Re: Have to get colon fully removed in next few weeks

[Guest guest]

The phase 2 trial ay penn state is complete. Phase 1 had 17 people involved and 67% went into remission, 89% showed some improvement (as per colonoscopy not just how they felt) 100% felt better overall.Phase 2 had 40 people. 45% rent into remission and I forget the other stats. You can compare this to Remicade which has a 40% success rate to remission. I'll take that 5% with no bad side effects and cheap even without insurance any day. -UC - 1+ yearsSCD - 11 months 100% strict and 4 months restricted diet.Colazol - 9 pills a day Prednisone 25mg entocort With vit E mixed inBack to intro/stage 1 for now.To: BTVC-SCD From: smdsmom2008@...Date: Tue, 25 May 2010 11:45:27 +0000Subject: Re: Have to get colon fully removed in next few weeks

I looked at the "negative" article and the premise is that, with only preliminary studies, proponents of LDN should not advertise it as a treatment for a multitude of conditions. However, preliminary studies indicate that is could be helpful with IBD.

In the medical/scientific sense- the best conclusion is that we need more studies to clarify this. Unfortunately, naltrexone is a cheap drug and there is no profit to be made from these studies so there is not likely to be funding for them. I believe there is a study at Penn State (?)in progress.

Those of us that are doing LDN are not waiting for further studies and are deciding current evidence is enough.

The fallacy in this article is to write off LDN because of those who may be stretching its claims beyond current research.

PJ

> >

> > Thanks Mara. Here's the thing -- I don't want to leave my current Dr. He's very good and supportive of SCD -- he just doesn't buy into some of the alternative meds/supplements.

> >

> > Do you think I could still get this script and keep him?

> >

> >

>

The New Busy think 9 to 5 is a cute idea. Combine multiple calendars with Hotmail. Get busy.

[Guest guest]

That paper was kind of a joke - except for the effect it may have.Here's a doctor who is a professional skeptic, looking at people's excitement about LDN -most of them people for whom conventional meds don't work or don't work well - and decidingon purely aesthetic grounds that must mean it's all a bunch of snake oil, i.e., that it doesn'tsmell right to him, or that it must be a placebo. Does he have first hand experience with it? No. Did he talk to doctorsusing it on patients and doctors who are in the middle of studies? No. (At leastnot in the parts I read - I skimmed parts of it.) Does he regard Dr. Bihari'sstatement that is utilizes a different paradigm in healing than the mode thatmost western medicine utilizes? No, except to the extent that he obviouslyfinds that a dangerous way to think. Does he have a personal stake in this? No. Except maybe as career enhancement if he manages to draw more professional skepticism toLDN. Does he want to help people? Oh yeah - he's a real humanitarian andwants to save them from feeling better with LDN because the research and people's first hand experience can't possibly support their claims, can it. And then he allows, in the most repressive way possible, that quite possibly it deserves more research. MaraThe phase 2 trial ay penn state is complete. Phase 1 had 17 people involved and 67% went into remission, 89% showed some improvement (as per colonoscopy not just how they felt) 100% felt better overall.Phase 2 had 40 people. 45% rent into remission and I forget the other stats. You can compare this to Remicade which has a 40% success rate to remission. I'll take that 5% with no bad side effects and cheap even without insurance any day. -UC - 1+ yearsSCD - 11 months 100% strict and 4 months restricted diet.Colazol - 9 pills a day Prednisone 25mg entocort With vit E mixed inBack to intro/stage 1 for now.To: BTVC-SCD From: smdsmom2008@...Date: Tue, 25 May 2010 11:45:27 +0000Subject: Re: Have to get colon fully removed in next few weeksI looked at the "negative" article and the premise is that, with only preliminary studies, proponents of LDN should not advertise it as a treatment for a multitude of conditions. However, preliminary studies indicate that is could be helpful with IBD.In the medical/scientific sense- the best conclusion is that we need more studies to clarify this. Unfortunately, naltrexone is a cheap drug and there is no profit to be made from these studies so there is not likely to be funding for them. I believe there is a study at Penn State (?)in progress.Those of us that are doing LDN are not waiting for further studies and are deciding current evidence is enough.The fallacy in this article is to write off LDN because of those who may be stretching its claims beyond current research.PJ> >> > Thanks Mara. Here's the thing -- I don't want to leave my current Dr. He's very good and supportive of SCD -- he just doesn't buy into some of the alternative meds/supplements.> > > > Do you think I could still get this script and keep him?> > > >>The New Busy think 9 to 5 is a cute idea. Combine multiple calendars with Hotmail. Get busy.

[Guest guest]

I agree Mara- this article is full of bias. It reads more like a smug statement

that anything not up to their snuff is not useful. Research is a gold standard,

and the tendency is to discount anything that has not been fully researched.

History is full of examples of good treatments that were discounted initially,

as well as " snake oil " remedies.

One tragedy is the number of promising treatments that will not be researched

because there is no funding for it. Drug companies are more interested in

investigating new drugs that can be patented.

This leaves us, the few people who believe in their cause- Bihari, Elaine, to

pursue treatments like LDN, SCD, on our own. Thank goodness for the few who

believe in doing good for it's own sake.

PJ

> > > >

> > > > Thanks Mara. Here's the thing -- I don't want to leave my current Dr.

He's very good and supportive of SCD -- he just doesn't buy into some of the

alternative meds/supplements.

> > > >

> > > > Do you think I could still get this script and keep him?

> > > >

> > > >

> > >

> >

> >

> >

> > The New Busy think 9 to 5 is a cute idea. Combine multiple calendars with

Hotmail. Get busy.

> >

> >

>

[Guest guest]

Dear Mark,

Have been thinking of you, and the wonderful support you have from so

many on this list-- those who write and probably many who think of

you, and may not write. Many many good wishes-- and tons of good

advice.

Hope your recovery goes very well, with lots of scd chicken broth

available. As folks have suggested, I too make it and freeze in

portion size containers-- I love to open the freezer and see the

stacks of liquid gold. Hope either you can get some made, or someone

wonderful will do it for you. So simple and healing.

Best wishes,

Ruth

1b.Re: Have to get colon fully removed in next few weeksPosted by:

" Mara Schiffren " alcibiades@... alcibiades500Sun May 23, 2010

6:53 am (PDT)

Hey Mark,

I'm also really sorry to hear your news. And that you have to go

through this right now.

Please stay in touch and let us know how you are doing.

Also, I agree with Jodi, if there is any way you can prepare some SCD

food for while

you are in the hospital, that might help your recovery time from

healing after your

surgery. Although I'm not really sure how it works in the case of

removing the colon -

what the schedule is for resumption of eating - I guess they take it

pretty slowly, given

the givens.

Hope you do as well as possible,

Regards,

Mara

> Hi Mark,

>

> I don't have any advice for you, but I just wanted to say that I'm

really sorry you have to go through this. I think it's great that you

are planning on sticking with SCD after your surgery. I hope all goes

well and you are feeling better soon.

>

> Take care,

>

> Amber

>

>

>>

>> Hi,

>> I was with my gastroenterologist yesterday and its decided i need

surgery. Ive been very unwell for over a year now and my weight has

dropped rapidly in the past couple of months im only 6 and half stone.

Ive tried scd and LDN for a month now but time is against me and im

too sick right now to give the SCD anymore time and hope things get

better, My situation is that no drugs have worked for me in 2 years

and ive been on prednisilone way too long and right now there not even

working to stop my diorreha and weight loss. Its too dangerous to get

such a big operation when my weights low as the risks of complications

are higher and i dont want that. My whole colon and rectum are where

my disease is so they will be fully removed and il be on a stoma bag

for life as it cant be re attached. Its hard to accept but i have no

choice or i will risk as my gastroenterologist said possible death if

i dont get it done. i will continue scd as much as i can but after the

operation il be in h!

> ospital recovering for a few weeks id say and it will be impossible

to eat scd while in there.

>>

>> My hope is that when i recover and gain my weight back i want to

restart SCD and stick to it for life so my chrons does not return in

my small bowel ever.

>>

>> I'd like to know what people think or have they had this happen to

them as i could do with some advise, Thanks Mark

>>

[Guest guest]

As folks have suggested, I too make it and freeze in portion size containers-- I love to open the freezer and see the stacks of liquid gold.Haha me too =) Although, I find it very helpful to freeze broth in ice cube trays, because then after they're frozen you can pop them out and store them in a ziplock. I find this useful because then I can defrost only as many as I need, and I don't have all my containers used up in freezing broth. Peace =)Alyssa 16 yo UC April 2008, dx Sept 2008SCD June 2009 (restarted)Azathioprine 75 mg 1x per dayPrednisone 30 mg 1x per day

[Guest guest]

PJ, the second link I posted was the results of the Penn State Phase II study:

http://download. abstractcentral. com/DDW2010/ myddw/646. html . I hope they

start Phase III soon!

Holly

Crohn's

SCD 12/01/08

> >

> > You could always make your own, that's what I do. I bought 50 mg pills from

alldaychemist.com in India, and mixed them with distilled water to make it " low

dose " . I haven't told my GI yet though, and don't think that I probably will.

Especially with negative articles like this floating around:

http://www.sciencebasedmedicine.org/?p=4997 . However, this abstract is what

keeps me hopeful that LDN will work out:

http://download.abstractcentral.com/DDW2010/myddw/646.html

> >

> > Holly

> > Crohn's

> > SCD 12/01/08

[Guest guest]

I would like to understand more about the;

http://en.wikipedia.org/wiki/Elevated_transaminases

That just resolved according to that abstract.

We're these CD patients with a history of any liver issues?

Interesting..

If anyone has info on this please send it to me

jodah235@...

Thanks!

Jodi

> > >

> > > You could always make your own, that's what I do. I bought 50 mg pills

from alldaychemist.com in India, and mixed them with distilled water to make it

" low dose " . I haven't told my GI yet though, and don't think that I probably

will. Especially with negative articles like this floating around:

http://www.sciencebasedmedicine.org/?p=4997 . However, this abstract is what

keeps me hopeful that LDN will work out:

http://download.abstractcentral.com/DDW2010/myddw/646.html

> > >

> > > Holly

> > > Crohn's

> > > SCD 12/01/08

>

[Guest guest]

Jodi,

The report says transient elevation of transaminases- the key here is

" transient " which means they went up temporarily. This can happen as a result of

different things. Some medications can do this, and sometimes stopping the

medication takes care of the problem. Sometimes a virus can do this too.

Long term liver disease would not cause " transient " elevation, but a more

persistent one.

The assumption here- I think- is that two people in the study had this temporary

phenomenon and it went away on its own without having to stop the LDN.

That's what this looks like to me.

PJ

> > > >

> > > > You could always make your own, that's what I do. I bought 50 mg pills

from alldaychemist.com in India, and mixed them with distilled water to make it

" low dose " . I haven't told my GI yet though, and don't think that I probably

will. Especially with negative articles like this floating around:

http://www.sciencebasedmedicine.org/?p=4997 . However, this abstract is what

keeps me hopeful that LDN will work out:

http://download.abstractcentral.com/DDW2010/myddw/646.html

> > > >

> > > > Holly

> > > > Crohn's

> > > > SCD 12/01/08

> >

>

[Guest guest]

PJ,

I should of been more clear as I understand this and thanks for clarifying.

It's just over time I have seen a few complain and ponder about LDN accumulating

in the liver. I wonder if it's connected.

Jodi

> > > > >

> > > > > You could always make your own, that's what I do. I bought 50 mg pills

from alldaychemist.com in India, and mixed them with distilled water to make it

" low dose " . I haven't told my GI yet though, and don't think that I probably

will. Especially with negative articles like this floating around:

http://www.sciencebasedmedicine.org/?p=4997 . However, this abstract is what

keeps me hopeful that LDN will work out:

http://download.abstractcentral.com/DDW2010/myddw/646.html

> > > > >

> > > > > Holly

> > > > > Crohn's

> > > > > SCD 12/01/08

> > >

> >

>

[Guest guest]

H Jodi,

You're right. I have heard that too. I don't think transient elevation of liver

enzymes that went away without reducing the dose is that, but who knows?

The one thing I did notice about the studies is the relatively short time the

subjects are on LDN compared to some of us here. There may not have been enough

time for liver accumulation. Bihari advocates taking it for a longer time and

many of us are on it longer term.

One study I would like to see is the recommended length of time one needs to be

on it to get the best effect. Sadly- this kind of study is probably a long way

off as we first need preliminary studies to see if and how it works.

It would be so nice if there were large studies and also multicenter studies of

LDN, but without the profit margin, sadly we may not see that. The nice thing

about the Penn State study is that if this works, it may generate more

interest.Drug companies are always looking to create new drugs that work like

old drugs...so they can patent them, and maybe someone out there will do it for

the sake of discovery

I would also love more studies on SCD....oh well. WE are the study...

PJ

> > > > > >

> > > > > > You could always make your own, that's what I do. I bought 50 mg

pills from alldaychemist.com in India, and mixed them with distilled water to

make it " low dose " . I haven't told my GI yet though, and don't think that I

probably will. Especially with negative articles like this floating around:

http://www.sciencebasedmedicine.org/?p=4997 . However, this abstract is what

keeps me hopeful that LDN will work out:

http://download.abstractcentral.com/DDW2010/myddw/646.html

> > > > > >

> > > > > > Holly

> > > > > > Crohn's

> > > > > > SCD 12/01/08

> > > >

> > >

> >

>

[Guest guest]

I should of been more clear as I understand this and thanks for clarifying.

It's just over time I have seen a few complain and ponder about LDN

accumulating in the liver. I wonder if it's connected.

Jodi

Jodi,

I've seen this, too. And I do wonder what else is going on with these

people? Most LDN people are not on SCD or even necessarily on a very

good diet of any kind, and we have no idea what else they might have

done to annoy their livers. And maybe a few just have a weakness

that way as people can with most anything.

[Guest guest]

Hi Jodi,

My liver enzymes were apparently sky high in March, after 3.5 months on LDN.

Could be coincidence, I've had high liver enzymes in the past. But these were

bad enough that my GI ordered an abdominal ultrasound and every liver blood test

known to man. My test a couple weeks ago showed the enzymes were almost normal

(still a little high), but I had stopped LDN for a month. Now that I'm back to 3

mg of LDN, we'll see what happens :-).

Holly

Crohn's

SCD 12/01/08

>

> PJ,

>

> I should of been more clear as I understand this and thanks for clarifying.

> It's just over time I have seen a few complain and ponder about LDN

accumulating in the liver. I wonder if it's connected.

>

> Jodi

[Guest guest]

Holly,

This concerns me because my RUQ seems to get worse on LDN.

It happened last time too. My liver enzymes have always been good only once I

had an issue in an ER situation did it get bad and a couple of other situations

it was slightly elevated.

I wish there was more data about it.

I feel I may go through accumulation in the liver although I am told that LDN is

such a slight amount this is negligible. But I am so sensitive.

I hate it that there can be such a pay off.

I don't think I would stay on it so long term.

I adore LDN though.. really.

Jodi

> >

> > PJ,

> >

> > I should of been more clear as I understand this and thanks for clarifying.

> > It's just over time I have seen a few complain and ponder about LDN

accumulating in the liver. I wonder if it's connected.

> >

> > Jodi

>

[Guest guest]

> Hi Jodi,>> My liver enzymes were apparently sky high in March, after 3.5 months on > LDN. Could be coincidence, I've had high liver enzymes in the past. But > these were bad enough that my GI ordered an abdominal ultrasound and > every liver blood test known to man. My test a couple weeks ago showed > the enzymes were almost normal (still a little high), but I had stopped > LDN for a month. Now that I'm back to 3 mg of LDN, we'll see what > happens :-).>> Holly> Crohn's> SCD 12/01/08With some people -- I'm one -- LDN seems to have a longer half life/sticks around longer in body tissues -- than with other people. I've found that taking milk thistle (and/or the amino acid alpha lipoic acid) helps my liver be more efficient and essentially solves that problem.n >> >>>> PJ,>>>> I should of been more clear as I understand this and thanks for >> clarifying.>> It's just over time I have seen a few complain and ponder about LDN >> accumulating in the liver. I wonder if it's connected.>>>> Jodi>>-- 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]

n,

How interesting. I have a sluggish detox system for sure.

Stuff totally sticks.

I am worried about the ALA as that is used as a chelator too and my mercury

numbers are so high.. My lead numbers are high too just not stratospheric.

Didn't think about Milk Thistle (which for anyone out there is SCD illegal I

have just been on the diet quite a while)

Jodi

> With some people -- I'm one -- LDN seems to have a longer half life/sticks

> around longer in body tissues -- than with other people. I've found that

> taking milk thistle (and/or the amino acid alpha lipoic acid) helps my

> liver be more efficient and essentially solves that problem.

>

> n

[Guest guest]

n, how much ALA do you take a day? What brand?

I tried milk thistle a couple months ago. It didn't go so well. I ended up with

severe pain in the area of my pancreas/biliary tract a week after I started it.

Holly

Crohn's

SCD 12/01/08

>

> > Hi Jodi,

> >

> > My liver enzymes were apparently sky high in March, after 3.5 months on

> > LDN. Could be coincidence, I've had high liver enzymes in the past. But

> > these were bad enough that my GI ordered an abdominal ultrasound and

> > every liver blood test known to man. My test a couple weeks ago showed

> > the enzymes were almost normal (still a little high), but I had stopped

> > LDN for a month. Now that I'm back to 3 mg of LDN, we'll see whathappens

> > :-).

> >

> > Holly

> > Crohn's

> > SCD 12/01/08

>

> With some people -- I'm one -- LDN seems to have a longer half life/sticks

> around longer in body tissues -- than with other people. I've found that

> taking milk thistle (and/or the amino acid alpha lipoic acid) helps my

> liver be more efficient and essentially solves that problem.

>

> n

>