Like everyone, I've had kind of a rough year. Not to mention the pandemic, in the past ~16 months I've been diagnosed with:
-POTS -C diff (been off abx for more than a year now!) -mast cell disorder of some kind -small fiber neuropathy -uterine fibroids (and had surgery)
and of course, still dealing with Lyme (since ~2011), Babesia (since 2004?), Bartonella (since....?), mold illness (since 2008), etc. Lyme feels mostly under control (based on symptoms).
I have confirmatory tests for everything except the mast cell issue right now - for that I just have some wild photos of rashes on my face and other systemic issues after eating.
I'm not even really sure why I'm posting other than to hear others' stories...I thought I was on the heading-toward-remission pathway, and then everything blew up this year. Has anyone else had this experience?
I'm wondering if Lyme/mold and co set off an autoimmune disorder, which I know happens, but I don't know how to figure out which one.
Or maybe it was all the stress of the last year?
Or maybe I always had all this stuff, just finally peeled the onion back enough that we can "see" them and diagnose them?
With the new small fiber neuropathy diagnosis, I *might* qualify for IVIG, if I have some autoimmune issue that is actually diagnosable.
Anyway, I'll take any kind of advice, words of support, etc. I always end up here when I'm not sure what to do next, and I appreciate this community so much for the knowledge and kindness I always find here.
Posted by daisys (Member # 11802) on :
The only feedback I can give is about C. Diff. I take saccharomyces boulardii—otherwise known as Sacca bou.
I hear it kills C. Diff and occupies the same places, so there’s no room for the C. Diff. to get established. There’s a third reason, but I can’t think of it off hand.
It’s found in health food stores.
Posted by Lymetoo (Member # 743) on :
I think over the years, this is what has been causing so many chronic lyme patients to say they have "neuro" Lyme. I believe that in many cases it is POTS, MCAS, etc that is tacked onto Lyme.
Then there's the auto-immune.
I hear ya, paleogal!! It's not fun!
Posted by Camienard (Member # 52351) on :
With the new diagnosis of small-fiber neuropathy, I had a lot of pain. So far, I haven't had a Lyme/mold autoimmune disorder. I honestly do not even know how it caused it, but so far, I have terrible pain. If it's the same for you, then how do you treat it? In general, the rehabilitation period itself is difficult, but maybe there is some remedy other than painkillers? Because, for example, I have been drinking them for a long time based on herbs. For me, this is a terrible pain that makes you want to scream, the treatment is long, and you need to somehow get rid of the pain at least for a while. Also, in the evenings, I drink herbs, which are based on chamomile. Maybe there are pharmacy drugs, but so far, I have not found a decent one in the pharmacy.