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dinkydee
Regular Member


Date Joined May 2009
Total Posts : 201
   Posted 6/22/2009 6:56 AM (GMT -7)   
Have any of you heard to MMS or used it for you CD?  (Miracle Minneral Supplement)  I'm needing some information on it and LDN for my neice, who's CD is alot worse than mine.  Thanks.
Diagnosed with CD 3 years ago.  Refused to take meds until recently started Colazal. 
 
 
I live by faith and not by sight....


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 6/22/2009 9:46 AM (GMT -7)   
Miracle Mineral Supplement is something I think is a bit of spam.

But LDN has a yahoo group that is good.

What is your neice on now?
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


dinkydee
Regular Member


Date Joined May 2009
Total Posts : 201
   Posted 6/22/2009 6:32 PM (GMT -7)   

She has been on steroids since last year when she was hospitalized with a pretty bad flare.  She is on another med as well that I'm not sure of.  She had been tapering off of the steroids and I believe they want to put her on Metheltrexate. (spelling?).  Anyway, her parents are afraid of the longterm side effects and have been researching on line.  She is taking MMS right now.  They(her parents) want her to try the LDN but her doctor said he never heard of them giving it to children and is mad that they don't want to put her on the stronger med.  They want to do what is best but this doctor won't discuss things with them and gets irritated with them.  My doctor spends alot of time listening to me and answering questions.  Allows me to make decisions and was patient with me when I was resistant to taking meds.  Any info would be appreciated.

Thanks


Diagnosed with CD 3 years ago.  Refused to take meds until recently started Colazal. 
 
 
I live by faith and not by sight....


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 6/22/2009 9:00 PM (GMT -7)   
Jill Smith at Penn State (who published the last LDN study) is currently doing a kids study. I can't imagine why it would cause kids any problems. You'd have to be light handed with the dose so the kid wasn't up till super late night at first. Otherwise, LDN doesn't really have any side effects that I know of, or have personally experienced. Why not pass Smiths information to her parents? I am not suggesting being in the study, (I hate anything double blind) but I'm sure they could get their questions answered, and perhaps a referral from her office. See phone number below.


The Efficacy of Low Dose Naltrexone Therapy in Children With Crohn’s Disease (IRB# 27793)
Status: Active


Investigators:

* Jill P. Smith, MD


Description:

Dr. Jill Smith is currently enrolling pediatric patients in a 5 month study with 7 visits to test the effectiveness of a low dose of naltrexone in offering relief to patients suffering from symptoms of Crohn's Disease.


Eligibility:

* All subjects must give written informed consent by parent or guardian
* Male or female subjects, > 6 - 17 years
* Patients must have endoscopic or radiographic confirmed Crohn's Disease.


Exclusion Criteria

* Adolescent women of childbearing potential and / or sexually active unless surgically sterile or using adequate contraception (either IUD, oral or deport contraceptive, or barrier plus spermicide), and willing and able to continue contraception for 3 months after the completion of the study.
* Adolescent women who are pregnant or breastfeeding
* Subjects with an ostomy or ileocolic anastomosis from surgery as these operations interfere with the PCDAI assessment
* Subjects taking tacrolimus, cyclosporin, mycophenolate, or anti-TNF-α therapy must be discontinued 4 weeks prior to study initiation.
* Patients with abnormal liver function tests
* Prednisone greater than 10 mg or > 0.2 mg/kg orally


Additional Study Details:

What is expected of me and my child?

Dr. Jill Smith is currently enrolling pediatric patients in a 5 month study with 7 visits to test the effectiveness of a low dose of naltrexone in offering relief to patients suffering from symptoms of Crohn's Disease.

Length of Study

* 5 Months, a total of 7 visits


locations:

* Hershey Medical Center, General Clinical Research Center


Contacts:

* Sandra Bingaman
sbingaman@hmc.psu.edu
717-531-8101


Categories:

* Gastroenterology
* Crohn's Disease
strictures, crohn's, adhesions, endo. Pyoderma Gangrenosum.
Trying LDN 4mg nightly ~ because I'm allergic to pentasa and 5ASA's I'm taking Boswellia Serrata. Olive Leaf extract. SCD yogurt. Using silver sulfadiazine on Pyoderma . B-12 shots. Juicing veggies!


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 6/23/2009 7:02 AM (GMT -7)   
I would be careful of MMS because it can irritate the gut, due to it being a very mild chlorine dioxide. The adverts say that it provides a mild stimulus to the the immune system, but it does it by irritating it. While yes it has be used to sanitize drinking water and remove mold from Katrina hit areas, I know I first started having problems with tap water giving me heartburn. So it could be making her worse. Just something to think about, I just would really be cautious about putting any form of chloride in her right now.
With LDN I would caution if she has to use narcotic pain killers.
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


dinkydee
Regular Member


Date Joined May 2009
Total Posts : 201
   Posted 6/24/2009 4:03 AM (GMT -7)   
Thank you I will pass this all on to them!
Diagnosed with CD 3 years ago.  Refused to take meds until recently started Colazal. 
 
 
I live by faith and not by sight....

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