Great feedback, everyone, thanks! She decided to go with LDN + strict SCD (which means no more rice or potatos).
Spooky, I had already checked that Mercola link and videos, but was disappointed to find no talk about LDN+ALA combo and Crohn's. Dr. Burkson might use LDN+ALA, but not for Crohn's.
reisasmom - I realize you don't want me to worry, and appreciate the kindness, but like EMom so aptly said, this is indeed a puzzle we are trying to figure out in order to take the right actions. CRP levels not fluctuating, but steadily rising (multiple lab tests in a row) and higher than they have ever been, before -- she never had higher than a 2 (and that, only once or twice) - unless she was ill with a virus or bacterial infection. Before she developed Crohn's, her CRP was .6. So a CRP of 2.45 is not normal for her. By itself, might not mean much BUT the vitamin D 1,25 is, for the first time, above normal and some docs think high vitamin D 1,25 indicates inflammation. Also, her ferritin is normal but her hemoglobin (which is usually fine in the presence of normal ferritin) is low and so is her TSAT, which also indicates inflammation. So if we triangulate the data --CRP/HGB/D 1,25-- something is going on. Even docs use the word "remission" loosely - when, in fact, a patient still has microinflammatory activity. The following abstract questions whether Crohn's patients said to be in clinical remission (for instance, per a low CDAI score) are really in remission if their CRP is elevated above normal. I'd love to look away, but the data tells the story--at least at the microinflammatory level. By the time symptoms show, yet another stricture might have been created...and this time, it might turn into scar tissue rather than go away. Our goal is to bring Crohn's to a dead stop, meaning we are looking for normal biochemical markers confirmed by a colonoscopy...back to the drawing board;) With her propensity toward stricturing in the TI, the chief danger is the need for surgery. See link to abstract below, questioning CRP and remission:
http://www.ecco-jccjournal.org/article/S1873-9946(08)00063-9/abstract"It is not clear whether Crohn's disease patients in clinical remission (Crohn's disease activity index<150) display normal concentrations of inflammation sensitive biomarkers. Our goal in this work was to explore the intensity of the microinflammatory response in a group of Crohn's disease patients in clinical remission...Crohn's disease patients in clinical remission displayed a statistically significant (p<0.001) elevated concentration of hs-CRP (4.83±3.8 mg/l) compared to controls (1.05±2.9 mg/l). All other bio-markers were also significantly higher in Crohn's disease patients in remission compared to controls. Similar results were obtained in a subgroup of Crohn's disease patients with very low disease activity — CDAI<75...Clinical remission is not equivalent to biochemical remission raising a question concerning the true definition of remission in Crohn's disease."
Beesting, I love how you lay out the options! Option 1 - see answer to Spookyhurst. Option 2 - this is not a flare, and if she does flare on LDN, we will kiss it goodbye - because a flare means Crohn's has been festering, all along. Option 3 - she is meeting with the doc on Wed, and will ask him what he thinks about this but this is not a flare -- instead, is a steady deterioration of biochemical markers. LDN suppressed the sed rate but it never, by itself, suppressed CRP, which has steadily risen since she went off Entocort so a one-time uptick in LDN will not fix what has been a consistent problem. Your suggestion about the starches seems to be the safest option. And we have been wondering if it makes sense to give strict SCD another try. So she started strict SCD yesterday and in 4 weeks will do another blood draw...to see whether things are getting better or worse. I read Boyle's book but was disappointed it was all about MS - didn't learn anything new. However, the video you mentioned about LDN dosage sounds fascinating.
Wish I'd gone to DDW myself, since I can't seem to get the details about Smith's findings. Paid $30 to download them from the DDW website but received an email saying I'll get them when they are ready.
Hope everybody understands that vitamin D 1,25 is NOT the vitamin D we talk about when we suggest vitamin D supplementation. The supplementation is intended to raise the other vitamin D, vitamin D 25 hydroxy.
She has also lost a lot of weight since starting LDN and can't seem to get it back on. Has been underweight since getting off Entocort in September.
Post Edited (njmom) : 5/24/2010 4:51:44 PM (GMT-6)