LDN update

The LDN has done a great job on her sed rate, keeping it down, but the pesky CRP increased from .7 to 2.4, when she tapered completely off Entocort. In July, the CRP was 1.25 - better, but as long as the CRP is over 1, I know there is inflammation. Also, her vitamin D 1,25 increased to the above normal range when she tapered completely off Entocort...and is still above normal...this, too, can be an indicator of inflammation. 

Thanks to LDN, she has been off steroids for a year, now - and her overall health has never been better. She hasn't even caught a cold - and this is a person who used to get sick all the time. But we are still watching and waiting - tweaking things, like strict SCD) to try to bring Crohn's to a dead stop.

71 is high, and indicates active inflammation. This inflammation is probably getting in the way of absorption of nutrients. My guess is the dose of LDN he is taking is too low to be fully therapeutic. IF the LDN works, you should see CRP declining significantly - and that means down to 3 or below -  within weeks after reaching the full 4.5 mg dose. I'll keep my fingers crossed.

My own daughter is going off LDN and off ALL supplements - her doc, today, said since she has been on LDN for more than a year, it's time to take a break from LDN. Also, she is on strict SCD and has been since May, so we want to see how well the SCD diet can work, by itself - she will be med-free for a month (when labs will be done to see whether her condition has improved or worsened). Taking supplements is a mixed bag - no doc really likes iron supplements, since they have the potential to drive inflammation, and even vitamin D supplements are questionable in people with active Crohn's...the truth is, no doc on this planet really knows, for sure, whether or not iron or vit D drive inflammation in Crohn's patients. So she is not only stopping meds, but stopping supplements, for a month. (Her CRP was 1.25 in July - had come down from 2.4 in May, possibly because she is on strict SCD since May - the Aug lab test "forgot" to test for CRP. Grrrrr.)

Yet another problem with supplements is when she took, for instance, iron, her zinc started to get depleted - so then she had to start taking zinc. When she took vit D, it impacted absorption of iron, so then she had to take more iron. And who knows what else might be depleted by supplements she takes, because the labs don't check everything? So, just for a month, she is planning on getting all her nutrition from food.

We have found that 1000IU vit D, used in the clinical trial, appears to be well tolerated by her, but does not raise the storage vit D enough.