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.

Happy to hear you have something to try. I'll be anxious to hear back on your progress (hopefully)!

As an aside, I was also diagnosed with TOS by my neuro. Two other doctors said I didn't.

Have you had any mycotoxin testing? Have you had a Lyme test that isn't the typical Elisa test? Or are you just so frustrated at this point that you are going to try treating?

What did your prior EMG show? There is definitely some good TOS info on this forum.

One Emg abnormal, and one good.
No lyme test besides Elisa, but being that my children also have some symptoms, I feel more like it is an exposure issue vs tick borne. I could be wrong.
Yes, I am extremely frustrated and feel like my life is going by with this pain, dizziness, and weakness making things so hard. Something obviously happened so I am exploring all the possibilities.

Healthgirl, I hear you. I'm willing to explore any possibility that explains what's going on. For what it's worth, I read everything I could find on the issue and the best evidence for toxin binding and removal is on the side of Cholestyramine. I may eventually try it myself. Did you try activated charcoal? There is less research for it, for obvious reasons, but it does also seem to be less efficacious than cholestyramine. It seems quite harmless, well tolerated, so I would say it's worth a try. I will try activated charcoal at some point, after a couple of months of herbal antibiotics, antifungals and the like. Good luck and glad you've found a doctor who can at least support the path you want to take.

Hi David,
I only took the activated charcoal 3 times. I have to say it was extremely helpful for abdominal pain, but I didn't feel comfortable using it at high doses everyday because it isn't prescribed that way and I already have to be careful with malabsorption. I still have that concern with the cholestyramine, but this doctor is going to keep track of my vitamin/mineral levels. He is extremely expensive and I am skeptical, but trying to be hopeful and remain positive.
I am glad I have the opportunity to go to him and I'm not sure if he is full of beans but according to him, I should feel an improvement by 3 weeks. I will be the guinea pig for all of us here who have this deranged illness and feel that it has to be something toxic. I am still convinced it is microbial/chemically induced.

I've done some reading on this also and it's pretty interesting stuff. Thanks for being a guinea pig.

Hi Healthgirl,

Thanks for your response. Glad to hear it, but I get it. I'm not sure precisely when I'll take the AC, but it won't be closer to meals, likely between lunch and dinner, which would give me about 4-5 of time. What was your dosage? I worry more for constipation. Did you have any issue there? From what I've read it doesn't bind well to inorganic substances, so, say, heavy metals, but to organic ones.

I'm glad this pricey doc is keeping an eye on vitamins and minerals. It's the least he can do. Like I said, I've read good things about Cholestyramine, and it seems it's relatively harmless, considering what else people with our issues have on offer as far as Rx goes. I may get to cholestyramine myself, since like you I'm also convinced it all began with a infection in my case too.

Well, I wish you the best of luck, also because your children seem somehow implicated in what is happening to you. I'm sorry for this, and hope you find some answers. I'll be rooting for you. And I do appreciate you guinea pigging yourself, if I may use it as a verb.

Well that is frustrating. EMGs can be so hit or miss. And sometimes it's the person doing the EMG that is hit or miss. My peroneal nerve has damage - I had 2 EMGs one year apart. I'm lucky they both EMGs both showed the same result, given that the resident who did my first one was so confused that she had to call the tech into the room to help her. I was lucky recipient of more zapping on other leg that wasn't supposed to be tested. Dang teaching hospitals.

Well it looks like you are on a good path right now and if it doesn't pan out, maybe you or one of your kids could take a lyme test of some sort. The unfortunate thing for you is lyme docs in your area are so outrageous. I still can't get over the cost. It would be cheaper for you to fly to Wisconsin and get an evaluation from someone here.

Well you probably saved your money on some mycotoxin test as it's fairly expensive. The proof will be in the pudding if the treatment makes you better. I hope you make some headway on this. It's hard to keep positive while living with all this pain.

is one of the flakiest subjects. I am happy that you have proffessional people that are trying to resolve your issues. I saw a video of folks eating Chia seeds and immediately drinking a glass of water. Supposedly toxins are supposed to bind to this stuff and it looks like frog eggs in a gelatinous goo. Wishing you the best, Ken in Texas.