Someone wrote asking if they should seek a fecal microbiota transplant (FMT) for their spouse with PSP. (See yesterday’s post, which reports on a favorable double-blind trial.) Of course, I replied that I can’t give individualized medical advice, but it occurred to me to write this post to mention two downsides that I didn’t mention yesterday.
One problem is that drinking the huge volume of fluid for the 3 bowel preps could be very difficult for someone with PSP. It typically requires drinking a 8 full 8-ounce glasses of a salty-tasting stuff over 2 hours (i.e., one glass every 10-15 minutes) the night before the procedure and then repeating the same thing on the morning of the procedure. That’s 64 ounces twice, which totals one gallon. That has to be repeated at 4 weeks and again at 8 weeks for the other 2 coloscopies/transplants. All those fluids could invite aspiration. I don’t know if using a thickener would be permitted, but that’s not a full guarantee against aspiration, and the mere exertion of the swallowing muscles might not be possible for someone with more than mild PSP.
The other issue is finances. Colonoscopies are expensive — my survey on line suggests an average professional fee of $2,000, another fee for the facility and another for the bacteria to be transplanted. Then, multiply by 3 for the 3 steps in the FMT. I doubt that any public or private insurer would pay for this for someone with PSP, where it’s not FDA-approved. The insurers know that quacks offer FMT for many medical conditions with no proper double-blind trials as evidence of benefit and safety. The insurers may simply lump PSP in with those conditions despite the one small positive trial from China, and it’s hard to argue with them on that.
So, I’ll leave this to the judgment of my commenter’s spouse’s own doctor and to that of the gastroenterologist who would be doing the procedures.