AmisAnn, what a terrible time you have been having. My heart goes out to you. I am so glad that you continue to reach out for help, as sometimes giving up feels much easier! Many of us have been in these places of great suffering, and eventually we do find a path out, but it can be so very hard. I hope that one of us helps make that path a little easier to walk for you!
Teasing out what is causing what can be so difficult. It's great that you are not being exposed to mold anymore. Were you treated for possibly internal colonization, like with antifungals (meds or herbs) and/or a nasal spray? I wonder if your gut is so imbalanced partly because of fungal growth. Have you had stool testing for anything other than C. diff.?
Do you like and trust your Lyme (and mold and gut) doctor?
My functional medicine folks treat SIBO with pharmaceutical antibiotics or with an herbal protocol, but always including probiotics; mine used high doses of probiotics alternated (different times of day) with berberine, artemisinin, olive leaf, black walnut, and wormwood. My body responded to that very quickly, dropping a large amount of weight very fast and clearing out my gut. I had asymptomatic SIBO and gut dysbiosis (according to a Genova GI Effects stool test), but I did not have C. diff. I was surprised to see that you are not able to take probiotics because of SIBO, as it's been a major factor in SIBO treatment for me, although because of MCAS my probiotics have to be low-histamine strains. One of my functional medicine docs has treated SIBO in some patients using only high-dose probiotics.
I don't know many people with C. diff. but someone I'm close to had it for over a year - so hard to eradicate! - and eventually solved the problem with a fecal transplant.
You mention trauma and PTSD from all of this - yes, of course! I hope that you are being very gentle with yourself about
that. Since even mainstream medicine recognizes that trauma exacerbates chronic medical conditions, are you able to connect with any health services that could help, like a counselor, restorative yoga class, qi gong, craniosacral therapy, acupuncture, meditation? There are some great guided visualization meditations online that can help your nervous system steer toward a safe place. This can be so helpful, since a nervous system stuck in fight-or-flight cannot digest, heal, produce hormones, fight infection, reduce inflammation, process out toxins, or otherwise function normally. Here's one resource: https://healthy.kaiserpermanente.org/health-wellness/podcasts My favorites are headaches and fibromyalgia.
Sorry if you mentioned this and I missed it, but what sorts of supplements, diets, and practices are you doing these days? Can you tolerate supplements that might help to reduce cytokines and inflammation, like curcumin? What is your diet like? Do you have mast cell issues? Herbs can affect your microbiome, yes, but not in the way that pharmaceutical antibiotics do. Not tolerating pharma abx does not mean that your body can't tolerate herbal abx. https://rawlsmd.com/health-articles/how-do-i-restore-my-gut-after-antibiotics The Rawls website has a lot of great information on herbal approaches.
When I was feeling my worst, like I would react horribly to everything and didn't know where to start, I found the book Toxic by Neil Nathan helpful in formulating a plan for what to try next. His recommendations (including especially DNRS and MCAS treatment) improved my functioning and quality of life significantly.
For UTIs, people do get better using anamu, cranberry, and other remedies that are definitely worth a try if a prescript
ion treatment isn't an option. Do you have the at-home UTI test strips? Those can be so helpful for saving trips to medical offices.
I hope that something that one of us has said will resonate and help, or at least make you feel less alone. Sending you lots of healing energy and a virtual hug.