Re:doctor for your son

[Guest guest]

Margaret,

I was interested to see that you said you previously took Remicade, now

LDN and have UC, because my 17yr old son has UC and has had 4 Remicade

infusions and I would love to switch him to LDN. But the theory that

you might not be able to go back to Remicade if you're off for too long

is a nagging concern (although of course we would hope the LDN works, so

we wouldn't really care.) Right now we are in the middle of working

through a Cdiff infection and some bacterial issues.

But I was wondering a) how long you were off Remicade before starting

LDN and how long before you felt improvement from the LDN? Also, if

you don't mind, what symptoms did you find the LDN helped? My son's

main symptom is unformed stool (not really diarrhea) and frequency. He

had seen big improvement while treating the Cdiff/bacteria, but it

didn't stay consistent, so we're trying to figure out what caused him to

slip back.

Thank you for any insight you are willing to share.

Sally

[Guest guest]

Sally,

I saw your message about Remicade and wanted to respond for whatever

help it might be. I am an adult diagnosed with Crohn's 3 years ago.

Having an enending flare, my gastro dr. talked me into having

Remicade IV's. I had two and then found out about LDN. Remicade is

a drug with so many possible adverse effects, including diminishing

your natural immune system, and I decided to try LDN instead. It was

probably about 8 weeks after the last IV of Remicade that I started

LDN. My gastro dr. would not prescribe LDN but an internet dr. did.

I had no problems with LDN. It greatly increased my energy level and

my last blood tests showed improvement. However, it did not

eliminate the problem of diarrhea, but that is something I will

continue to research for an answer...perhaps probiotics. An 18 yr.

old man I know was diagnosed with Crohn's, had surgery for a fissure,

and took Remicade for a year. Within two weeks of stopping Remicade,

his condition worsened, and he was in the hospital for surgical

removal of a portion of his intestine. Based on that history,

Remicade for all it's great expense is apparently not a long-term

solution. LDN does help and it has no dangerous side effects which is

such an important consideration. Best of luck with your doctor and

hope your son's symptoms improve.

Bobbie

>

> Margaret,

>

> I was interested to see that you said you previously took Remicade,

now

> LDN and have UC, because my 17yr old son has UC and has had 4

Remicade

> infusions and I would love to switch him to LDN. But the theory

that

> you might not be able to go back to Remicade if you're off for too

long

> is a nagging concern (although of course we would hope the LDN

works, so

> we wouldn't really care.) Right now we are in the middle of

working

> through a Cdiff infection and some bacterial issues.

>

> But I was wondering a) how long you were off Remicade before

starting

> LDN and how long before you felt improvement from the LDN?

Also, if

> you don't mind, what symptoms did you find the LDN helped? My

son's

> main symptom is unformed stool (not really diarrhea) and

frequency. He

> had seen big improvement while treating the Cdiff/bacteria, but it

> didn't stay consistent, so we're trying to figure out what caused

him to

> slip back.

>

> Thank you for any insight you are willing to share.

>

> Sally

>

[Guest guest]

Hello All re: Gastro Issues

Have any of you heard/tried the Specific Carbohydrate Diet or GAPS

diet? I have encountered many people who have experienced much

healing on them.

Best Wishes,

> I saw your message about Remicade and wanted to respond for whatever

> help it might be. I am an adult diagnosed with Crohn's 3 years ago.

> Having an enending flare, my gastro dr. talked me into having

> Remicade IV's.

[Guest guest]

Hi ,

Yes, I followed the SCD diet for more than a year without ever

cheating, but when I developed this long lasting flare, the diet was no

longer able to keep the Crohn's under control. I still follow most of

the SCD diet but have added rice and quinoa because I needed some

carbohydrate to help with terrible weight loss. I avoid other grains

and sugars other than honey. When having a flare, there are lots of

SCD diet foods that I could not tolerate, such as almond flour,

numerous vegetables, even the homemade yogurt, so it is really

difficult to then have enough food choices to maintain weight. I

believe the SCD is great, and when I was able to follow it completely,

I felt very healthy and had lots of energy...but could not gain

weight. I'd be the first to recommend it to anyone. I'm not familiar

with GAPS diet.

Bobbie

>

> Hello All re: Gastro Issues

> Have any of you heard/tried the Specific Carbohydrate Diet or GAPS

> diet? I have encountered many people who have experienced much

> healing on them.

>

> Best Wishes,

>

>

> > I saw your message about Remicade and wanted to respond for

whatever

> > help it might be. I am an adult diagnosed with Crohn's 3 years ago.

> > Having an enending flare, my gastro dr. talked me into having

> > Remicade IV's.

>

[Guest guest]

Hi Bobby,

I'm sorry it didn't work for you long term. GAPS is based on SCD

however there is a much more detailed introduction. Dr. Natasha

-McBride (the author) insists that the intro is crucial. She

uses the diet to help autistic kids/adults, digestive issues as well

as immune disorders. Sorry - I couldn't help more and all the best.

> Hi ,

>

> Yes, I followed the SCD diet for more than a year without ever

> cheating, but when I developed this long lasting flare, the diet was no

> longer able to keep the Crohn's under control.

[Guest guest]

Hi ! Yes, we use the SCD. It has been great for my 16 year old son who has Crohn's! He is currently off all medication and doing extremely well, but I lurk here to learn about LDN just in case.... He is very, very disciplined about things, so giving up sugar and other processed foods wasn't too difficult for him thankfully. I have not heard of the GAPS diet either.

[Guest guest]

Good for him - being so disciplined.

I know first hand how health can motivate you to 'do without' just

about anything.

All the best,

>

> Hi ! Yes, we use the SCD. It has been great for my 16 year old

> son who has Crohn's! He is currently off all medication and doing

> extremely well, but I lurk here to learn about LDN just in case.... He

> is very, very disciplined about things, so giving up sugar and other

> processed foods wasn't too difficult for him thankfully. I have not

> heard of the GAPS diet either.

>

[Guest guest]

, do you have a link for the GAPS diet? I would like to read about it! Thanks in advance!!!>> > Hi Bobby,> I'm sorry it didn't work for you long term. GAPS is based on SCD> however there is a much more detailed introduction. Dr. Natasha> -McBride (the author) insists that the intro is crucial. She> uses the diet to help autistic kids/adults, digestive issues as well> as immune disorders. Sorry - I couldn't help more and all the best.>

[Guest guest]

There's a few including a group like this one (very helpful):

http://gapsdiet.com/

http://www.guthealth.info/

GAPShelp

Good Luck,

> >

> >

> > Hi Bobby,

> > I'm sorry it didn't work for you long term. GAPS is based on SCD

> > however there is a much more detailed introduction. Dr. Natasha

> > -McBride (the author) insists that the intro is crucial. She

> > uses the diet to help autistic kids/adults, digestive issues as well

> > as immune disorders. Sorry - I couldn't help more and all the best.

> >

>

[Guest guest]

Hi Sally, hope it's ok that I just tune in here. :-)....have been answering you in earlier mails, but forgot to ask you the following:

have you found out if you want to give your son a try on Dr. McCandless Protocol? Just to scan for yeast and treat the clostridium at the same time? These two seems to stand in the way of getting better when using LDN, according to Dr. McCandless it's necessary following a spesific protocol that she has developed, I don't think it will give your son a hard time to follow it. She rx meds for both and you can use LDN at the same time.

Why not email Dr. McCandless and ask her for advice?

She even has her own group here at where she treats autistic kids with LDN. Those kids often have ibd in one way or another, which has led her to find a proper treatment for them so LDN could work even better. Yeast and clostridium seems to be a problem for many Crohns/U.C patients, - so you may have a chanse getting rid of those with a good treatment.

good luck from

:-)

Ingrid

[low dose naltrexone] Re:doctor for your sonMargaret,I was interested to see that you said you previously took Remicade, now LDN and have UC, because my 17yr old son has UC and has had 4 Remicade infusions and I would love to switch him to LDN. But the theory that you might not be able to go back to Remicade if you're off for too long is a nagging concern (although of course we would hope the LDN works, so we wouldn't really care.) Right now we are in the middle of working through a Cdiff infection and some bacterial issues. But I was wondering a) how long you were off Remicade before starting LDN and how long before you felt improvement from the

LDN? Also, if you don't mind, what symptoms did you find the LDN helped? My son's main symptom is unformed stool (not really diarrhea) and frequency. He had seen big improvement while treating the Cdiff/bacteria, but it didn't stay consistent, so we're trying to figure out what caused him to slip back.Thank you for any insight you are willing to share.Sally------------------------------------