Posted 7/4/2024 10:40 AM (GMT -5)
I'm sorry that your providers are telling you that you have conditions like mast cell activation syndrome (MCAS) and mold toxicity but not telling you which symptoms make them think that or how to address them. That sounds scary and overwhelming!
Mast cells are part of your immune system and are in every part of your body as a result. They react to insults that your body and brain perceive. When they start to react to things that aren't actually threats, or when they over-react to minor threats, then that is considered mast cell activation syndrome. I also did not have a stereotypical presentation for MCAS, so it took me a long time to realize I had it.
MCAS symptoms can include: unusually strong or long-lasting herxes, brain fog, dizziness, headaches, irritability, anxiety, fatigue, throat irritation, congestion, cough, anaphylaxis, nerve twitches, peripheral neuropathy, joint pain, eye irritation, sound sensitivity, itchiness, rashes, skin irritation, reflux, diarrhea, stomach cramps, IBS, interstitial cystitis (UTI symptoms with no infection), temperature fluctuations (like hot flashes), food allergies, environmental allergies, chemical sensitivities, issues with fragrances, worsened PMS symptoms, etc. MCAS encompasses a lot of possible symptoms because mast cells are everywhere, in every body system, and not every mast cell will be over-reactive, so how MCAS looks and how it is treated and triggered will vary from person to person. In other words, a person with diarrhea from MCAS might need different treatment and management from a person with neuropathy from MCAS.
Triggers can include herxing, mold exposure, allergen exposure, air pollution, chemicals in body or cleaning products, strong scents, showers, friction, abrasive fabrics, massage, emotional stress, physical exertion, heat, sweating, shivering, high-histamine foods/beverages/supplements, bee stings, immune system activation, and many more things. Some people with MCAS become so sensitized that ingesting literally anything can trigger symptoms.
Treating MCAS is very possible, but people usually need to try a variety of meds/supplements before they find which combination works for their particular case, and also avoid triggers until their systems settle down. This can take a lot of trial and error. For me, a low-histamine diet made a big difference right away. I also found regulating my nervous system through limbic system retraining (specifically the DNRS program) really important. In terms of mast cell stabilizing supplements, I found curcumin and quercetin helpful. But each person's needs will vary considerably. You can also try prescription drugs (ketotifen, montelukast, cromolyn sodium, etc.), over-the-counter drugs (H1 blockers like Claritin, H2 blockers like Pepsid), and many different supplements (DAO, vitamin C, CBD, nettles, etc.).
As for mold, you said you moved but that people are telling you that you might still be exposed. Has the new house been inspected or tested with an ERMI test (or similar)? Did you remediate your belongings as well - apply sealant to solid wood furniture, get rid of anything porous (upholstered furniture, mattresses, pillows, bedding, clothes, books, papers, etc.), replace all appliances with motors (including computers)? If not, then maybe people mean that your belongings are contaminated and continue to expose you.
That said, symptoms of mold toxicity and Bartonella can be indistinguishable, so it's difficult to tell which is causing issues for you. Maybe both! But I'm curious who is telling you that mold is still a problem, and why they say that.
A book that made a huge difference for me was Toxic by Neil Nathan. It explains so much about mold, Bartonella, and MCAS that was crucial to me figuring out how to get better, and it's easy to read.
Good luck, and keep asking questions!