Switching to a Mold-Focused Dr., or just switching docs - Anyone try it?

Just wanted to acknowledge that I saw your post.

I actually started as being dx with CIRS/mold and then had Lyme testing and started learning about Lyme and coinfections. I was too sensitive for abx, so I treated with herbs following Buhner’s protocols plus supplements and later Rx antifungals and antiparasitics.

I am more functional and stable now, but still not normal. I still have to avoid moldy environments and have had to live in my car for the past 2.5 years as well as an 11 month period before that. I am still mold sensitized.

I think focusing on mold is a good idea based on what you stated. The most important thing is getting away from exposure, including cross contamination of personal belongings. That can be soul-crushing for some. For me it was a no-brainer, because I had immediate reactions to contaminated possessions.

If you aren’t familiar with ISEAI, try looking for a doctor on their website.

Extreme mold avoidance would probably have helped me a lot, but I just couldn’t do that solo with no able-bodied, knowledgeable and intelligent person to help me. If that sounds like something you would consider, this is the website with all the resources for that.

In addition to really getting completely out of exposure, people who are really affected by mold tend to be very sensitive to treatment and have to go very slowly. It can take a long time to recover fully from mold illness (years). Treating MCAS can be very helpful, too, especially while trying to treat mold/Lyme or trying to detox.

Post Edited (WalkingbyFaith) : 12/16/2023 12:45:32 PM (GMT-8)

You say you are certain that you have CIRS and MCAS, and unfortunately a lot of well-meaning doctors are not well-versed in how to treat those. Getting a new perspective makes perfect sense to me. I was in your shoes, and tried multiple doctors - some truly great - who really didn't understand how to manage and heal the hyper-reactive system many of us are left with, even after mold exposure and long-term infections have been addressed.

Have you read Toxic by Neil Nathan yet? That book was the first time I felt like a doctor really understood how my body worked, and the advice from it was what finally helped me to turn a major corner.

The "out of it" feeling and neuropathy went away when I finally addressed MCAS properly.

Thank you, Rainy!!!

Aerose, I definitely understand not being up for reading the book Toxic. When I ordered it, I was sure it would gather dust on a shelf like all of my other unread books, but I opened it one day and read it all at once! I think the familiarity of some of the patient descriptions just really hooked me, after so many years of doctors telling me I was exceptionally sensitive, unusually reactive, etc. Finally I was reading about a doctor for whom I was typical, who had ideas for how to help me!

Not everything in the book applied to me, but I was able to identify what my next steps should be and make a plan. Possibly most importantly, the book really drives home that patients vary widely, testing is poor (in general, not just for TBDs), treatment needs to involve lots of angles, pushing through bad reactions and herxing can be downright damaging for some of us, and that patients need to be their own cruise directors because doctors - even well-meaning ones - all have limitations and biases. This was a perspective I had figured out but not seen reflected in any books, and certainly not by any LLMDs I had seen.

I was horribly weak (required a wheelchair and assistance showering) with loads of neurological symptoms, brain fog, POTS, gastroparesis, LPR, peripheral neuropathy, mal de debarquement syndrome (swaying dizziness), proprioception and balance issues, coordination issues, air hunger, PEM, and lots of other things. I was ready to be done. My diagnoses were chronic TBD (two Borrelias, Bartonella bacilliformis, Babesia divergens, Mycoplasma pneumoniae, EBV), reactivated Bartonella, reactivated EBV, adrenal fatigue, POTS, mold toxicity (ochratoxin A), CFS/ME, HPA axis dysfunction, fibromyalgia, migraines, endometriosis, and plenty of other things, depending on which of my many doctors you asked. I had been sick for years, hovering around 50% of my previous functionality for about 3.5 years, but then I got a random cold that floored me and left me bedridden for five months (like long COVID before COVID existed). That's when I read Toxic. Within a month I was at 80% and have stayed there or higher ever since.

What helped me most were MCAS-focused treatments. Curcumin, quercetin, vitamin C, and bromelain became staples. I stopped the immune-boosting herbs I'd been taking. I adopted a strict low-histamine diet, which by itself stopped a lot of my symptoms. DNRS limbic system retraining (which I think I remember you tried?) helped a lot with neurological symptoms and MCAS. Maintaining proper hydration and blood volume helped with POTS (I actually had been over-hydrating, and needed more salt), though this came from finally getting in to see one of the rare dysautonomia specialists, and not from the book Toxic. During my month of rapid improvement, I wasn't taking anything antimicrobial, and I was still living in a moldy house.

I know that these specific things that helped me might not be what helps others turn the corner, but the book includes so many ideas for people who are not benefitting from the "standard" approaches to TBD and mold illness. Maybe try the audiobook version, if you're interested?

Wishing you the best!