julie_2girls Posted January 15, 2012 Report Posted January 15, 2012 I did a search but did not see this discussed. Anyone try LDN for autoimmune disease. I saw on one site it may be indicated for PANDAS. my daughter has autoimmune diseases: psoriasis and hashimotos and most likely autoimmune POTS. So thinking it may be worth trying but we cannot afford to make her worse. thanks, Julie
amyjoy Posted January 15, 2012 Report Posted January 15, 2012 We recently started using the LDN with some of the children with PANDAS we are treating in our office and are in the middle of assessing the effectiveness. I will be happy to report back. It makes alot of sense to try it because of the autoimmune issues, as you said.
dcmom Posted January 15, 2012 Report Posted January 15, 2012 julie- I don't know anything about the illnesses your daughter may have, but, my daughters both have pandas, an autoimmune disorder (in my mind) and they have REALLY benefitted from the use of oral steroids, and high dose iv steroids. This is done for several autoimmune disorders.... have your doctors considered this type of treatment?
mdmom Posted January 15, 2012 Report Posted January 15, 2012 My DS14 (PANDAS, Lyme and Co-infections) and DD12 (Lyme and co-infections) have been taking LDN for 5 months now. I have not seen any side-effects. I cannot report on whether or not it is helping, but I have no bad side effects to report.
julie_2girls Posted January 16, 2012 Author Report Posted January 16, 2012 i wonder about steroids helping her. she does well with ibuprofen. i will ask her dr this week. i hear that once you stop the steroids symptoms come back, is that so? i take hydrocortisone due to adrenal fatigue. she is on florinef due to dysautonomia and probably low aldosterone. so interesting to think about steroids helping...
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