Re: Crohn's Disease & Ankylosing Spondylitis & LDN

November 14, 2007

Hi Izzy,

Welcome to the group!

Here is a site with advice about talking to your doctor about LDN:

http://www.gazorpa.com/PatientGuide.html

For LDN to do its best work, you need to come off all immunosuppressants, as

they tend to oppose the immune upregulating effect of LDN.

I assume you are aware of this study regarding the efficacy of LDN in treating

Crohn's disease:

http://tinyurl.com/2urywq

Another, much larger study is currently recruiting patients.

For a good deal of general information about LDN, visit

http://tinyurl.com/2boot2

With best wishes,

Dudley Delany

dudley_delany

[low dose naltrexone] Crohn's Disease & Ankylosing Spondylitis & LDN

Hi, my name's Izzy and I've was diagnosed with Crohn's 7 years ago and

ankylosing spondylitis 1 year ago(although probably suffering for 10

years) I'm on immuno-suppressants and really want to try LDN as I'm

concerned about the cancer risk associated with what I'm currently on.

I'd really love to hear from anyone taking LDN for their Crohn's

and/or A-Spondylitis, to get some feedback and advice. I'm also unsure

about how to approach my doctor about it. I'm quite prepared to get

LDN privately, but even if they are dismissive, surely I should keep

them informed of what I'm taking? Any advice and experiences would be

greatly appreciated!!!

Thanks, Izzy X

November 14, 2007

Hi Izzy, welcome to this group :-)...I was dx with Crohns in june this year. Have been

sick for 7 - 8 years, but with mild symptoms. This year I got worse, which forced me

to GI. I have only used LDN for 8-9 weeks. I had just tapered my first prednisone

treatment ever, and have only had that med. for my Crohns. While tapering my disease

returned, but I was not as sick as I was before pred. I just had one day without pred

before starting on 3.0 mg LDN each night around 11 pm. It's necessary to follow the

clock and take LDN at the same time each night. And never at daytime.

My pain and the D left me at once. After a week there was no pain left.

My leg and foot cramps also dissapeared.

I have to say that I have been thinking of a possible reasonwhy I immediately felt so well .

It COULD be that I have had pred. pre LDN and thatthe inflammation was at a low level initial LDN.

I also use home made yoghurt, Omega3 (double dose) and cod liver oil. A multivitamin and 1000 mg C-vit as well.

I have cut sugar, wheat and don't drink any milk. I think it's important to think of what you eat,

and the more concious you are about it, the better. Just try to help LDN to work in a

proper way. East Park's olive leaf extract lessen the inflammation as well.

Ingrid

[low dose naltrexone] Crohn's Disease & Ankylosing Spondylitis & LDNHi, my name's Izzy and I've was diagnosed with Crohn's 7 years ago andankylosing spondylitis 1 year ago(although probably suffering for 10years) I'm on immuno-suppressants and really want to try LDN as I'mconcerned about the cancer risk associated with what I'm currently on. I'd really love to hear from anyone taking LDN for their Crohn'sand/or A-Spondylitis, to get some feedback and advice. I'm also unsureabout how to approach my doctor about it. I'm quite prepared to getLDN privately, but even if they are dismissive, surely I should keepthem informed of what I'm taking?

Any advice and experiences would begreatly appreciated!!!Thanks, Izzy X

November 14, 2007

Thanks Dudley, those links are really helpful. Particularly the one

re. approaching doctors. Just to ask, if I don't manage to get LDN

from GP/consultant how do you sort out a correct dosage? Thanks! Izzy X

November 14, 2007

Nice to hear from you, Ingrid, thanks for that. You're right it's so

important to look after yourself. The one non-medical thing I have

found brilliant (controlling D and pain) is high-dose probiotics, the

ones with billions of bacteria in, they're briliant.

Can I ask, were you prescribed LDN by your doctor or did you have to

get it privately? Izzy X

November 14, 2007

Hi Izzy,

A gal named Crystal maintains a list by location of physicians who prescribe LDN

and of pharmacies that compound it. You can contact her at

crystalangel6771@...

If that doesn't work out, you can buy 50 mg Naltrexone without a prescription

tablets here:

http://tinyurl.com/2vfdw5

and convert them to LDN using the instructions here:

http://tinyurl.com/3alm3y

The recommended dose of LDN for Crohn's disease is 4.5 mg nightly.

With best wishes,

Dudley

[low dose naltrexone] Re: Crohn's Disease & Ankylosing Spondylitis & LDN

Thanks Dudley, those links are really helpful. Particularly the one

re. approaching doctors. Just to ask, if I don't manage to get LDN

from GP/consultant how do you sort out a correct dosage? Thanks! Izzy X

November 14, 2007

HELLO IZZY, CAN YOU PLEASE TELL ME WHICH PROBIOTICS THAT YOU USE? I AM

THE MOM OF A 20 YR. OLD WHO HAS CROHNS THAT STARTED LDN A WEEK AGO!

THANKS SO MUCH FOR YOUR HELP.

MAY ALL FEEL HEALTHIER,

PAULETTE---

In low dose naltrexone , " ellesbelles79 "

<ellesbelles79@...> wrote:

>

> Nice to hear from you, Ingrid, thanks for that. You're right it's so

> important to look after yourself. The one non-medical thing I have

> found brilliant (controlling D and pain) is high-dose probiotics, the

> ones with billions of bacteria in, they're briliant.

>

> Can I ask, were you prescribed LDN by your doctor or did you have to

> get it privately? Izzy X

>

November 15, 2007

Hi ette! Great news that they've started on LDN, I hope it helps.

The Probiotics I take are ACIDOPHILUS (with bifidus) which are made by

American Health. They're chewy tablets and strawberry flavour, more

like sweets which is lovely, don't need to be reminded to take them.

The other is LACTOBACILLUS BULGARICUS which is a powder(made by

Biocare Ltd) which you can sprinkle on food. I take both with the

directions on the pack, but they want to start on a lower dose and

build up, I've heard that can be preferable. I'm in the UK so the

ACIDOPHILUS from American Health I had to get shipped in. Biocare are

UK based, but I believe there are fantastic ranges of Probiotics in

the states if that's where you are. Let me know how they get on!! Izzy X

November 15, 2007

Izzy,

I so agree with you about the probiotics, my home made yoghurt is delicious, and filled with them.

I actually live in Norway, so I asked my doctor, not my GI, (I'm sure he wouldn't let me have

a rx). We in Norway have a site on the internet that gives us pdf. files to read and learn "how

to get your doctor to write a rx for LDN", and they have also a pdf. file that has a rx form

so the doctor could fill in, and then I send it to a compounding pharmacy to make LDN from

Naltrexone (Re Via another name of the same drug). Naltrexone / Re Via has 50 mg tablets.

You need to dissolve it in boiled water and do the right measurements and so. You can ask

in here how to make them if you can't find a doctor to prescribe them. Also, Crystal a woman

in here has a list of doctors both in USA and in UK. She may send the list to you if you ask.

A good site for you now is this one:

www.gazorpa.com http://www.gazorpa.com/PatientGuide.html Ingrid

[low dose naltrexone] Re: Crohn's Disease & Ankylosing Spondylitis & LDNNice to hear from you, Ingrid, thanks for that. You're right it's soimportant to look after yourself. The one non-medical thing I havefound brilliant (controlling D and pain) is high-dose probiotics, theones with billions of bacteria in, they're briliant. Can I ask, were you prescribed LDN by your doctor or did you have toget it privately? Izzy X

November 15, 2007

Hi ette,

You are doing a great job for your son! When it comes to probiotics there are some strains that are

better than others, but in the boxes one usually buy there are, as Izzy wrote billions of probiotics with

different strains. If you look for those, which is mentioned as the best in different researches I've red:

lactobacillus bulgaricus, streptococcus thermophilus (as a minimum) and if you also find lactobacillus acidophilus it's even better. There's another one they have found is helping: Lactobacillus rhamnosus

caseii GG. Another one that helps getting rid eventually clostridium difficile: saccaromyces boulardii. I have also seen that if you order by internet or buy in a health store it's better to buy fresh strains that is

skipped in icepackings to keep cold. All probiotics dried or fresh should be stored in the fridge.

I have Crohns my self. I wish you welcome to our group.

How is your son feeling now, have there been any side effects yet?Ingrid

[low dose naltrexone] Re: Crohn's Disease & Ankylosing Spondylitis & LDNHELLO IZZY, CAN YOU PLEASE TELL ME WHICH PROBIOTICS THAT YOU USE? I AM THE MOM OF A 20 YR. OLD WHO HAS CROHNS THAT STARTED LDN A WEEK AGO! THANKS SO MUCH FOR YOUR HELP.MAY ALL FEEL HEALTHIER, PAULETTE---In low dose naltrexone , "ellesbelles79" <ellesbelles79@...> wrote:>> Nice to hear from you, Ingrid, thanks for that. You're right it's so> important to look after yourself. The one non-medical thing I have> found

brilliant (controlling D and pain) is high-dose probiotics, the> ones with billions of bacteria in, they're briliant. > > Can I ask, were you prescribed LDN by your doctor or did you have to> get it privately? Izzy X>

November 15, 2007

THANK YOU EVERYONE FOR BEING SO WELCOMMING TO MY DAUGHTER AND MYSELF.

WHEN I FOUND OUT ABOUT LDN I LITERALLY GOT DOWN AND CRIED OUT TO G-D,

I HOPE AND PRAY THAT THIS WILL HELP HER TO HEAL HER COLON ULCERS. ITS

ONLY BEEN A WEEK NOW SO I THINK ITS STILL TOO EARLY YET BUT SHE TAKES

IT EVERY NIGHT. SHE IS ALSO ON CIPRO AND FLAGYL AND PENTASA. IF

ANYONE HAS ANY SUGGESTIONS, I AM ALL EARS! THANK YOU ALL AGAIN AND I

WISH YOU ALL HEALTH AND JOY IN YOUR LIVES. PAULETTE - (AND SARAH)

> >

> > Nice to hear from you, Ingrid, thanks for that. You're right it's

so

> > important to look after yourself. The one non-medical thing I have

> > found brilliant (controlling D and pain) is high-dose probiotics,

the

> > ones with billions of bacteria in, they're briliant.

> >

> > Can I ask, were you prescribed LDN by your doctor or did you have

to

> > get it privately? Izzy X

> >

>

November 15, 2007

Hi ette,

There is a book called " Self Healing Colitis and Crohn's " that may provide

valuable supplemental information in treating 's condition. It is available

from Amazon,.com through this link

http://tinyurl.com/27qxj3