Crohns

[Guest guest]

Hi again Everyone, I was just wondering if someone w/ Crohns can

please answer a question for me. My daughters abdominal pains have

lessened but she still gets them. She has ulcers along her colon. Do

you think she is healing because her pains are less frequent? I am just

hoping that she IS healing and that we just need to wait for more time

to pass. I just cant wait until she is without pain. I know that noone

can say for sure, just I'd love for you to let me know what you think.

she started taking LDN 10 days ago - (4.5) Thank you so much, ette J

[Guest guest]

ette, it's hard to say, but to make it easier for her, you could try to let her

drink juices, water, green tea and other vegetable juices for a week. It's

hard to do it, but her colon would heal faster and this _could_ probably

help LDN to work better. Avoid all kind of raw vegetables and fruits. Also

avoid meat. If she has used the SCD diet you know the first week and the

food that is accepted during it. Soups made on boiled chicken and a few

mild spices.

Make sure there are not too much fibers in the juices. Maybe avoid

citrus and orange juice to not let her intestines suffer due to the acids.

As I've mentioned earlier the intestines and the colon need to rest for

a while. Good luck!

Ingrid

[low dose naltrexone] CrohnsHi again Everyone, I was just wondering if someone w/ Crohns can please answer a question for me. My daughters abdominal pains have lessened but she still gets them. She has ulcers along her colon. Do you think she is healing because her pains are less frequent? I am just hoping that she IS healing and that we just need to wait for more time to pass. I just cant wait until she is without pain. I know that noone can say for sure, just I'd love for you to let me know what you think.she started taking LDN 10 days ago - (4.5) Thank you so much, ette J

[Guest guest]

Hi Maestro,I am currently working on getting LDN through an intern in Iowa city who works with alternative therapies. I found her through a compounding pharmicist who makes LDN for her MS patients. It may end up being a dead end so please send me the info. about the MO doctor. We can drive down in about 8 hours, and vacation while we are there if need be:)Thanksamaestro4u <amaestro4u@...> wrote: Hi , I am new here, but just became aware of a doctor in St. Louis, MO who will prescribe LDN. I

realize, depending on where you are in Iowa, that this would be a 5 to 10 hour drive for you. Just wanted to throw that out. Feel free to email me! maestro > > Hi all, > I am looking for a physician to prescribe LDN for my 15 year old son > in the Midwest (We live in Iowa but I would happily travel to get the > prescription). Anyone out there having any luck? My son was recently > dropped from the Humira pediatric study due to severe site reactions. > He has had small bowel crohns for about 5 years and nothing we have > tried keeps him in remission. We have remicaid in our back pocket but > for many reasons I would prefer to try the LDN first. Our Mayo clinic > Doc says he would not prescribe it but would

continue to monitor my > son if we find someone else to prescribe. Sounds like a cop out to me. > Thanks > >

[Guest guest]

Hi Fritz,I have read Dr. 's first study results and have actually visited with her study coordinator about the adolescent study. I asked her if Dr. would prescribe for us off label if we came out for her to meet and examine my son. I'm waiting to hear back from them but appreciate Dr. 's direct email!!!ThanksFritz Bell <fsbx@...> wrote: Apparantly I cannot Post another email. Email me if you want more info.

[Guest guest]

,

Would you please keep the group posted when you hear from Dr. ?

I'm very interested in LDN for my teenage son. His doctor had a couple

adult patients starting her study, but he wasn't comfortable prescribing

LDN at this point. An adolescent study might be just the ticket to

convince him.

Thank you!

Sally

boyle wrote:

> Hi Fritz,

> I have read Dr. 's first study results and have actually visited

> with her study coordinator about the adolescent study. I asked her if

> Dr. would prescribe for us off label if we came out for her to

> meet and examine my son. I'm waiting to hear back from them but

> appreciate Dr. 's direct email!!!

> Thanks

>

>

> *//*

>

>

>

>

[Guest guest]

Hi and amaestro4you,

you can also ask in here for a list of doctors doing rx's in the actual area! :-)

Ingrid

Re: [low dose naltrexone] Re: crohns

Hi Fritz,I have read Dr. 's first study results and have actually visited with her study coordinator about the adolescent study. I asked her if Dr. would prescribe for us off label if we came out for her to meet and examine my son. I'm waiting to hear back from them but appreciate Dr. 's direct email!!!ThanksFritz Bell <fsbx@...> wrote:

Apparantly I cannot Post another email. Email me if you want more info.

[Guest guest]

Hi Sally,I wasn't getting anywhere in Iowa and had not heard back from Dr. , so one of the other group members gave me the name of Dr. Terry Grossman in Colorado. He will do phone consultations and prescribe for you even if you are out of state. We have a phone consultation tomorrow. Google his name and go to his web site to get the phone number.Good Luck I'll let you know how we do.Beatty <beatty@...> wrote: , Would you please keep the group posted when you hear from Dr. ? I'm

very interested in LDN for my teenage son. His doctor had a couple adult patients starting her study, but he wasn't comfortable prescribing LDN at this point. An adolescent study might be just the ticket to convince him. Thank you! Sally boyle wrote: > Hi Fritz, > I have read Dr. 's first study results and have actually visited > with her study coordinator about the adolescent study. I asked her if > Dr. would prescribe for us off label if we came out for her to > meet and examine my son. I'm waiting to hear back from them but > appreciate Dr. 's direct email!!! > Thanks > > > *//* > > > >

[Guest guest]

,

Thanks for the update.

Good luck with the consultation!!! I'll be very interested to hear how

things go.

I don't recall if you'd mentioned in group posts if your son is

currently on other meds.

Our big dilemma is that my son started Remicade in April and they say if

you are off Remicade " too long " (?), you may either have a severe

allergic reaction if you try to get back on it, or it won't work. So

given that you have to be off Remicade for 50 days before starting LDN,

and the interval between Remicade infusions is 8 weeks, I worry if we'd

know soon enough if LDN works or not to be able to get back on Remicade

if worst case LDN didn't work. Know what I mean? We have an appt with

the IBD doctor next week and I'm going to keep asking about LDN, esp

with Dr. doing an adolescent study now.

Take care.

Sally

boyle wrote:

> Hi Sally,

> I wasn't getting anywhere in Iowa and had not heard back from Dr.

> , so one of the other group members gave me the name of Dr. Terry

> Grossman in Colorado. He will do phone consultations and prescribe

> for you even if you are out of state. We have a phone consultation

> tomorrow. Google his name and go to his web site to get the phone number.

> Good Luck I'll let you know how we do.

>

>

> */Beatty <beatty@...>/* wrote:

>

> ,

>

> Would you please keep the group posted when you hear from Dr. ?

> I'm very interested in LDN for my teenage son. His doctor had a

> couple

> adult patients starting her study, but he wasn't comfortable

> prescribing

> LDN at this point. An adolescent study might be just the ticket to

> convince him.

>

> Thank you!

> Sally

>

> boyle wrote:

>

> > Hi Fritz,

> > I have read Dr. 's first study results and have actually

> visited

> > with her study coordinator about the adolescent study. I asked

> her if

> > Dr. would prescribe for us off label if we came out for

> her to

> > meet and examine my son. I'm waiting to hear back from them but

> > appreciate Dr. 's direct email!!!

> > Thanks

> >

> >

> > *//*

> >

> >

> >

> >

>

>

>

[Guest guest]

, I just emailed you. Just making sure you received the doctor's

name that I have in St. Louis.

maestro

> >

> > Hi all,

> > I am looking for a physician to prescribe LDN for my 15 year old son

> > in the Midwest (We live in Iowa but I would happily travel to get the

> > prescription). Anyone out there having any luck? My son was

recently

> > dropped from the Humira pediatric study due to severe site reactions.

> > He has had small bowel crohns for about 5 years and nothing we have

> > tried keeps him in remission. We have remicaid in our back

pocket but

> > for many reasons I would prefer to try the LDN first. Our Mayo clinic

> > Doc says he would not prescribe it but would continue to monitor my

> > son if we find someone else to prescribe. Sounds like a cop out to

> me.

> > Thanks

> >

> >

>

[Guest guest]

Dear Sally

From the "Norwegian" (Crohn's, Arthritis and Psoriasis)

I've seen your post several times where you say that someone told you that "your son can not stay off Remicade for too long" or he may have severe allergy-reactions when re-attempt treatment - WELL - I was off Remicade for ALMOST A YEAR (feb. 2006 - jan. 2007) when moving from Denmark to Norway due to the norwegian gastros who wanted me to try Asacol and Zalazopyrine first (I didn't tolerate any of those) - though my danish file showed that I HAD BEEN TREATED with Remicade and 6MP till then - but Remicade is EXPENSIVE though we here in Norway and Denmark get this for FREE - it's ALL payed by our social security system - ooops - wandering from uor topic (sorry) As I said - I was off Remicade for almost a year, got back on it in jan. 2007 (and 6MP) and had ABSOLUTELY NO ADVERSE REACTIONS to this - this was before knowing about LDN - and I must say, that Remicade has been OF GREAT HELP to me, as it gave me quite some relief . To end this story - my situation is currently this: I cancelled 6MP 3 weeks ago, is still on Remicade AND LDN - and for me this works GREAT - skipping 6MP seem to be what did the trick (as I had no effect of LDN before that) - I DO KNOW that some advokates that one can not take LDN and Remicade concurrent, because the one is depressing the immune-system, the other is enhancing it - the two, so to speak, cancel out each other - to my oppinion this is TO SIMPLIFY a very complex immune-system beyond reason (like saying that sugar will cancel out winegar = no taste) - IT'S MUCH MORE COMPLICATED than this, and no one really KNOWS - conclusions based on guesswork, theories and assumptions are PLENTY in this forum, again because NO ONE REALLY KNOWS - this is the culpritt in all this - because WE REALLY WANT TO KNOW FACTS - for now we can only share experiences - and above is MY experience - this, so far, WORKS FINE FOR ME, and the mext step will (of course) be to quit Remicade when I feel it SAFE TO DO SO.

IF MY experience with Remicade versus LDN is valid for your son too, your dilemma MIGHT NOT exist - you may try LDN and continue Remicade for your son, at least no adverse reactions seem to occure (other than the sleep-disturbance thing).

Just to underline: This is MY experience, and it may fit other "Crohnnies", or it MAY NOT )))

My best wishes for your son

[Guest guest]

Hi Beatty,Jon has been on pentasa, immuran, and was most recently dropped from the pediatric humira study. He had severe site reactions at the injection site and as with all the other drugs he has been on it was losing it's effectiveness. I received an email from Dr. today... She offered to speak with my family practitioner about the pediatric study she is conducting right now. I'm passing along her phone number so your doctor can visit with her about it. If the kids in the study weigh at least 45 kilograms she is giving 4.5 milligrams of LDN. Good luck with your doctor. Dr. 's number is 1-800-233-4082.Beatty <beatty@...> wrote: , Thanks for the update. Good luck with the consultation!!! I'll be very interested to hear how things go. I don't recall if you'd mentioned in group posts if your son is currently on other meds. Our big dilemma is that my son started Remicade in April and they say if you are off Remicade "too long" (?), you may either have a severe allergic reaction if you try to get back on it, or it won't work. So given that you have to be off Remicade for 50 days before starting LDN, and the interval between Remicade infusions is 8 weeks, I worry if we'd know soon enough if LDN works or not to be able to get back on Remicade if worst case LDN didn't work. Know what I mean? We have an appt with the IBD doctor next week and I'm going to keep asking about LDN, esp

with Dr. doing an adolescent study now. Take care. Sally boyle wrote: > Hi Sally, > I wasn't getting anywhere in Iowa and had not heard back from Dr. > , so one of the other group members gave me the name of Dr. Terry > Grossman in Colorado. He will do phone consultations and prescribe > for you even if you are out of state. We have a phone consultation > tomorrow. Google his name and go to his web site to get the phone number. > Good Luck I'll let you know how we do. > > > */Beatty <beattyzbzoom (DOT) net>/* wrote: > > , > > Would you please keep the group posted when you hear from Dr. ? > I'm very interested in LDN for my teenage son. His doctor had a > couple > adult patients starting her study, but he wasn't

comfortable > prescribing > LDN at this point. An adolescent study might be just the ticket to > convince him. > > Thank you! > Sally > > boyle wrote: > > > Hi Fritz, > > I have read Dr. 's first study results and have actually > visited > > with her study coordinator about the adolescent study. I asked > her if > > Dr. would prescribe for us off label if we came out for > her to > > meet and examine my son. I'm waiting to hear back from them but > > appreciate Dr. 's direct email!!! > > Thanks > > > > > > *//* > > > > > > > > > > >

[Guest guest]

GUNN - i thought about the same thing!! ANYTHING IS POSSIBLE!! how can it be proven, unless he stops on & continues the other & takes a chance for another flare-up? either stop the LDN or stop remicade - WHAT A CHOICE!!

marshiris@...Get trade secrets for amazing burgers. Watch "Cooking with Tyler Florence" on AOL Food.

[Guest guest]

,

Thanks for the update and info.

Sounds like Dr. is a wonderful person. We will definitely pursue

this, esp in light of the recent post re Remicade and cancer risk.

Hope everything goes well with Jon and LDN provides the answer he needs.

Sally

boyle wrote:

> Hi Beatty,

> Jon has been on pentasa, immuran, and was most recently dropped from

> the pediatric humira study. He had severe site reactions at the

> injection site and as with all the other drugs he has been on it was

> losing it's effectiveness. I received an email from Dr.

> today... She offered to speak with my family practitioner about the

> pediatric study she is conducting right now. I'm passing along her

> phone number so your doctor can visit with her about it. If the kids

> in the study weigh at least 45 kilograms she is giving 4.5 milligrams

> of LDN. Good luck with your doctor. Dr. 's number is

> 1-800-233-4082.

>

>

> */Beatty <beatty@...>/* wrote:

>

> ,

>

> Thanks for the update.

> Good luck with the consultation!!! I'll be very interested to hear

> how

> things go.

> I don't recall if you'd mentioned in group posts if your son is

> currently on other meds.

> Our big dilemma is that my son started Remicade in April and they

> say if

> you are off Remicade " too long " (?), you may either have a severe

> allergic reaction if you try to get back on it, or it won't work. So

> given that you have to be off Remicade for 50 days before starting

> LDN,

> and the interval between Remicade infusions is 8 weeks, I worry if

> we'd

> know soon enough if LDN works or not to be able to get back on

> Remicade

> if worst case LDN didn't work. Know what I mean? We have an appt with

> the IBD doctor next week and I'm going to keep asking about LDN, esp

> with Dr. doing an adolescent study now.

>

> Take care.

> Sally

>

> boyle wrote:

>

> > Hi Sally,

> > I wasn't getting anywhere in Iowa and had not heard back from Dr.

> > , so one of the other group members gave me the name of Dr.

> Terry

> > Grossman in Colorado. He will do phone consultations and prescribe

> > for you even if you are out of state. We have a phone consultation

> > tomorrow. Google his name and go to his web site to get the

> phone number.

> > Good Luck I'll let you know how we do.

> >

> >

> > */Beatty <beatty@... <mailto:beatty%40zbzoom.net>>/* wrote:

> >

> > ,

> >

> > Would you please keep the group posted when you hear from Dr. ?

> > I'm very interested in LDN for my teenage son. His doctor had a

> > couple

> > adult patients starting her study, but he wasn't comfortable

> > prescribing

> > LDN at this point. An adolescent study might be just the ticket to

> > convince him.

> >

> > Thank you!

> > Sally

> >

> > boyle wrote:

> >

> > > Hi Fritz,

> > > I have read Dr. 's first study results and have actually

> > visited

> > > with her study coordinator about the adolescent study. I asked

> > her if

> > > Dr. would prescribe for us off label if we came out for

> > her to

> > > meet and examine my son. I'm waiting to hear back from them but

> > > appreciate Dr. 's direct email!!!

> > > Thanks

> > >

> > >

> > > *//*

> > >

> > >

> > >

> > >

> >

> >

> >

>

>

>

[Guest guest]

Hi guys,

I am confused. I thought you could not use Remicade and LDN simultaneously???

Kathy DGet trade secrets for amazing burgers. Watch "Cooking with Tyler Florence" on AOL Food.

[Guest guest]

I'm hoping can lend some insight into those possible scenarios by

telling us if he feels better with the Remicade/LDN combo than just

Remicade alone. Wouldn't that indicate any improvement compared to

Remicade alone is due to LDN? (Although I realize this doesn't exactly

follow the scientific method my daughter studied in 7th grade this year

;-) ) Then the next question I think would be what if Remicade was

taken out of the picture?

Sally

Gunn Dybfest wrote:

> Just my two cents: what if Remicade is working 100 % for , and

> LDN is cancelled out? There is also a possibility that LDN is working,

> but not Remicade? Or may be 50 - 50 %?

>

>

> Ingrid

>

>

>

>

[Guest guest]

That had been my understanding after calling Skip's and hearing that you

should be off Remicade for 50 days before starting LDN.

is sharing his experience of having used them together in response

to my concerns about getting off Remicade to start LDN, and what if LDN

didn't work and " too much " time had gone by to get back on Remicade (as

doctors have said allergic reactions can occur if you're off Remicade

" too long " between infusions.) He clearly says this is only his

experience and he is not trying to provide advice - just letting us know

what has happened with him.

Sally

KatheeLouD@... wrote:

> *Hi guys,*

> **

> *I am confused. I thought you could _/not use Remicade/_ and LDN

> simultaneously???*

> **

>

> **

> *Kathy D*

>

>

>

>

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

> Get trade secrets for amazing burgers. Watch " Cooking with Tyler

> Florence " on AOL Food

> <http://food.aol.com/tyler-florence?video=4? & NCID=aolfod00030000000002>.

>

[Guest guest]

· Remicade - Called Skip's Pharmacy at the suggestion of people in this group, and the pharmacist there told me you have to be off Remicade for 50 days before starting LDN. Since the two meds have opposing effects on the immune system, LDN won't work while on Remicade. http://www.skipspha rmacy.com/

Hugs & Blessings,

Crystal

LDN_Users Group Owner

Diagnosed November 2004 with Secondary Progressive MS, Transverse Myelitis and an Advocate for LDN!! 2 years & 9 months on LDN with Skip's Pharmacy.....

Crystal's MS,TM & LDN Website

Crystal's LDN Gift Shop

Crystal's LDN Support Group

Skip's Compounding Pharmacy

LDN Website

Re: [low dose naltrexone] Re: crohns

Hi guys,

I am confused. I thought you could not use Remicade and LDN simultaneously? ??

Kathy D

Get trade secrets for amazing burgers. Watch "Cooking with Tyler Florence" on AOL Food.

[Guest guest]

HI Sally/Gunn

SALLY got it!! - I believe that I now CAN DISTINGUISH between

positive effects of Remicade and LDN - as I have recieved Remicade on

and off for 3 years(approx. 20 infusions) - Imuran since 2002 (was

off both Imuran and Remicade major part of 2006) - over the years I

have also intermittend stopped 6MP as I WANTED TO ged rid of this

poisonous drug (but inflammation ALWAYS increased) - I KNOW THE

PATTERN and the " normal cycle " of Remicade +/- Imuran (100mg/day)

treatment - for a 8 week cycle it has been this way EVERY TIME: After

infusion - 2-3 days of " getting on top " , then about 4 weeks of " the

best I can be " but NOT PERFECT - still frequent (but far less)

bowelmovements, some joint aking, psoriasis unchanged - after this,

the next 3-4 weeks, all symptoms of an active Crohn's will slowly,

but steady grow in intensity - the last 10 days ALWAYS being QUITE

AWFULL (most of all SEVERE abdominal pain) - SO NOW - ON LDN (and

Remicade but no 6MP) this pattern has changed SIGNIFICANTLY - if not

perfect, then MUCH MUCH BETTER - joint pain is almost GONE (some

small relapses here and there for a day or two max, and far less

severe) no diarrea, has FOR THE FIRST TIME in a DEKADE experienced a

NORMAL, FORMED STOOL (though it was actually quite painfull, as

my " system " is not use to pass such " matter " - but POSITIVE anyway) -

my belly-circumference has shrunk about 3 inches (less oedema/gut-

inflammation) and the psoriasis (on my feet) has diminished

substatially - I've taken photos to document the latter. Some, before

this, PERMANENT Herpes-simplex-like " cold sores " (Crohn's granuloma)

inside the rim of my nostrils has gone COMPLETELY. My energy-level

has incresed ten-fold. So ALL IN ALL I see a LOT OF IMPROVEMENTS -

and (for me) it can ONLY be due to LDN - period!!!

Hoping this MIRACLE will continue, I WILL QUIT Remicade - IF I the

days before next Remicade-infusion (ultimo june) are feeling " on top "

I will cancel this appointment - IF NOT, I will take it (as it is

IMPORTANT to keep inflammation as low as possible to reduce intestine-

scarring and possible new abscesses) - and hope for further

improvement through next period - I have seen that LDN and Remicade

is working side by side - LDN IMPROVING Remicade treatment - FOR ME

this is the truth - MAY BE it is for other's too.

I have ONE SINGLE DRAWBACK: In 2001 an anal abscess devolped into a

fistula - this was partially and surgically removed in 2005 - the

rest is (about 1/2 inch) still present and drained by a double Seton-

wire looped through the channel (PEST!!!)This area is PERMANENTLY

inflamed with phatological bacteries (though reduced somewhat after

taking LDN)- the Seton-wire irritates (intensionally) the fistula in

order to keep it open, tehereby (hopefully) not forming a new

abscess - this MUST keep my immune-system alert to some degree,

raising TNF and CRP no matter what - I have applied for further

surgery to see if anything more can be done - I will NOT go

into " total remision " as long as this " PEST " is active!!!

Other medication: Teveten comp. (Eprosartan mesylate 600mg, and the

diuretic, Hydrochlorothiazide 12,5mg) for hypertension.

Supplements: 6 grams of fishoil every day, aminochelated zinc 50mg, 1

standard multivitamin tablet.

Avoid: Nothing but red meat with a lot of fat.

Dieting: Been there, done that - for 3 years - no dairy, no soy, no

gluten, no sugar, low carb - no significant results, as there was

absolutely NO continuity to what i tolerated or not. Has been tested

for several phatogens without result(exept one occation in 1995 where

i suffered from a severe salmonella-infection from eggs).

A LOT of information about ME ))

Have a nice day...

>

> > Just my two cents: what if Remicade is working 100 % for ,

and

> > LDN is cancelled out? There is also a possibility that LDN is

working,

> > but not Remicade? Or may be 50 - 50 %?

> >

> >

> > Ingrid

> >

> >

> >

> >

>

[Guest guest]

HI Sally/Gunn

SALLY got it!! - I believe that I now CAN DISTINGUISH between

positive effects of Remicade and LDN - as I have recieved Remicade on

and off for 3 years(approx. 20 infusions) - Imuran since 2002 (was

off both Imuran and Remicade major part of 2006) - over the years I

have also intermittend stopped 6MP as I WANTED TO ged rid of this

poisonous drug (but inflammation ALWAYS increased) - I KNOW THE

PATTERN and the " normal cycle " of Remicade +/- Imuran (100mg/day)

treatment - for a 8 week cycle it has been this way EVERY TIME: After

infusion - 2-3 days of " getting on top " , then about 4 weeks of " the

best I can be " but NOT PERFECT - still frequent (but far less)

bowelmovements, some joint aking, psoriasis unchanged - after this,

the next 3-4 weeks, all symptoms of an active Crohn's will slowly,

but steady grow in intensity - the last 10 days ALWAYS being QUITE

AWFULL (most of all SEVERE abdominal pain) - SO NOW - ON LDN (and

Remicade but no 6MP) this pattern has changed SIGNIFICANTLY - if not

perfect, then MUCH MUCH BETTER - joint pain is almost GONE (some

small relapses here and there for a day or two max, and far less

severe) no diarrea, has FOR THE FIRST TIME in a DEKADE experienced a

NORMAL, FORMED STOOL (though it was actually quite painfull, as

my " system " is not use to pass such " matter " - but POSITIVE anyway) -

my belly-circumference has shrunk about 3 inches (less oedema/gut-

inflammation) and the psoriasis (on my feet) has diminished

substatially - I've taken photos to document the latter. Some, before

this, PERMANENT Herpes-simplex-like " cold sores " (Crohn's granuloma)

inside the rim of my nostrils has gone COMPLETELY. My energy-level

has incresed ten-fold. So ALL IN ALL I see a LOT OF IMPROVEMENTS -

and (for me) it can ONLY be due to LDN - period!!!

Hoping this MIRACLE will continue, I WILL QUIT Remicade - IF I the

days before next Remicade-infusion (ultimo june) are feeling " on top "

I will cancel this appointment - IF NOT, I will take it (as it is

IMPORTANT to keep inflammation as low as possible to reduce intestine-

scarring and possible new abscesses) - and hope for further

improvement through next period - I have seen that LDN and Remicade

is working side by side - LDN IMPROVING Remicade treatment - FOR ME

this is the truth - MAY BE it is for other's too.

I have ONE SINGLE DRAWBACK: In 2001 an anal abscess devolped into a

fistula - this was partially and surgically removed in 2005 - the

rest is (about 1/2 inch) still present and drained by a double Seton-

wire looped through the channel (PEST!!!)This area is PERMANENTLY

inflamed with phatological bacteries (though reduced somewhat after

taking LDN)- the Seton-wire irritates (intensionally) the fistula in

order to keep it open, tehereby (hopefully) not forming a new

abscess - this MUST keep my immune-system alert to some degree,

raising TNF and CRP no matter what - I have applied for further

surgery to see if anything more can be done - I will NOT go

into " total remision " as long as this " PEST " is active!!!

Other medication: Teveten comp. (Eprosartan mesylate 600mg, and the

diuretic, Hydrochlorothiazide 12,5mg) for hypertension.

Supplements: 6 grams of fishoil every day, aminochelated zinc 50mg, 1

standard multivitamin tablet.

Avoid: Nothing but red meat with a lot of fat.

Dieting: Been there, done that - for 3 years - no dairy, no soy, no

gluten, no sugar, low carb - no significant results, as there was

absolutely NO continuity to what i tolerated or not. Has been tested

for several phatogens without result(exept one occation in 1995 where

i suffered from a severe salmonella-infection from eggs).

A LOT of information about ME ))

Have a nice day...

>

> > Just my two cents: what if Remicade is working 100 % for ,

and

> > LDN is cancelled out? There is also a possibility that LDN is

working,

> > but not Remicade? Or may be 50 - 50 %?

> >

> >

> > Ingrid

> >

> >

> >

> >

>

[Guest guest]

Hi sally

I did'nt see this before i wrote the (other) message to you and

Gunn... please read this (message 65970/71 - I have a problem with

double-sending my post - message 65973) as most of your questions

actually is answered here...

What's not answered I wil try to answer i due course:

I did quit 6MP most of the year I was without Remicade - when my batc

ran out I simply stopped - after surgery in nov. 2005, I wanted to

see IF I had stroken the jackpot - I was urged to increase 6MP to

help against adwerse reactions to Remicade - from nov 05 to feb 06 I

got 5 infusions - simoultaneously I moved to Norway (another story)

with no contact to my " new " local MD or gastros for 3 month's...

HOPING that I NOW was fit and capeable.. but it was'nt so - in May I

suffered a SEVERE colon-bleeding, losing about 2 liters of blood over

one night - I had to " go " every 15 minutes, painting the closet deep

red every time - at 03:00 in the morning I had to call an ambulance,

as I was getting quite dizzy and felt close to unconsiousness (home

alone) - my Hb has dropped from normally around 14 to under 5 - on

the hospital I got IV Cyklocaprone to stop the bleeding, and I

recovered quickly... this started my " contact " with the Norwegian

healt-system, beginning a series of new colonoscopies and the

likes... as told earlier, I was put on Zalazopyrine at first - this

maked me flare up SEVERELY - then Asacol, which I did'nt tolerate

either - no flaring, but it made me feel even sicker - jan 2007 I got

my first 6MP and Remicade in Norway, and this has been my medication

till now - the latest alterations around 6MP and LDN you allready

know...

YES, the Doctors want the patient to take at least 6MP to minimize

adverse reactions to Remicade - often followed by a shot of cortisone

before infusion.

Sad to hear that your son had some adverse reactions (if it was

not " the flue " both times - 6MP makes one quite prone to such

infections) Any adverse reactions 3. time (you wrote " last Wed. So

far so good " )?? If not, he probably has NO problem with Remicade -

then it was " the flue " 1. and 2. time - IF he had REAL adverse

reactions to Remicade, he would probably NEVER be able to get

Remicade again!!

(Remicade are highly specific anti-body proteines (or rather

fragments of those) filtered through complex (secret) methods in

order to leave NO WHOLE PROTEINS in sera - nurse often adding an

extra filter on the infusin-cord to secure NO whole proteins are

transferred, because FOREIGN PROTEINS are THE MOST ALARMING THING of

all what the immune-system may react against - and have one first

ganined adverse reactions to " Remicade-proteine-fragments " , the

immune-system will NEVER forget this " intruder " again!!

Other reasons for " adverse reactions " : IF pre-historical (may not

even be known) hepatitis or tuberculose (and other) is the case,

theese ailments can FLARE UP when getting Remicade, SIMULATNG an

adverse reaction alias " the flue " - I DO NOT SAY that your son suffer

from ANY of theese ailments - it might rather be something from

the " other " group - some " hidden " infections that flare up when no

longer suppressed by TNF - e.g. phatogens in his intestines..??

YES, I feel MUCH better with combined Remicade and LDN compared to

ANY other combination you name... I still have to wait for

experiences when on LDN alone...

I will feel comfortable enough to quit Remicade the day that I KNOW

that LDN alone can keep me off inflammation - if remaining in , let's

say " semi-remission " three days before next scheduled infusion, I

will either postpone or cancel this - and IF I THEN CONTINUE feeling

well, I can guarantee that this story will be spread LOUDLY among my

gastros AND in our local media(s)!!!

Hoping you got some answers - if more questions, FEEL WELCOME )))

...

>

> > this is the culpritt in all this - because WE REALLY WANT TO

KNOW

> > FACTS - for now we can only share experiences - and above is MY

> > experience - this, so far, WORKS FINE FOR ME, and the mext step

will

> > (of course) be to quit Remicade when I feel it SAFE TO DO SO.

> >

> > IF MY experience with Remicade versus LDN is valid for your son

> > too, _your dilemma MIGHT NOT exist_ - you may try LDN and

continue

> > Remicade for your son, at least no adverse reactions seem to

> > occure (other than the sleep-disturbance thing).

> >

> > Just to underline: This is MY experience, and it may fit other

> > " Crohnnies " , or it MAY NOT )))

> >

> > My best wishes for your son

> >

> >

> >

>

[Guest guest]

HI Kathy D...

Your confusion is understandable - I was confused too... but one HAVE TO DO SOME THINKING - like WHAT IF ?? - conclutions based on theoretical assumptions and GUESSWORK is PLENTY (not ment to offend ANY!!) - (please refer to my other answers/ messages under this topic) - I could NOT skip Remicade and 6MP abruptly at the time, as i had NO effects of LDN - next step - what COULD I DO... finding that 6MP was the MOST LDN-CONTRADICTIVE of the two -

Because:

6MP: alters your blood-producing organ (the bone-marrow) to the limit of fatality (6MP always followed by blood-tests to secure that you get as much 6MP as you can tolerate without actually killing you!) - it is a Cytostatica (chemo-related drug) that makes your bone-marrow produce "crippled" red and white blood-cells, thus suppressing ALL elements of your immune-system. Also it is found that 6MP together with Remicade increases risc of cancer!

Remicade: a pure TNF-alpha cytokine* antagonist, blocking and removing TNF-cytokines ONLY - even the macrophages (who are the major contributor of TNF-cytokines) is not harmed - they remain intact, as do the rest of the immune-system - this giving you TIME to regenerate TNF and during such TIME you will have approximately NO TNF-induced inflammation.

*TNF-cytocines (Tumor Necrose Factor) causes inflammation of "body-foreign elements", especially cells considered "not belonging" - that might be real foreign element, such as transplanted organs or blood transfusions, OR cancer cells. When "finding" such cells, macrophages release TNF cytokines, thus inducing apoptose = necrose = self-destruction = death of those cells - so TNF is an RATHER IMPORTANT part of the immune-system- NO DOUBT!!

I had to try one thing at the time - 6MP was the easiest option - and the most obvious - and VOILA!! - after two to three weeks i felt MUCH BETTER, and there I am now... on Remicade and LDN... do you understand???

Love

...

>> > > Hi guys,> > I am confused. I thought you could not use Remicade and LDN > simultaneously???> > > > Kathy D> > > > > > **************Get trade secrets for amazing burgers. Watch "Cooking with > Tyler Florence" on AOL Food. > (http://food.aol.com/tyler-florence?video=4? & NCID=aolfod00030000000002)>

[Guest guest]

COASTAL COMPOUNDING PHARMACY

912 354 5188 ... they are in Savanah, Ga. ..... they mail it (we are in NY)

I think that Dr. McCandless recc. them for the creme. We order a three months supply at a time.

In a message dated 6/27/2008 6:08:14 P.M. Eastern Daylight Time, lavatai@... writes:

Hi All,

Can anyone tell me which pharmacies can provide the LDN cream ?

There are so any variables as to what can be causing this flare, but I would like to eliminate any that I can, so either changing fillers or changing to the cream will be a start.

Thanks,

Lavata'i

Gas prices getting you down? Search AOL Autos for fuel-efficient used cars.

[Guest guest]

DR. MCCANDLESS uses COASTAL COMPOUNDING in savannah, georgia!! that's where i get mine from!!

you'll need a prescription for cream!!

marshiris@...

Gas prices getting you down? Search AOL Autos for fuel-efficient used cars.

[Guest guest]

Hi,

Digestive Advantage for Crohn's is a combination of Probiotics and Digestive enzymes - they've worked very well for her in the past. The probiotic is SCD Acidophilus . The iron is Floramax, which is designed to be easier on the stomache.

We are in American Samoa and do not have the equipment to test for food allergies - we don't even have a GI here. Her doctor at college put her on Flagyl and Asacol, which is now finished - it appeared to cause a huge yeast die off. Previously she had been on Prednisone, which she refuses to take.

She's been pretty good about hydration, and has been staying away from fruits, except bananas.

She did miss her daily green coconut though, which could be a problem. She also made a couple of poor food choices in the past few days. The only milk product she's had is SCD yogurt.

I'm going to ask about switching to the cream.

A making chicken broth for her now, and thankfully just received a supply of Absorb Plus.

She has eaten more carbs than usually (rice mostly) since she started the LDN.

I guess its' green coconuts, Absorb Plus, and chicken until her gut calms down. I don't want to stop the LDN, but am wondering if the Avicel filler is causing probs for her.

Thanks,

[Guest guest]

Not my daughter, honey...LOL...I wonder if the response was under my post?? Saundra RenzEarth, protect her for she is our life!!! Re: [low dose naltrexone] Crohns

SAUNDRA - good idea - look into the cream; it is highly recommended for us crohnies!! maybe she's allergic to the filler in the capsules!! jmccandless@ prodigy.net dr. mccandless is the one who developed the cream for her children patients, whose parents had problems administering the pills and capsules to the youth!! she has been successful with the cream with adult crohnies, too!! it by bypasses the gut, therefore, we get most of the med ingested into our system!! not mixed in with out ulcers and other inflammation in the area of the ileum, where we ingest our nutrients!! CHECK HER OUT!!

I HAVE GOTTEN PERMISSION TO PASS ON HER ADDY!!

marshirisaol (DOT) com

Gas prices getting you down? Search AOL Autos for fuel-efficient used cars.