Sorry this is long, but I have lots of news.
I had my appointments this week and according to the functional md, I have "classic mycotoxin illness". I am aware that mold or lyme are being blamed for all idiopathic diseases by these types of practitioners and they are big money making opportunities for them. I know that this might be grasping at straws, but I am going to try the treatment since it is the only offer besides the lyme Md's year or so of assorted antibiotics (who was certain I had bartonella).
It is the less dangerous and a shorter duration of any conventional treatment... such as cymbalta lyrica, gabapentin, baclofen, zanaflex, flexeril, nortryptyline.
The protocol is a small dose of cholestyramine once a day for a week and then 2 doses for the week after that for 3 weeks. Supposedly it can bind to the "toxins", then it can help the healing of my gut and so fourth. I started today. Of course I am skeptical, but have found some interesting research on how it does actually bind to some toxins on real case reports and medical papers. I also do feel that my liver is not able to keep up with anything. I can't even have 2 sips of alcohol, can't handle the slightest of fumes/ cleaning products, chemical smells with out extreme dizziness. My body is just not processing things properly, so I'm finding this prospect interesting at least.
Moving on, I also went to the occupational/ environmental doctor who diagnosed me with thoracic outlet syndrome on the left side. She is requesting my neurologist to do anther emg for that. I have so much more to say about this and so much to ask about it. Will check the TOS forum for that. She doesn't know if I have two separate issues or that the muscle spasms from the nervous system damage are what is causing the TOS. I believe the latter.
I asked her about mycotoxins and mold during the appointment and she said she was just going to bring that up. She said the research is weak on the cholestyramine, but that mold can be a huge problem for people. She was on board with me trying it and said that it does seem to help certain people and they are not exactly sure why. Also she is going to do as much homework as she can to process the answers to all the questions she asked me and try to find out what is going on.