Fern Posted December 17, 2022 Report Share Posted December 17, 2022 Hi: I've had to be on Miralax for about 20 years due to an autoimmune dysautonomia. Recently I had a microbiome study done through NirvanaBiome. I was fascinated to see that my B5 and B6 is rock bottom in the microbiome study. My b6 serum test came back normal and awaiting a b5 serum test as well. But for some reason in the gut microbiome b5 and b6 were totally depleted. I am now wondering if Miralax could cause that and if that could be the Miralax/mood/irritability connection. There were also some specific bacteria that should be in my microbiome that were not. I think it would be a fascinating study if a group of regular Miralax users did the NIrvanaBiome testing to see if there is a pattern in abnormal microbiome results that might be connected to Miralax. Does anyone know any gastroenterology specialists with a particular interest in the microbiome? ~Fern Quote Link to comment Share on other sites More sharing options...
Jeffrey Roberts Posted December 19, 2022 Report Share Posted December 19, 2022 I'm not sure that anyone has studied the microbiome to the extent you have done. Dr. John Damainos, currently a GI Resident at Yale University medical center, is very interested in microbiome. The easiest way to contact him is via his Twitter account, @john_damianosMD Quote Link to comment Share on other sites More sharing options...
Fern Posted December 19, 2022 Author Report Share Posted December 19, 2022 Oh, thanks for letting me know! I don't use Twitter so hope there's another way to reach him. Interesting he is at Yale as I heard another Yale GI doc is also interested and works in this area, Dr. Feuerstadt. It would be fairly staright forward to set up a microbiome studies on a group of GI patients using miralax to see if there are correlations. Thanks for your rsponse Quote Link to comment Share on other sites More sharing options...
Jeffrey Roberts Posted December 19, 2022 Report Share Posted December 19, 2022 Yes, Dr. Feuerstadt also seems to be doing work in that area too. Dr. Damainos is going to be starting his Fellowship at the Mayo Clinic in Rochester, MN next year. I'm not sure what would be involved in a study like that. Studying the microbiome is still very specialized because some bacteria can't exist outside the large bowel environment. There is also the issue of funding for studies and the significance of the analysis. Is it relevant in treatment or the development of disease? Dr. Pimentel at Cedar Sinai in LA, has done a lot of work with analyzing the microbiome related to SIBO. Quote Link to comment Share on other sites More sharing options...
Fern Posted December 20, 2022 Author Report Share Posted December 20, 2022 Oh interesting Damainos will go to Mayo, where I had some of my diagnostics done. I found an e-mail for him so will contact him. I do know about Cedar Sinai and Pimentel. Good idea, I might send my idea and reports his way! Thanks so much. I got tested via NirvanaBiome, which was recommended by a researcher who did my first microbiome study when he was at Baylor College of Medicine. Had some correspondence with Damainos! Thanks for that contact, very helpful. 1 Quote Link to comment Share on other sites More sharing options...
DjH Posted January 22 Report Share Posted January 22 I also take miralax. Has anyone heard they are taking it off the market and why? I have CIC and need help on a daily basis. No prescription drugs have helped. Quote Link to comment Share on other sites More sharing options...
Jeffrey Roberts Posted January 22 Report Share Posted January 22 I have never read that miralax was bring removed from the market. There was a ruling from the FDA a number of years ago, that the active ingredient in miralax, polyethylene glycol 3350 (PEG 3350), should not be prescribed as the dispensed medication is the same as the over-the-counter product. That's all that I am aware of. Quote Link to comment Share on other sites More sharing options...
DjH Posted January 23 Report Share Posted January 23 8 hours ago, Jeffrey Roberts said: I have never read that miralax was bring removed from the market. There was a ruling from the FDA a number of years ago, that the active ingredient in miralax, polyethylene glycol 3350 (PEG 3350), should not be prescribed as the dispensed medication is the same as the over-the-counter product. That's all that I am aware of. Gosh do you feel it is safe? My dr has never said anything g about discontinuing it. I wonder what long term use will affect us. Quote Link to comment Share on other sites More sharing options...
Jeffrey Roberts Posted January 24 Report Share Posted January 24 I'm not sure I phrased that very well. Miralax is perfectly safe and is not being discontinued. Some doctor's were prescribing miralax with an actual prescription that was being filled by a pharmacist. The FDA ruled that it does not need to be dispensed by a pharmacist. Rather, patients can purchase it over-the-counter. Quote Link to comment Share on other sites More sharing options...
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