Forum Replies Created

  • DavidW

    Member
    January 4, 2022 at 8:13 am in reply to: Work arounds for the bitter taste of phenylbutryate?

    As a follow-up, I found a less burdensome recipe: small curd cottage cheese.  I mix the 3 gm PB with 1/2 of a small carton of cottage cheese (~135 ml).  The nice benefit of this monotonous regimen  is that you get 13 gram protein twice daily, which makes achieving the protein intake goals easier to achieve. As to the Tudca, maple syrup is the easiest vehicle: two scoops of Tudca into ~10 ml water ( 2 tspn) dissolves the powder (a little smashing of tiny clumps speeds the process), then add ~5 ml of maple syrup (or more to taste) and mix again.  Take a sip of water when done or even while drinking.

  • DavidW

    Member
    April 3, 2022 at 4:04 am in reply to: SUPPLEMENTS TO SLOW ALS PROGRESSION

    I am taking both Sodium Phenylbutyrate and Tudca (these are off-label Rx for the components of AMX0035 ).  It’s expensive and not covered by health insurers as they are not FDA approved).   As it is tax time, do you have any experience with whether the cost can be deducted on one’s US tax return under the criterion: “nutritional supplements prescribed by a physician.”