Posted 1/8/2020 9:40 AM (GMT -6)
Freeze-dried stinging nettles, quercetin, bromelain, and DAO are helpful supplements for MCAS, and there also are mast cell stabilizer drugs like cromolyn sodium that can help. I really do stress diet, though. Are you familiar with which foods are high in histamine? Many are quite healthy and clean. Do you eat anything fermented at all, like yogurt, kombucha, miso, sauerkraut, tempeh, alcohol? All incredibly high in histamine. Very ripe raspberries and bananas I react to as well. Some react to leftovers, citrus, tomatoes.... Once I switched to a low-histamine diet, I never had brain fog again. But of course people's triggers vary. Being hot or cold, exercise, showers, stress, particulates in the air, any allergens....
Mold can follow you on your mattress, pillow, and other belongings. It's also pretty common, sadly, so once you are sensitized to it, you might react to a lot of places. (I learned this while house hunting - spent a fortune testing potential houses and discovered they all were going to require mold remediation!) You also could be reacting to past exposure, still stored in your body. Might be worth having the Shoemaker panel of tests and the Great Plains mycotoxin test panel, just to rule it out. But I hear your point.
I don't understand the theory that Lyme being weakened would make Bartonella flare. Seems to me these are not polite infections that take turns, and that a system taxed by one infection would have symptoms of the others. Maybe they just mean you are noticing Bartonella symptoms more now that you're not distracted by Lyme? What makes them think that the symptoms you describe are Bartonella now and not still from Lyme? I'm not saying this is wrong, just curious about it as an idea.
There was a thread on here not long ago about hair loss. I have a non-Lyme friend who loses hair purely from stress. I'm glad to hear that your thyroid and adrenal hormones are okay, but what about your reproductive hormones? Those being off can cause hair loss as well. The symptoms that make us look different can be especially hard to process sometimes.
It does seem like you are taking some heavy hitters for antimicrobial treatment. Your suspicion about not making progress makes sense to me. How long have you been on the disulfiram and Beyond Balance and Methylene Blue? If you don't notice anything from those, then I really do suggest looking into heavy metals. Have you had any dental work done? Eat a lot of ocean fish? Any lead paint or other exposure? Also do try reading Neil Nathan's Toxic. The book offers several possibilities for why folks with Lyme don't make progress.