs.,

at least 3X's a day, with meals. i believe it has kept me from

needing surgery for crohn's, during the 16 yrs. that i've had it!! i

try never to be without MSM, and purchase it, even if i'm not running

out of the supply. it can be purchased at most health food stores,

some super markets, rite aid, cvs, etc.

>

> marshiris@...

>

>

>

>

>

>

>

>

----------------------------------------------------------------------

--------

> See what's free at A