Hey there - to jump in here - I have the same issue with DBAL not giving this information (taking Humaworm) to his doctors since he is sure it is the cause. I have no reason not to believe he has ALS or is dying but I guess I don't know that for sure either. He told me in a post he did not tell his doctors about Humaworm because he was embarrassed to. That may be true, but I know with my Mom, we were desperate to find anything to get out of her system to stop or slow the ALS progression. No one can say for sure how you'd react in the same situation, but I think if I were sure something particular caused my disease, I'd speak up about it - not just for me but also for other ALS patients/research. That's just my opinion. Take care, Katherine