Hello all- I am new to the group, but saw this post on LDN. I joined in interest in what other Crohn's patients are currently using for treatment, because we found something in LDN and diet that really works. My 14 year old son has severe Crohn's. We have been out of the mainstream for a while now, seeking better treatments because my son was refractory to every treatment to some degree, including Remicade, Imuran, anti MAP antibiotic therapy and all of the big guns. In 2005, he was sent home from the hospital in a wheelchair (because of a severe fistula) and we were told Crohn's would make him weak and sick for the rest of his life and we had to learn to accept it. Prednisone worked, but that, of course, is not a longterm option. The doctors started getting stingy about giving out the prednisone prescriptions, even though that seemed to be his only lifeline. He had severe, fistulizing Crohn's Disease with symptoms starting mildly when he was about 6 years old (bleeding and incontinence) and then later diagnosed. He had long, frequent hospitalizations. Doctors were ready to do a colostomy. His growth was stunted and his bottom was like swiss cheese with all of the holes from fistulas, abscesses and fissures.
His only med is now LDN and he's also on a diet with no fermented foods. No yeast, fungus (most additives are fermented in manufacturing, including corn syrup and vitamins [even the ones that say 'yeast-free' on the label]) or foods he has been sensitive to like tomatoes, potatoes, tea other than herbal or white tea, which is not fermented, and chocolate.
On LDN and the diet, He's had slow and steady weight gain and has now been growing out of his clothes after years at the same size. The past few days, I actually forgot that he he was ever sick! Zero symptoms. Active and healthy and happy. His fistulas are 90-95% healed and still slowly improving.
He takes 4mg LDN daily from Skip's Pharmacy with sucrose as the filler and he has also used the 50mg Revia pills dissolved in water with the same good results. We follow the diet fanatically, because he gets a flare otherwise, although the LDN has made the flares from dietary slips less intense over time.
My son, like many Crohn's sufferers, has an immunological response to yeast (like most, he is positive for ASCA), so it is very beneficial to keep it out of the diet. Even though the doctors didn't seem to think it would work to avoid yeast (because yeast is "everywhere and cannot be avoided"), it has worked great. We spent years figuring out the diet, then recently read The Yeast Connection as an afterthought and the diet listed there is pretty much the same, except our son still eats sugar and we have fine tuned it to his needs. The only supplement we have found that is not derived from yeast is coral calcium, so he takes that along with eating very nutritious foods. We used to think probiotics worked, but they never got him 'well' and we eventually noticed he was sensitive to them. Also, he eats broccoli sprouts sprouted at home, although the Yeast Connection says to stay away from sprouts. We just rinse them well and the nutritional value can't be beat. We are big on foods that are high in nutrients. One of the hardest things is staying away from vitamin enriched foods, especially flour and packaged foods, but we have found great brands of unenriched flour and pasta for cooking and baking. Also, condiments are difficult because he can have almost no commercially prepared condiments (mostly because of vinegar), but the ones we make at home are great. Those vitamins used to 'enrich' our foods are cheaply made from yeast.
For my son, LDN and diet had to go hand in hand. One does not work without the other, but together they are truly a miracle.