RE: Thinking about LDN...

[Guest guest]

I know there are a lot of folks on here that are on LDN. If you feel like it, it would be super awesome if you could write a few sentences about your experience with LDN, especially any side effects. Especially those of you with UC instead of Crohns!!! Since that's what I have. Just figured I'd add that. Thanks sooo much!!! Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)No meds!

[Guest guest]

why the change of heart about LDN? Once you know what foods you can have it should be easy.... right?-UC - 1+ yearsSCD - 7 months 100% strict and 4 months restricted diet.Asacol - 5 pills a day

To: BTVC-SCD From: luckycharms@...Date: Sun, 20 Dec 2009 20:16:35 -0500Subject: Re: Thinking about LDN...

I know there are a lot of folks on here that are on LDN. If you feel like it, it would be super awesome if you could write a few sentences about your experience with LDN, especially any side effects.

Especially those of you with UC instead of Crohns!!! Since that's what I have. Just figured I'd add that. Thanks sooo much!!!

Peace =)

Alyssa 15 yo

UC April 2008, dx Sept 2008

SCD June 2009 (restarted)

No meds!

Hotmail: Trusted email with Microsoft’s powerful SPAM protection. Sign up now.

[Guest guest]

Hi Alyssa

I would not let anyone or anything stop me from getting LDN. LDN has helped thousands and thousands of people. My dads stomach felt immediately stronger when he started to take it. It works very feel with our diet. The fact is that it does work better if you are gluten free. The only side effect that my family has got is very vivid dreams but they tend to go away. Candida also interfers with LDN. But if you do not have that then there is nothing stopping you. If you can't get from a doctor don't worry. There are other ways to get it.

Sky

To: BTVC-SCD Sent: Mon, 21 December, 2009 11:16:35 AMSubject: Re: Thinking about LDN...

I know there are a lot of folks on here that are on LDN. If you feel like it, it would be super awesome if you could write a few sentences about your experience with LDN, especially any side effects.

Especially those of you with UC instead of Crohns!!! Since that's what I have. Just figured I'd add that. Thanks sooo much!!!

Peace =)

Alyssa 15 yo

UC April 2008, dx Sept 2008

SCD June 2009 (restarted)

No meds!

See what's on at the movies in your area. Find out now.

[Guest guest]

Alyssa,

I chose LDN because the preliminary studies on it are hopeful and because it

made sense to me. My only side effects were some temporary waking up at night

and strange dreams, which went away.

LDN is also used with children with autism. I mention this because

you are still young and would want to know what age range has been using LDN. As

a parent, I would want to know this information before using it with my child.

I have probably not been on it long enough to get the full effect, but I do

believe that SCD and LDN have helped me. I still think the most important aspect

has been SCD, or the combination, since even on LDN I would not eat illegals.

Those of us in the first year of SCD are still in the beginning, which I realize

can have ups and downs. The reports on LDN are that feeling better is more

linear than cyclic.

PJ

>

> Okay, it's a sign of the apocalypse. Me, Miss Completely-Against-Drugs-

> Of-Any-Kind, is considering trying LDN, if I can get a prescription.

> All of you LDN broken records out there have worn me down =) It just

> seems like with only the diet, it's a lot more stressful trying to

> figure out what foods I should and shouldn't be eating, and since

> stress plays a major role in gut health, I'm trying to reduce mine.

>

> I know there are a lot of folks on here that are on LDN. If you feel

> like it, it would be super awesome if you could write a few sentences

> about your experience with LDN, especially any side effects. You can

> send this to me off list so it doesn't clutter the forum, unless

> others are interested in this. I want something to print out and give

> to my doctor to convince her that it could work for me safely. And I

> know some studies on LDN were posted here before, so I'm going to try

> to search for those, and if anyone has other good studies or articles,

> to post or send me, I'd really appreciate that too!

>

> If anyone wants, I can take all the info, testimonials, etc... that I

> collect for my doctor and save it in a file so that others who are

> interested in LDN can print it and take it to their Dr.

>

> Thanks for any help!

>

> Peace =)

> Alyssa 15 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

> No meds!

>

[Guest guest]

You didn't ask but <g> your signature says no meds.  You are only 15.  (Yeah, I'd give anything to feel 15 again...and so on...) but make sure you completely understand what you are getting into and that you can stop at anytime without ill effect.  Ask your parents.  I would hate to start anything new like that at 15.  Wait until you *need* it.  Think of the fun you'll have finding and trying new foods?

 

Debbie 40 cd or crohn's colitis or UC depending on the doctor ;-). 

Not legal or strict atm; going to redo pecanbread intro but luckily it's only a few days now to get straight instead of *months*

 

The above was not meant to offend anyone...

..

[Guest guest]

Not legal or strict atm; going to redo pecanbread intro but luckily it's only a

few days now to get straight instead of *months*

Does this mean you just do this when you feel out of sorts? Please explain.

PJ

>

> You didn't ask but your signature says no meds. You are only 15.

> (Yeah, I'd give anything to feel 15 again...and so on...) but make sure you

> completely understand what you are getting into and that you can stop at

> anytime without ill effect. Ask your parents. I would hate to start

> anything new like that at 15. Wait until you *need* it. Think of the fun

> you'll have finding and trying new foods?

>

> Debbie 40 cd or crohn's colitis or UC depending on the doctor ;-).

> Not legal or strict atm; going to redo pecanbread intro but luckily it's

> only a few days now to get straight instead of *months*

>

> The above was not meant to offend anyone...

>

> > .

> >

> >

> >

>

[Guest guest]

I do redo the intro when I feel out of sorts as far as making a big pot of chicken soup and fresh yogurt.

 

In this case, I had a blood panel at the doctor's office November 18th.  They faxed to the gastro who told me to go to the ER because my blood was too low.  They said I had developed antibodies (I already had K anti) and it would be a few days to get donations then screen/filter it.  My main PCP put me back on Repliva because I signed out of the hospital--it was two days before Thanksgiving and I was so miserable anyway...so in answer to your question <g>, the iron pills did a number on me now that I'm or was 'normal' for awhile.  I'm soooo constipated that I have decided even with being on the Repliva, I need to stay closer to the diet.  I was branching out and seeing what I could eat--and doing fine.

 

So if it's the stress or what I was eating--yogurt and r-c- and the iron pills, not much is helping.  Living on eggs is making it worse.

 

I did this to myself.  I'm trying to do a balancing act here and not eat a lot of salads and getting the problem worked out.  For now, I am not taking the Repliva.  As soon as I get something going, I have to go back on them at least until I'm at a semi-normal level with the blood.  In the meantime, the doc is working with me on the bleeding aspect.

 

So that's what is going on.  Like I said, it's always good imho to do the intro when you need it or feel like you need it.  I just need to get it all straight.  It's not that I went totally 'illegally eating anything I could' but I have had a huge appetite which isn't helping the problem.

 

Debbie 40 cd

[Guest guest]

How long have you been on SCD?

Hope you feel better soon

PJ

>

> I do redo the intro when I feel out of sorts as far as making a big pot of

> chicken soup and fresh yogurt.

>

> In this case, I had a blood panel at the doctor's office November 18th.

> They faxed to the gastro who told me to go to the ER because my blood was

> too low. They said I had developed antibodies (I already had K anti) and it

> would be a few days to get donations then screen/filter it. My main PCP put

> me back on Repliva because I signed out of the hospital--it was two days

> before Thanksgiving and I was so miserable anyway...so in answer to your

> question , the iron pills did a number on me now that I'm or was 'normal'

> for awhile. I'm soooo constipated that I have decided even with being on

> the Repliva, I need to stay closer to the diet. I was branching out and

> seeing what I could eat--and doing fine.

>

> So if it's the stress or what I was eating--yogurt and r-c- and the iron

> pills, not much is helping. Living on eggs is making it worse.

>

> I did this to myself. I'm trying to do a balancing act here and not eat a

> lot of salads and getting the problem worked out. For now, I am not taking

> the Repliva. As soon as I get something going, I have to go back on them at

> least until I'm at a semi-normal level with the blood. In the meantime, the

> doc is working with me on the bleeding aspect.

>

> So that's what is going on. Like I said, it's always good imho to do the

> intro when you need it or feel like you need it. I just need to get it all

> straight. It's not that I went totally 'illegally eating anything I could'

> but I have had a huge appetite which isn't helping the problem.

>

> Debbie 40 cd

>

[Guest guest]

A doctor can not legally prescribe anything to a 15 year old without parental

consent- so we are all assuming your parents are on board with this.

Perhaps some younger people, or parents of teens on LDN can add to this. LDN is

also used with children with autism, so there may be some information here on

use in kids. I wonder what the ages of people in the Pittsburg study are? The

results of this study should be available soon, I hope.

In the study I believe it is used short term.

Alyssa- get all the info you need- and of course with your parents involved as

well. You can then make an informed decision- either way.

PJ

>

> You didn't ask but your signature says no meds. You are only 15.

> (Yeah, I'd give anything to feel 15 again...and so on...) but make sure you

> completely understand what you are getting into and that you can stop at

> anytime without ill effect. Ask your parents. I would hate to start

> anything new like that at 15. Wait until you *need* it. Think of the fun

> you'll have finding and trying new foods?

>

> Debbie 40 cd or crohn's colitis or UC depending on the doctor ;-).

> Not legal or strict atm; going to redo pecanbread intro but luckily it's

> only a few days now to get straight instead of *months*

>

> The above was not meant to offend anyone...

>

> > .

> >

> >

> >

>

[Guest guest]

A doctor can not legally prescribe anything to a 15 year old without parental consent- so we are all assuming your parents are on board with this.Yeah, I kind of thought that went without saying...but to clarify, my parents, doctor and I are definitely making this decision TOGETHER, and only after looking at all pertinent information. Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)No meds!

[Guest guest]

Did the doctor that was testing your foods with your colon (AK?) not work out?

I'm going to be starting LDN soon! My pills have been shipped (I got them

without a prescription, so no doctor approval needed) and should be here any day

now :-). I'll post how it's working once I start.

Holly

Crohn's

SCD 12/01/08

>

> > why the change of heart about LDN? Once you know what foods you can

> > have it should be easy.... right?

>

>

> I guess that's the problem, I don't really know what foods I can have.

> The easiest way for me to find that out would be to go on the intro

> diet with only a couple of foods and then work my way up slowly, but

> both my parents are very opposed to that since " my diet is already so

> limited. " I'm going to be getting results from a stool test soon so

> that might give us some answers, but if it doesn't, and my parents

> still refuse to let me go on intro, my next step at this point is LDN.

>

> Peace =)

> Alyssa 15 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

> No meds!

>

[Guest guest]

Did the doctor that was testing your foods with your colon (AK?) not work out?He moved =( So now I feel kind of lost. Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)No meds!

[Guest guest]

Woohoo, Holly. That's really brave. I might have been

put off if I had to do that - though there are many more

people now doing LDN on the list then there were then.

So much more encouragement.

Mara

>

> I'm going to be starting LDN soon! My pills have been shipped (I got them

without a prescription, so no doctor approval needed) and should be here any day

now :-). I'll post how it's working once I start.

>

[Guest guest]

On Mon, 21 Dec 2009 23:07:55 -0500, Mara Schiffren alcibiades@...>

wrote:

> Woohoo, Holly. That's really brave. I might have been

> put off if I had to do that - though there are many more

> people now doing LDN on the list then there were then.

> So much more encouragement.

>

> Mara

My husband initially got his LDN in that manner, as many, many people do.

(He takes it for post-polio syndrome and it has stopped the progression of

his symptoms.) After he found it helpful, he asked his neurologist to

prescribe it; the guy wanted to research it and never got back to him, but

his local doctor wrote a prescription instead, so he doesn't need to order

the 50 mg. tablets and turn them into LDN liquid any more.

n

>

>

>

>>

>> I'm going to be starting LDN soon! My pills have been shipped (I got

>> them without a prescription, so no doctor approval needed) and should

>> be here any day now :-). I'll post how it's working once I start.

>>

>

--

Now available. A fine Christmas gift for cat lovers:

Confessions of a Cataholic: My Life With the 10 Cats Who Caused My

Addiction

by n Van Til

www.wordpowerpublishing.com ; signed copies; free shipping in U.S.,

reduced shipping elsewhere; free gift wrapping

[Guest guest]

It arrived yesterday :-)! I'll mix it up this afternoon, and take the first dose

tonight. Here's hoping for a serious energy boost!

Holly

Crohn's

SCD 12/01/08

>

> >

> > I'm going to be starting LDN soon! My pills have been shipped (I got them

without a prescription, so no doctor approval needed) and should be here any day

now :-). I'll post how it's working once I start.

> >

>

[Guest guest]

That is awesome Holly! I hope LDN helps you to heal, along with

SCD of course. I hope your body goes “woo hoo! Endorphins!” …mine

did. <g>

Carol

CD 21 yrs SCD 5 yrs

From:

BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of spookyhurst

It arrived yesterday :-)! I'll mix it up this

afternoon, and take the first dose tonight. Here's hoping for a serious energy

boost!

_,_._,___

[Guest guest]

Debbie 40 cd or crohn's colitis or UC depending on the doctor ;-).  This is a bit baffling.  It's pretty easy to diagnose CD vs. UC. 

Cheers,DF in MAUC June '07SCD Nov '08

[Guest guest]

>

> It just

> seems like with only the diet, it's a lot more stressful trying to

> figure out what foods I should and shouldn't be eating

Are you confused about legal/illegal, or trying to find out what foods

you can/can't tolerate? Keep in mind it can take months/years for UC

to respond to the SCD.

> and since

> stress plays a major role in gut health, I'm trying to reduce mine.

You mean anxiety, right? So what you're saying is figuring out the

diet causes you anxiety, is that right? (For the record, and

physiologically speaking, stress is anything that causes the body to

react. Anxiety is just one form of stress.)

> SCD June 2009 (restarted)

You restarted in June or have restarted since then?

--

Cheers,

DF in MA

UC June '07

SCD Nov '08

[Guest guest]

>

> I guess that's the problem, I don't really know what foods I can have.

Can you explain this further? Are you expecting your symptoms to go

away once you start the diet?

> The easiest way for me to find that out would be to go on the intro diet with

only a couple of foods and then work my way up

> slowly, but both my parents are very opposed to that since " my diet is already

so limited. "

Well, technically, out of the 1000 or so things that are edible, the

SCD only forbids 8 or so. If you're willing to be creative the diet

isn't as limiting as it may seem.

> I'm going to be getting results from a stool test soon so that might give us

some answers,

> but if it doesn't, and my parents still refuse to let me go on intro, my next

step at this point is LDN.

What does the stool test entail?

--

Cheers,

DF in MA

UC June '07

SCD Nov '08

[Guest guest]

The original dx was crohn's colitis; next doctor said Crohn's Disease with a Prometheus test, went aggressive/acute on me for awhile; new insurance and doctor said Crohn's Colitis with IBS--which the IBS symptoms led to a flare so I never really got that but she said diet modification would only work with IBS; the current gastro doc looked over all my records, switched my medicine and referred to it as Crohn's Colitis.  Took me off Pentasa and onto Asacol.  Yes, it's baffling because I'm almost sure it's Celiac even though I could never get anyone to tell me that ;-).

 

I've talked to people who've had switched dx and it's almost always from CD to celiac.  Also people who go for years with doctors, symptoms, dismissals and still no diagnosis.  Technology hasn't reached everywhere.  I'm lucky at least to live in a decent sized city where it was dx'd fast.

 

 

Debbie 40 cd or crohn's colitis or UC depending on the doctor ;-). 

This is a bit baffling.  It's pretty easy to diagnose CD vs. UC.

 Cheers,DF in MAUC June '07SCD Nov '08

[Guest guest]

> It just> seems like with only the diet, it's a lot more stressful trying to> figure out what foods I should and shouldn't be eatingAre you confused about legal/illegal, or trying to find out what foodsyou can/can't tolerate?The second one. Illegal/legal is pretty straightforward. Keep in mind it can take months/years for UCto respond to the SCD.Does it take longer on average than Crohns?> and since> stress plays a major role in gut health, I'm trying to reduce mine.You mean anxiety, right? So what you're saying is figuring out thediet causes you anxiety, is that right?I guess you could say that. (For the record, andphysiologically speaking, stress is anything that causes the body toreact. Anxiety is just one form of stress.)> SCD June 2009 (restarted)You restarted in June or have restarted since then?Restarted in June. Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)No meds!

[Guest guest]

> I guess that's the problem, I don't really know what foods I can have.Can you explain this further? Are you expecting your symptoms to goaway once you start the diet?Well, I've been on it for 7 months and the D has never stopped, so I guess I was sort of expecting at least some change...> The easiest way for me to find that out would be to go on the intro diet with only a couple of foods and then work my way up> slowly, but both my parents are very opposed to that since "my diet is already so limited."Well, technically, out of the 1000 or so things that are edible, theSCD only forbids 8 or so. If you're willing to be creative the dietisn't as limiting as it may seem.You don't have to tell me that. Tell my parents!> I'm going to be getting results from a stool test soon so that might give us some answers,> but if it doesn't, and my parents still refuse to let me go on intro, my next step at this point is LDN.What does the stool test entail?I think it tests for different gut bugs, and a bunch of other stuff. I'm not really sure, actually, but my parents are excited about it =) Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)No meds!

[Guest guest]

Seven months isn't that long in the scheme of things.  I think it takes longer for Crohn's but I don't know the opinions of the moderators.

 

I started scd 12.05--weighed in at 116 and was extremely anemic.  Went to the ER in January 06 and had to have a blood transfusion, fluids, steroids.  Took me until about May to taper off of it without flaring but I took forever on purpose so I wouldn't flare.

 

I have not been that great on the diet meaning I would get a lot better and start introducing illegal foods.  Your results may be different if you are strict--fanatically strict.  You have the anemia part down so that's good. 

 

Only in the last six months have I been normal enough to say 'normal'.  Before that, at least it wasn't the 3a-9a morning thing.  It got better but never 'normal'.  It took forever to get what everyone calls a trophy.  I didn't add a lot of supplements because of the anemic issues.

 

I also had 'extreme' financial issues ;-).  There's a lot of factors--sharing a kitchen--the 'weird food' comments and I'm 40!  You seem to deal so much better with it at your age.

 

So to me, seven months seems soon to be discouraged.  Maybe go through the book and see what you 'think' you can eat and try it.  Don't rely totally on the stages, it's not in the book anyway.  I did that starting out before I realized it was online and did fine except for a few (watermelon, winter squash and pumkin mistakes--will never touch those again!).  But give it time and try some parmesan and experiment with different foods if possible.  I always, always kept a pot of chicken soup and cheesecake in the fridge as a go-to the first year.  You could make some gelatin with juice and partially freeze it to chew on.  Banana pancakes--awesome. 

 

Someone always said something about the rabbit and the hare...slower is better even though we want it gone NOW.  Check out Foodnetwork for ideas if you like cooking shows.  Great time to get the knife skills and cooking skills up.  (I realize your age and you have tons of better things to do).

 

If the tests come back clear, you'll just have to stay with it and keep it basic so you can heal and eventually eat whatever you want.  It's worth it long term. 

 

Debbie 40 cd

[Guest guest]

>> > I guess that's the problem, I don't really know what foods I can>> have.>>>> Can you explain this further? Are you expecting your symptoms to go>> away once you start the diet?>> Well, I've been on it for 7 months and the D has never stopped, so I> guess I was sort of expecting at least some change...>Yes, I would expect that as well. That's a reasonable assumption. Alyssa, I really think you need to start taking LDN, and ASAP, as you suggested recently you were considering. For some people, maybe a lot of people, the diet alone just doesn't do it. There's no doubt that the two work together very well.n-- Now available. A fine  gift for cat lovers:Confessions of a Cataholic: My Life With the 10 Cats Who Caused My Addictionby n Van Tilwww.wordpowerpublishing.com ; signed copies; free shipping in U.S., reduced shipping elsewhere;

[Guest guest]

Alyssa, I really think you need to start taking LDN, and ASAP, as you suggested recently you were considering.That's actually not an option anymore. My doctor won't prescribe it, and my parents are with my doctor. =( Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)No meds!