You are not alone. Not to sound cheesy, but I will hold your hand through this as I am going through the same thing. I was misdiagnosed as having colitis of unknown origin (given steroids!). I took herbs and that caused scattering of worms to places outside of the gastrointestinal tract.
I feel everything you say 100%. Why are the doctors not aware of this, better educated? Why isn't there better treatment? Why must I suffer so alone in quiet or else feel shame that I must be a 'delusional' case? This needs to stop. We run marathons for people with cancer, but send people with parasitic hyperinfections to the psych ward?!!!
I spend all day and night trying to find someone/anyone who can help me. I have taken some antiparasitics to no avail yet; I probably waited too long- a year without treating- because I kept expecting a medical professional to understand and guide me. I am still holding out hope that some form of media or parasitologist will help. I have to at least hope that. :'(
I am young. I have a young family of four and suspect we all have this. I'm likely the most symptomatic. My three year old cannot tell me... when husband met with the pediatrician, she said that is very rare and unlikely. So, my children were not tested. Testing seems so challenging to get accurate results. Why?! How can this be! With cancer, at least it can be diagnosed properly. I do not mean to sound belittling to cancer patients at all. God bless ever sufferer.
But here I sit and wonder who can I travel to see for help? With cancer, every hospital, hospice, and physician understand that disease. Why not this disease?
Please private message me anytime. We could lean on each other.
God bless you!