Crohn's and LDN

March 3, 2008

livin with crohns,

I too would like as much information regarding LDN and crohns.

My daughter is 23 years old and was diagnosed 3 years ago with crohns. She was first diagnosed with celiac sprue and was directed to eat as a celiac which she did. That was the demise of her. She is 5"7' and she went down to 83 pounds when she finally was diagnosed in the ER by a Gastrointerologist that just started practicing. He saved her life. He wanted to avoid 6MP and remicade but because of all the damage to the Ilieum area she just got worse when she weaned off the antibiotics and steroids. She started 6mp and was rushed to the hospital with pancreatitis so that was off the table forever then it was some more steroids, antibiotics then Flagyl. None of which made a huge difference.

She was in pain all the time and getting worse. She was in bed more times than not and just depressed doing her college work online. The Drs. kept pushing remicade as the only thing left and she was worn down with all this. She just wanted to feel better.

We discussed this option as something to help get her in a good place with her weight and her iron, while I continued to search for another option.

She started remicade Jan 2006. We were and still are not happy every time that IV goes into her arm for 2 1/2 hours. I have been investigating all options and stumbled on LDN about 9 months ago while praying what question to type into the computer that would lead me to better options.

Cutting to the chase here there might have been some evidence that she is forming remicade antibodies and her time might been very limited on this drug.

Her hemoglobin is dropping low again and she needs another iron transfusion. The Gastro told her today that she will probably need iron infusions every 6 months to a year.

This is not unacceptable to her and to me. She is just starting to live a normal life with a normal job and she is engaged.

I have read that she has to be off remicade 4 weeks before starting LDN.

I was at the MS center today with my best friend who has MS. She tried to get the neurologist to write her a LDN prescription and the answer was that she ( the neurologist) could not ethically do it nor would she even know how to write the prescription. She referred her to a DR. in our area that writes LDN scripts. Unbeknownst to this Neurologist we had already been in contact with this LDN Dr and the wait to see him is 4-6 months. My friend has a phone consultation next week with a Dr in Pennsylvania because we were fully prepared for that answer.

I have read the book " Up the Creek with a Paddle" so I could possibly help my best friend now I need some help for my daughter with Crohns before this becomes a nightmare for her..

Is there anybody out there that has made the transition from remicade to LDN?????????

Thank you

Kathy a mom in NJ

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March 3, 2008

Hi Kathy,

I understand full well how you feel - because I also have a daughter with Crohns. has tried all the same meds as your daughter minus the Remicade. She is currently on Sulfasalizine and LDN only - started both about 5 months ago. So far its kinda been hard to judge if these meds are healing her gut yet because she still has cramps most days. I have spoken to several people on this board - (who have been extremely very nice to me!) who all say that my daughter should continue the LDN for at least a year because sometimes it can takes that long - or longer - for it to show a real change. My daughter's weight has remained steady so that's a real positive sign in itself! also attends University like your daughter. I noted that you live in NJ - we are in NY! If ever you would like to talk, pls. feel free to email me for my number. I wish your daughter the very best. Take care, paulette

In a message dated 3/3/2008 5:18:33 P.M. Eastern Standard Time, KatheeLouD@... writes: