Re: Immuran/LDN/Prednisone and Crohns/ASD

[Guest guest]

FJA: The group of children and adults with whom I

work who have Crohn's (a small group of 9) all

contacted me because they wanted to (or they wanted

their children) to go onto LDN. Several tapered off

of prednisone to take just LDN, but I have not had any

patients who take Immuran or were on it before

starting the LDN. As it is an immunosuppressant there

may be some conflict with LDN, which though considered

an immuno-modulator I found 90% of kids with autism in

my study who took it raised their CD4+ count in 16

weeks, so for that group of cells I would have to call

it primarily an immuno-stimulant or strengthener. Sed

rates are generally going down with the LDN and the

majority are very happy with it.) I would like your

permission to sent your e-mail (no names) to the adult

LDN group where I am sure more will have experience

with both drugs and can answer your question better

than I. My understanding is that most autoimmune

diseases are not due to overacting immune systems but

improperly acting immune systems, so my thrust is to

help the immune system get stronger - I test for food

sensitivities and try to get them to eat foods that do

not inflame the gut (esp milk, wheat and soy), give

them Epicor to help their secretory IgA for protection

of the mucous gut lining, reduce toxic loads, give

LDN, probiotics, Vit D, etc. and test for best

nutrient protocols to also help that process, which I

assume your DAN! doctor is also doing for your

daughter - congratulations on her improvement in the

ASD arena! Let me know if I can forward your post to

yahoo LDN. Dr. JM

--- f_atto wrote:

> My 15 yo daughter has made tremendous strides since

> we bagan seeing

> her DAN dr. She is essentially " recovered " from ASD

> but also has

> Crohns/UC.

>

> We have been taking LDN for about 2 months going up

> from 3mg - 4.5 mg

> over that period. She is currently on 9.5mg of

> Prednisone and 100mg

> of Immuran.

>

> Her latest blood work shows her SED rate at 31 (last

> month was 23 and

> two months ago 33). Her Prometheous Lab tests which

> measure whether

> the level of Immuran is in therapeutic range has

> dropped drastically

> however. The goal is 200. She has been at about 175

> for the last 6

> months, but this month dropped to 116 and her GI is

> panicking wanting

> us to go back up to 15mg of PS and possibly go up on

> the Immuran.

>

> All that we have changed is the LDN, specifically

> the dosage.

>

> Does anyone out there know of an interaction between

> these drugs.

>

> We are also on a cocktail of other typical DAN

> suppliments including

> probiotics, Omegas, vitamins and minerals as well as

> the nasal MB6.

>

> On the ASD side she has done remarkably well. She

> was always high

> functioning but has even stepped it up a notch. Much

> more " there " ,

> more appropriate and on topic.

>

> We are thrilled to have this group out there to help

> and must thank

> all of you esp Dr McCandless for her tireless

> efforts.

>

> I encourage all of you to do as much as you can now

> to hopefully

> avoid the crohns/UC diagnosis later. We got ours

> when she was 13.

>

> Any other advice would be great.

>

> Never give up - never surrender!

>

> FJA

>

>

[Guest guest]

What is a good starting dose for Epicor Jr for a 6yr old? (weight @52lbs)

JAQUELYN MCCANDLESS wrote: FJA: The group of

children and adults with whom I

work who have Crohn's (a small group of 9) all

contacted me because they wanted to (or they wanted

their children) to go onto LDN. Several tapered off

of prednisone to take just LDN, but I have not had any

patients who take Immuran or were on it before

starting the LDN. As it is an immunosuppressant there

may be some conflict with LDN, which though considered

an immuno-modulator I found 90% of kids with autism in

my study who took it raised their CD4+ count in 16

weeks, so for that group of cells I would have to call

it primarily an immuno-stimulant or strengthener. Sed

rates are generally going down with the LDN and the

majority are very happy with it.) I would like your

permission to sent your e-mail (no names) to the adult

LDN group where I am sure more will have experience

with both drugs and can answer your question better

than I. My understanding is that most autoimmune

diseases are not due to overacting immune systems but

improperly acting immune systems, so my thrust is to

help the immune system get stronger - I test for food

sensitivities and try to get them to eat foods that do

not inflame the gut (esp milk, wheat and soy), give

them Epicor to help their secretory IgA for protection

of the mucous gut lining, reduce toxic loads, give

LDN, probiotics, Vit D, etc. and test for best

nutrient protocols to also help that process, which I

assume your DAN! doctor is also doing for your

daughter - congratulations on her improvement in the

ASD arena! Let me know if I can forward your post to

yahoo LDN. Dr. JM

--- f_atto wrote:

> My 15 yo daughter has made tremendous strides since

> we bagan seeing

> her DAN dr. She is essentially " recovered " from ASD

> but also has

> Crohns/UC.

>

> We have been taking LDN for about 2 months going up

> from 3mg - 4.5 mg

> over that period. She is currently on 9.5mg of

> Prednisone and 100mg

> of Immuran.

>

> Her latest blood work shows her SED rate at 31 (last

> month was 23 and

> two months ago 33). Her Prometheous Lab tests which

> measure whether

> the level of Immuran is in therapeutic range has

> dropped drastically

> however. The goal is 200. She has been at about 175

> for the last 6

> months, but this month dropped to 116 and her GI is

> panicking wanting

> us to go back up to 15mg of PS and possibly go up on

> the Immuran.

>

> All that we have changed is the LDN, specifically

> the dosage.

>

> Does anyone out there know of an interaction between

> these drugs.

>

> We are also on a cocktail of other typical DAN

> suppliments including

> probiotics, Omegas, vitamins and minerals as well as

> the nasal MB6.

>

> On the ASD side she has done remarkably well. She

> was always high

> functioning but has even stepped it up a notch. Much

> more " there " ,

> more appropriate and on topic.

>

> We are thrilled to have this group out there to help

> and must thank

> all of you esp Dr McCandless for her tireless

> efforts.

>

> I encourage all of you to do as much as you can now

> to hopefully

> avoid the crohns/UC diagnosis later. We got ours

> when she was 13.

>

> Any other advice would be great.

>

> Never give up - never surrender!

>

> FJA

>

>

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

Yahoo! oneSearch: Finally, mobile search that gives answers, not web links.

[Guest guest]

Dr. McCandless.

Thanks for your promp reply.

Yes of course you may post this anywhere you think would be

beneficial.

In an update. She began a small " flare " on Wed. with cramps and loose

stools. We increased probiotics and gave her activated charcoal with

meals. Last night she slept through the night without any BM., but

went this am. Much firmer but noticible red spots scattered

throughout the stool. She may be pulling out of it on her own

(hopefully). I have read somewhere that sometimes a flare occurs once

you begin LDN. She has been CFGFSF for at least 6 months (only eating

rice, chicken, potatoes, lamb, peeled apples and pears, bananas and

some vegies (all cooked) but is not on Epicor. (should that be

something we should start?) She has just finished a 2 month

Nystatin/Flagyl treatment but the flare began prior to us stopping

the treatment.

I wonder if the LDN is neutralizing both the PS and the Immuran, and

that those in turn are not allowing the LDN to take effect??? I know

that was the early thinking. We are desperate to get her off the PS

(she has been on it for close to 2 years) and hopefully Immuran as

well. Don't tell her GI that though!

There is also talk of Prednisone alternatives, essentially Mega doses

of the typical Antioxidants (C, D, A as well as some flavinoids) I

think Dr. pioneered this. I am also wondering about other

anti inflamitories like Aloe Vera or ???.

I have also been reading about some work at Penn State (by one of Dr.

's colleagues) who is using LDN but only on alternate days with

no decrease in effectiveness...still early on that though. What are

your thoughts on that?

Also, perhaps we should bite the bullet and drop PS more rapidly

than .5mg per week so that it can hopefully " get out of the way " of

the LDN.

I know this is new territiry here but any thoghts would be great.

Again thanks and the best of Luck in Africa.

Again, all the very best and thank you for your tireless work.

FJA

-- In csb-autism-rx , JAQUELYN MCCANDLESS

wrote:

>

> FJA: The group of children and adults with whom I

> work who have Crohn's (a small group of 9) all

> contacted me because they wanted to (or they wanted

> their children) to go onto LDN. Several tapered off

> of prednisone to take just LDN, but I have not had any

> patients who take Immuran or were on it before

> starting the LDN. As it is an immunosuppressant there

> may be some conflict with LDN, which though considered

> an immuno-modulator I found 90% of kids with autism in

> my study who took it raised their CD4+ count in 16

> weeks, so for that group of cells I would have to call

> it primarily an immuno-stimulant or strengthener. Sed

> rates are generally going down with the LDN and the

> majority are very happy with it.) I would like your

> permission to sent your e-mail (no names) to the adult

> LDN group where I am sure more will have experience

> with both drugs and can answer your question better

> than I. My understanding is that most autoimmune

> diseases are not due to overacting immune systems but

> improperly acting immune systems, so my thrust is to

> help the immune system get stronger - I test for food

> sensitivities and try to get them to eat foods that do

> not inflame the gut (esp milk, wheat and soy), give

> them Epicor to help their secretory IgA for protection

> of the mucous gut lining, reduce toxic loads, give

> LDN, probiotics, Vit D, etc. and test for best

> nutrient protocols to also help that process, which I

> assume your DAN! doctor is also doing for your

> daughter - congratulations on her improvement in the

> ASD arena! Let me know if I can forward your post to

> yahoo LDN. Dr. JM

>

> --- f_atto wrote:

>

> > My 15 yo daughter has made tremendous strides since

> > we bagan seeing

> > her DAN dr. She is essentially " recovered " from ASD

> > but also has

> > Crohns/UC.

> >

> > We have been taking LDN for about 2 months going up

> > from 3mg - 4.5 mg

> > over that period. She is currently on 9.5mg of

> > Prednisone and 100mg

> > of Immuran.

> >

> > Her latest blood work shows her SED rate at 31 (last

> > month was 23 and

> > two months ago 33). Her Prometheous Lab tests which

> > measure whether

> > the level of Immuran is in therapeutic range has

> > dropped drastically

> > however. The goal is 200. She has been at about 175

> > for the last 6

> > months, but this month dropped to 116 and her GI is

> > panicking wanting

> > us to go back up to 15mg of PS and possibly go up on

> > the Immuran.

> >

> > All that we have changed is the LDN, specifically

> > the dosage.

> >

> > Does anyone out there know of an interaction between

> > these drugs.

> >

> > We are also on a cocktail of other typical DAN

> > suppliments including

> > probiotics, Omegas, vitamins and minerals as well as

> > the nasal MB6.

> >

> > On the ASD side she has done remarkably well. She

> > was always high

> > functioning but has even stepped it up a notch. Much

> > more " there " ,

> > more appropriate and on topic.

> >

> > We are thrilled to have this group out there to help

> > and must thank

> > all of you esp Dr McCandless for her tireless

> > efforts.

> >

> > I encourage all of you to do as much as you can now

> > to hopefully

> > avoid the crohns/UC diagnosis later. We got ours

> > when she was 13.

> >

> > Any other advice would be great.

> >

> > Never give up - never surrender!

> >

> > FJA

> >

> >

>

[Guest guest]

Hi.. you might consider asking your doctor about changing to a

systemic antifungal which Nystatin is not. You have have yeast issues

due to this. Just a thought!

Moderator

> >

> > > My 15 yo daughter has made tremendous strides since

> > > we bagan seeing

> > > her DAN dr. She is essentially " recovered " from ASD

> > > but also has

> > > Crohns/UC.

> > >

> > > We have been taking LDN for about 2 months going up

> > > from 3mg - 4.5 mg

> > > over that period. She is currently on 9.5mg of

> > > Prednisone and 100mg

> > > of Immuran.

> > >

> > > Her latest blood work shows her SED rate at 31 (last

> > > month was 23 and

> > > two months ago 33). Her Prometheous Lab tests which

> > > measure whether

> > > the level of Immuran is in therapeutic range has

> > > dropped drastically

> > > however. The goal is 200. She has been at about 175

> > > for the last 6

> > > months, but this month dropped to 116 and her GI is

> > > panicking wanting

> > > us to go back up to 15mg of PS and possibly go up on

> > > the Immuran.

> > >

> > > All that we have changed is the LDN, specifically

> > > the dosage.

> > >

> > > Does anyone out there know of an interaction between

> > > these drugs.

> > >

> > > We are also on a cocktail of other typical DAN

> > > suppliments including

> > > probiotics, Omegas, vitamins and minerals as well as

> > > the nasal MB6.

> > >

> > > On the ASD side she has done remarkably well. She

> > > was always high

> > > functioning but has even stepped it up a notch. Much

> > > more " there " ,

> > > more appropriate and on topic.

> > >

> > > We are thrilled to have this group out there to help

> > > and must thank

> > > all of you esp Dr McCandless for her tireless

> > > efforts.

> > >

> > > I encourage all of you to do as much as you can now

> > > to hopefully

> > > avoid the crohns/UC diagnosis later. We got ours

> > > when she was 13.

> > >

> > > Any other advice would be great.

> > >

> > > Never give up - never surrender!

> > >

> > > FJA

> > >

> > >

> >

>

[Guest guest]

I have everyone on Epicor (including myself, why not

help the gut be as healthy as possible; the mucous

layer is important to protect the lining from pathogen

invasion. There are no set rules for dosage, but

generally 5 and under, one 150mg per day, over 5, 2 or

3 daily, over 60# or so, one 500mg (adult size). I

get it from VRP and their price has gone down from

when it was first introduced, making it quite

affordable. Dr. JM

--- angie carter wrote:

> What is a good starting dose for Epicor Jr for a 6yr

> old? (weight @52lbs)

>

> JAQUELYN MCCANDLESS wrote:

> FJA: The group of children and adults with

> whom I

> work who have Crohn's (a small group of 9) all

> contacted me because they wanted to (or they wanted

> their children) to go onto LDN. Several tapered off

> of prednisone to take just LDN, but I have not had

> any

> patients who take Immuran or were on it before

> starting the LDN. As it is an immunosuppressant

> there

> may be some conflict with LDN, which though

> considered

> an immuno-modulator I found 90% of kids with autism

> in

> my study who took it raised their CD4+ count in 16

> weeks, so for that group of cells I would have to

> call

> it primarily an immuno-stimulant or strengthener.

> Sed

> rates are generally going down with the LDN and the

> majority are very happy with it.) I would like your

> permission to sent your e-mail (no names) to the

> adult

> LDN group where I am sure more will have experience

> with both drugs and can answer your question better

> than I. My understanding is that most autoimmune

> diseases are not due to overacting immune systems

> but

> improperly acting immune systems, so my thrust is to

> help the immune system get stronger - I test for

> food

> sensitivities and try to get them to eat foods that

> do

> not inflame the gut (esp milk, wheat and soy), give

> them Epicor to help their secretory IgA for

> protection

> of the mucous gut lining, reduce toxic loads, give

> LDN, probiotics, Vit D, etc. and test for best

> nutrient protocols to also help that process, which

> I

> assume your DAN! doctor is also doing for your

> daughter - congratulations on her improvement in the

> ASD arena! Let me know if I can forward your post to

> yahoo LDN. Dr. JM

>

> --- f_atto wrote:

>

> > My 15 yo daughter has made tremendous strides

> since

> > we bagan seeing

> > her DAN dr. She is essentially " recovered " from

> ASD

> > but also has

> > Crohns/UC.

> >

> > We have been taking LDN for about 2 months going

> up

> > from 3mg - 4.5 mg

> > over that period. She is currently on 9.5mg of

> > Prednisone and 100mg

> > of Immuran.

> >

> > Her latest blood work shows her SED rate at 31

> (last

> > month was 23 and

> > two months ago 33). Her Prometheous Lab tests

> which

> > measure whether

> > the level of Immuran is in therapeutic range has

> > dropped drastically

> > however. The goal is 200. She has been at about

> 175

> > for the last 6

> > months, but this month dropped to 116 and her GI

> is

> > panicking wanting

> > us to go back up to 15mg of PS and possibly go up

> on

> > the Immuran.

> >

> > All that we have changed is the LDN, specifically

> > the dosage.

> >

> > Does anyone out there know of an interaction

> between

> > these drugs.

> >

> > We are also on a cocktail of other typical DAN

> > suppliments including

> > probiotics, Omegas, vitamins and minerals as well

> as

> > the nasal MB6.

> >

> > On the ASD side she has done remarkably well. She

> > was always high

> > functioning but has even stepped it up a notch.

> Much

> > more " there " ,

> > more appropriate and on topic.

> >

> > We are thrilled to have this group out there to

> help

> > and must thank

> > all of you esp Dr McCandless for her tireless

> > efforts.

> >

> > I encourage all of you to do as much as you can

> now

> > to hopefully

> > avoid the crohns/UC diagnosis later. We got ours

> > when she was 13.

> >

> > Any other advice would be great.

> >

> > Never give up - never surrender!

> >

> > FJA

> >

> >

>

>

>

>

>

>

> ---------------------------------

> Yahoo! oneSearch: Finally, mobile search that gives

> answers, not web links.

>

> [Non-text portions of this message have been

> removed]

>

>

[Guest guest]

hi...my co worker follows elaine gotshall's book.. sorry if I mispelled

it... she is medication free.. she has crohns disease.. she works with a

gasterinterologist.. A DO.. and he tested her blood for metals and she was high

in

mercury and arsenic.. he plans to naturally chelate her.. He is a big believer

in the gut /brain...Lia

************************************** See what's new at http://www.aol.com

[Guest guest]

I would like to ask my DAN Dr. about Epicor for my daughter who

is " recovered " . But it seems that it is an immune booster as

well. IF I am correct in that assumption, should we be avoiding it,

as we avoid LDN, if we are taking immunosuppresants (Prednisone and

Immuran) for my daughter's Crohns/UC?

Thanks

FJA

> >

> > > My 15 yo daughter has made tremendous strides

> > since

> > > we bagan seeing

> > > her DAN dr. She is essentially " recovered " from

> > ASD

> > > but also has

> > > Crohns/UC.

> > >

> > > We have been taking LDN for about 2 months going

> > up

> > > from 3mg - 4.5 mg

> > > over that period. She is currently on 9.5mg of

> > > Prednisone and 100mg

> > > of Immuran.

> > >

> > > Her latest blood work shows her SED rate at 31

> > (last

> > > month was 23 and

> > > two months ago 33). Her Prometheous Lab tests

> > which

> > > measure whether

> > > the level of Immuran is in therapeutic range has

> > > dropped drastically

> > > however. The goal is 200. She has been at about

> > 175

> > > for the last 6

> > > months, but this month dropped to 116 and her GI

> > is

> > > panicking wanting

> > > us to go back up to 15mg of PS and possibly go up

> > on

> > > the Immuran.

> > >

> > > All that we have changed is the LDN, specifically

> > > the dosage.

> > >

> > > Does anyone out there know of an interaction

> > between

> > > these drugs.

> > >

> > > We are also on a cocktail of other typical DAN

> > > suppliments including

> > > probiotics, Omegas, vitamins and minerals as well

> > as

> > > the nasal MB6.

> > >

> > > On the ASD side she has done remarkably well. She

> > > was always high

> > > functioning but has even stepped it up a notch.

> > Much

> > > more " there " ,

> > > more appropriate and on topic.

> > >

> > > We are thrilled to have this group out there to

> > help

> > > and must thank

> > > all of you esp Dr McCandless for her tireless

> > > efforts.

> > >

> > > I encourage all of you to do as much as you can

> > now

> > > to hopefully

> > > avoid the crohns/UC diagnosis later. We got ours

> > > when she was 13.

> > >

> > > Any other advice would be great.

> > >

> > > Never give up - never surrender!

> > >

> > > FJA

> > >

> > >

> >

> >

> >

> >

> >

> >

> > ---------------------------------

> > Yahoo! oneSearch: Finally, mobile search that gives

> > answers, not web links.

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

[Guest guest]

All the literature on Epicor calls it an

immunomodulator, not a booster. I have not had

experience with anyone taking it with Immuran; I'm

afraid there may not be anyone who knows the answer to

your question. If you do learn anything, please let

me know. I personally have had such great success

with both kids and adults (though not a huge group)

that my hope is that she can get off the steroids and

the suppressants and start LDN and Epicor. Dr. JM

--- f_atto wrote:

> I would like to ask my DAN Dr. about Epicor for my

> daughter who

> is " recovered " . But it seems that it is an immune

> booster as

> well. IF I am correct in that assumption, should we

> be avoiding it,

> as we avoid LDN, if we are taking immunosuppresants

> (Prednisone and

> Immuran) for my daughter's Crohns/UC?

>

> Thanks

>

> FJA

>

>

> > >

> > > > My 15 yo daughter has made tremendous strides

> > > since

> > > > we bagan seeing

> > > > her DAN dr. She is essentially " recovered "

> from

> > > ASD

> > > > but also has

> > > > Crohns/UC.

> > > >

> > > > We have been taking LDN for about 2 months

> going

> > > up

> > > > from 3mg - 4.5 mg

> > > > over that period. She is currently on 9.5mg of

> > > > Prednisone and 100mg

> > > > of Immuran.

> > > >

> > > > Her latest blood work shows her SED rate at 31

> > > (last

> > > > month was 23 and

> > > > two months ago 33). Her Prometheous Lab tests

> > > which

> > > > measure whether

> > > > the level of Immuran is in therapeutic range

> has

> > > > dropped drastically

> > > > however. The goal is 200. She has been at

> about

> > > 175

> > > > for the last 6

> > > > months, but this month dropped to 116 and her

> GI

> > > is

> > > > panicking wanting

> > > > us to go back up to 15mg of PS and possibly go

> up

> > > on

> > > > the Immuran.

> > > >

> > > > All that we have changed is the LDN,

> specifically

> > > > the dosage.

> > > >

> > > > Does anyone out there know of an interaction

> > > between

> > > > these drugs.

> > > >

> > > > We are also on a cocktail of other typical DAN

> > > > suppliments including

> > > > probiotics, Omegas, vitamins and minerals as

> well

> > > as

> > > > the nasal MB6.

> > > >

> > > > On the ASD side she has done remarkably well.

> She

> > > > was always high

> > > > functioning but has even stepped it up a

> notch.

> > > Much

> > > > more " there " ,

> > > > more appropriate and on topic.

> > > >

> > > > We are thrilled to have this group out there

> to

> > > help

> > > > and must thank

> > > > all of you esp Dr McCandless for her tireless

> > > > efforts.

> > > >

> > > > I encourage all of you to do as much as you

> can

> > > now

> > > > to hopefully

> > > > avoid the crohns/UC diagnosis later. We got

> ours

> > > > when she was 13.

> > > >

> > > > Any other advice would be great.

> > > >

> > > > Never give up - never surrender!

> > > >

> > > > FJA

> > > >

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > ---------------------------------

> > > Yahoo! oneSearch: Finally, mobile search that

> gives

> > > answers, not web links.

>

=== message truncated ===

[Guest guest]

Usually blood is not good indicator... if she is showing high in

blood testing there may be recent exposure and she needs to check

this.

>

> hi...my co worker follows elaine gotshall's book.. sorry if I

mispelled

> it... she is medication free.. she has crohns disease.. she works

with a

> gasterinterologist.. A DO.. and he tested her blood for metals and

she was high in

> mercury and arsenic.. he plans to naturally chelate her.. He is a

big believer

> in the gut /brain...Lia

>

>

>

> ************************************** See what's new at

http://www.aol.com

>

>

>