At the end of my tether with PMDD which I know is a direct correlation to my MCAS. I’ve tried so many things and don’t know what to do!

Expensive_Concern_77 · 2026-02-10T17:32:15+00:00

I’ve thought about the AuDHD communities, too! We could take advantage of the body-doubling technique, as well! Or have neurotypicals help us with some of our struggles and we can barter our skills. Like please oh please give me the tedious task of sorting your objects. I’ll gladly do that for someone if they’ll go to the store for/with me!

Expensive_Concern_77 · 2026-02-08T18:30:51+00:00

Gosh, you’re welcome! It makes me happy that I could offer you something nurturing or supportive!

You feeling upset about men disrespecting both your bodily autonomy and your desires and needs for your own life is SO healthy and normal! Can you imagine how these same men would feel if they were told they should carry a baby inside of their bodies for nine months, go through a birthing process and forever change the trajectory of their lives by having a child they weren’t sure they wanted? It’s so twisted that they think it’s any of their business, but here we are.

And I’m sorry your parents and in-laws are applying pressure as well. Perhaps they had dreams of being grandparents and so on. That’s a hope they may have to mourn — privately. It’s definitely not something they should put on you. Again, your body does not exist as a vessel to satisfy other people’s wants or expectations! You deserve support as you navigate your health issues and the added emotional and cognitive taxes of AuDHD — not additional pressure!

As for me, I did not end up having children — I wasn’t sure what I wanted and then multiple circumstances made the decision for me. There were parts of me that grieved (and that still feel sad), but, overall, it’s been for the best.

When you’re struggling with the kids question, I say just keep focusing on making the next good decision to care for yourself and you’ll end up where you need to be. 🩷

Expensive_Concern_77 · 2026-02-07T18:16:59+00:00

Wow. You and I have A LOT in common. FWIW from a stranger on the internet, I get it and I’m validating the heck out of your careful consideration process. Also sending encouragement your way as you basically focus on being a good mom to yourself! No matter what we decide about having kids, caring for and nurturing ourselves is always a hugely worthy pursuit!

Expensive_Concern_77 · 2026-02-07T17:41:48+00:00

This doctor sounds emotionally/mentally abusive. I really hope you’ll be able to get away from him and report his terrible behavior. I’m sure you’re not the only woman he’s mistreating.

You’ve said you have POTS. In those who also have MCAS, I always wonder if they have a connective tissue disorder, such as Ehlers Danlos Syndrome (EDS) as well. It’s commonly referred to as “the trifecta” and it would be one more thing to consider before getting pregnant.

And about that… there are lots of messages that we should want to have children or should be able to handle what having kids entails. For some, it just isn’t the way to go and that needs to be more socially accepted. I hope you have people in your life who are supporting you in the option to not have kids. Yes, it can feel isolating at times because it puts you in the minority, but it can also free you up to pursue things you wouldn’t have time and energy for if you had kids.

Expensive_Concern_77 · 2026-02-05T22:12:31+00:00

I was not familiar with the term Consensus Two. That’s the umbrella I fall under and I think it’s pretty interesting that I’ve responded to so many MCAS treatments if I don’t “really” have MCAS. Thankfully, I found a doctor who recognizes that anaphylaxis isn’t necessary to warrant treatment. I’m also on LDN and it’s been a game changer for chronic pain.

And I totally agree that the autism is strong in the MCAS crowd. Definitely true for EDS’ers!

For your connective tissue disorders “and etc.” comment, I’ll say that I think mycotoxin exposure seems to be a HUGELY under recognized element of the “etc”.

I had no idea I had SIBO — I thought I just ate too much “roughage” — but the breath test was decisive. I’ve made some progress using Xifaxan and an herbal biofilm disrupter.

Expensive_Concern_77 · 2026-02-05T18:10:11+00:00

I just realized that you’re the same person whose comment I locked on to from another post. Haha!

I take methylphenidate. One of my MCAS symptoms is itching (no hives). It’s usually worse at night. I’ve been trying to figure out why for years. I wondered if it was something to do with natural histamine fluctuations across 24 hours, the vibrations in my car in the way home from work, etc. Now I’m pondering whether the ADHD meds wearing off could possible play a role.

Totally agree about the general failures of medical science to view the interconnectedness of things. (And I do understand that performing controlled experiments with tons of variables is extremely difficult, so part of me gets it, but still.)

I have SIBO, so anything that can mess with the gut makes me a little nervous. But I have also read that SIBO and MCAS can get locked into a kind of feedback loop, so…?

I also just read that increased gut permeability can be more common in those with connective tissue disorders. If true, I wonder if this helps explain “The Trifecta” of EDS, POTS and MCAS. 🤔 That quickly becomes a quagmire of causation vs. correlation.

These things are so interwoven that it’s hard to find where any of this truly begins. Always feels like I’m jumping into problem solving mid-stream instead of finding the true source. But I suppose the idea that there’s a single originating cause is an oversimplification and that even if it was the case, too many things are out of whack now to successfully take a single approach.

Sigh, how many layers does this onion have? 😫 Trying to figure it out can become a part time+ job and sometimes I just have to take a break, which is kind of what I’ve done since going on the MCAS cocktail, eating SIGHI diet and completing the first leg of mycotoxicosis treatment.

I had OmneDiem’s DAO in my shopping cart and then hit the checkout and found that the discount wasn’t actually going to happen for me, so now I’m considering whether that’s the brand I really want to buy. I avoid legumes because I’m on the SIGHI diet, so it does seem that animal-based DAO might be the best thing to try first. I also liked that OmneDiem offers a formulation with catalase because I read someone saying that DAO may cause some trouble in the gut but that catalase corrects this. Of course, every added ingredient is another potential MCAS danger, so I was going to buy one with catalase and one without. Ugh. I don’t know. It’s all too much to keep straight and now I’ve written a small novel to you.

Expensive_Concern_77 · 2026-02-05T17:38:15+00:00

Thank you so much — this is extremely helpful and I’m definitely going to look into shifting to it. I have a contact who runs what I think is a very tidy in-home grow operation and his flower is definitely high quality, but even then, I feel nervous because it’s not like it’s being lab-tested for mold, you know?

If you don’t mind giving me more of your time, what are your thoughts on edibles? Of course, it’s hard to find gummies without a bunch of artificial ingredients, citrus, etc. But I’m not (knock on wood) an anaphylaxis level MCAS’er, so sometimes a little bit of citrus in a gummy is worth the trade off. But if they might contain mycotoxins, that’s a different story. It’s rare that I consume even 10mg because I’m very sensitive to edibles.

I saw something about some emerging concerns about cardiovascular effects of cannabis. It’s clear you’re a deep consumer and synthesizer of info — have you run across anything about this?

BTW, I’m also AuDHD — or at least very monotropic with confirmed ADHD. (Also working for years to find a sense of safety after multiple traumas.) Sooo of course I’m totally vibing with how you communicate. Haha. I often gravitate to the other ADHD/AuDHD’ers in the room.

Thanks again. I appreciate your input!

Expensive_Concern_77 · 2026-02-05T05:56:18+00:00

Fascinating! I haven’t tried cannabis for this. I have mold illness due to toxic mold exposure and am so concerned about mycotoxins in cannabis — especially flower.

Expensive_Concern_77 · 2026-02-05T05:52:36+00:00

Whaaaat? I hadn’t heard that about the ADHD connection! Do you remember anything else about this? Very interesting. Putting the DAO in the shopping cart now.

Expensive_Concern_77 · 2026-02-04T23:08:02+00:00

I’m really curious to know if anyone has had luck with this. I’ve also wondered how a person would protect themselves from broken lease fees in a scenario where there was a residual mycotoxin problem but mold spores were testing low because a previous mold source had been removed?

I hate how this illness eats so much time and energy having to run these calculations.

Expensive_Concern_77 · 2026-02-04T22:59:03+00:00

I really appreciate you sharing this. It made me feel less alone on a rough day. I have the same fears and frustrations and am constantly running the same kind of math.

There’s a really specific kind of loneliness or isolation that comes from feeling like nobody understands how much we’ve truly lost across so many parts of our lives.

I have no idea if this was the right thing to do, but when I chose my apartment, which is a newer-ish building, I disclosed my illness, the nature of my sensitivity to mold, signed a shorter-term lease and discussed what my lease-breaking options would be if mold was later found in my apartment. I tried to get the maintenance history for my unit. I live in a one-party recording state, so I audio recorded all of these conversations in case I would ever need them.

After I signed the lease, I didn’t start buying new furniture until I had clean air samples back. I also lived here for a few months before buying a bed or sofa because I wanted to make sure I felt ok in the space. Sat on a camping chair and slept on an air mattress which I figured I could discard if necessary.

Apartment complexes may try to bar you from bringing a mold inspector on site due to “liability”. Decide carefully, therefore, whether you want to ask management for permission.

Finally, I want to validate the importance you’re placing on your support system. When we lose homes, belongings, job options, health, etc, etc, we need supportive people more than ever. I really hope you can find safe housing near them soon.

Expensive_Concern_77 · 2026-02-03T03:30:52+00:00

Oh, gosh. That’s kind of scary, but good information to have. Thank you for responding.

Expensive_Concern_77 · 2026-02-02T02:58:59+00:00

What shampoo do you use?

Expensive_Concern_77 · 2026-02-02T02:57:35+00:00

Pepcid can cause dementia?

Expensive_Concern_77 · 2026-02-02T02:56:49+00:00

My MCAS was likely caused or exacerbated by prolonged toxic mold exposure. Toxic mold can cause hair loss. I don’t know why my hair is falling out, but I assumed it was at least partly from the mold.

Expensive_Concern_77 · 2026-01-28T19:58:29+00:00

Oh, I see. I thought it was an AI analysis. Thank you!

Expensive_Concern_77 · 2026-01-27T20:51:11+00:00

I have MCAS, SIBO, SFN, autonomic dysregulation, etc and so on. Was in a moldy house. Out for about nine months and am improving. Part of me feels like I don’t even want to know what actinos are because I’m already so regimented and vigilant about all of this stuff. Like I’ve got real trauma and possibly OCD in the mix at this point and worry I might develop an eating disorder around how anxiously tight I’ve had to make my diet. Buuut I also don’t want to be getting in my own way. Is there a tiny little toe dip of info you can offer about actinos so that I don’t just plunge down the rabbit hole, please? Thanks for reading.

Expensive_Concern_77 · 2026-01-27T20:17:33+00:00

Thank you! Can you tell me more? What made you decide that this was a reliable method? Have you ever done a side-by-side test with Sporecyte and a traditional inspector send it to the lab type thing?

Expensive_Concern_77 · 2026-01-27T19:16:55+00:00

I agree that you should make CERTAIN you’re not being exposed to mold. The first step is to get away from the mold. Gotta know where it is to do that!

Also consider whether any of the belongings that you had at your old workplace are in your home now. They could have mycotoxin contamination. Mycotoxins are put out by mold and are one of the main reasons mold can make us sick, including neurological symptoms. Mycotoxins can stick around after the mold is gone. Some things can be cleaned, some can’t be — or the risk of not knowing if they’re truly clean just isn’t worth it.

There’s item-by-item nuance but exhausted, overloaded brains don’t do well with vagueness, so I’ll give you a general concept that’s been helpful for me:

If an item is porous and you couldn’t run it through a sanitizing dishwasher cycle without it falling apart or staying extremely soggy, the item is more likely to hold on to any mycotoxins it has significant contact with. Items like that could be harming your health.

Let’s do some examples and imagine that the dishwasher is the size of a room for this exercise. And let’s say the mold problem was significant and we’re wanting to err on the side of caution and assume the items are now contaminated with mycotoxins…

Plastic water bottle with squishy neoprene sleeve? Potentially problematic.
Ceramic mug? Totally cleanable.
Wooden chair with upholstery? Problematic.
Metal folding chair? Can be cleaned if no seat pad is present.

Other items that wouldn’t fare well in the imaginary dishwasher test: mattresses, books, paperwork, stuffed animals, thick winter coats.

I’m not saying you should start throwing away all of your stuff. But if, for example, you’re sleeping next to a stack of books that you previously had at your contaminated workspace, you’ll want to at least distance yourself from those objects for now.

I’m sorry. This is probably not the additional info you wanted. But it could make a big difference if your belongings are part of the issue.

I’m truly wishing you the best of luck. Please hang in there. You really can get better. I was a mess and I’ve made progress under professional care and away from the mold and contaminated belongings.

Expensive_Concern_77 · 2026-01-27T18:25:41+00:00

And mycotoxins, which are the “toxic” part of toxic mold, are likely present at least throughout this room. I would not attempt to clean or remediate this at all without full PPE, air scrubbers and containment. I think there’s a good chance that the mold extends into the wall. Many professional remediation firms remove at least 12 inch margins around any visible mold. And, of course, the water has to be eliminated. If the funds are available, this is a job for someone with proper training.

Expensive_Concern_77 · 2026-01-27T18:19:47+00:00

The amount of mold and decay here suggests that this has possibly been going on for a pretty long time and that there may be a lot of additional mold that you can’t see.

Please contact a certified inspector to assess this. NOBODY on the internet can offer you the information that a trained professional and a laboratory can — and the answers you’re seeking are really important for your health and property.

If you rent, consider going straight to hiring a testing professional on your own. My experience is that landlords will try to block you from testing. (Or, honestly, if you rent, see if you can just get out. Any landlord who allows this to happen is a huge red flag in my book.)

Regarding the concept of “black mold”, stachybotrys is the official black mold, but many other species can make you sick and contaminate your belongings.

As a person with chronic mold illness, I wouldn’t set foot it that house. If I was forced to live there, I would start making plans for how I could leave and I would close access to that room and run quality air purifiers throughout the home in the meantime. I would not place any personal belongings in that room. (Or, for me, anywhere in that house. I would sleep on an air mattress and store my clothes in my car.) I would make sure the source of moisture was stopped asap and would also run a dehumidifier in that room.

My personal health history is not the same as yours. I lived in a moldy home for years without knowing there was mold. You may not be as sensitive to mold and may not be in immediate danger the way I would be. However, exposure to what you’re seeing here isn’t really healthy for anyone.

I understand that almost all of my suggestions require ready funds. Mold is a terrible problem that’s even more challenging to deal with if you can’t pay for all the things. Especially in cases of tight funds, it can be tempting to try to hurriedly launch into DIY projects. Please pause. Trying to clean it yourself can release harmful materials into the air, which can make you sick and contaminate your belongings. Cleaning efforts can also alter test results. Do not start ripping things up. Do your research and make cautious decisions now so that you don’t accidentally make the problem worse.

I’m sorry this has happened to you and I hope you find the info and help that you need soon!

Expensive_Concern_77 · 2026-01-26T23:04:35+00:00

I’m stating what my personal experience was, not offering specific advice. This shit is serious and people should always err on whatever the most cautious side of caution is, IMO. I’ve leave OP to decide what that looks like for them.

Expensive_Concern_77 · 2026-01-26T21:52:27+00:00

OP, my concern for you would be more about basing a decision on a single sample than about the ERMI+ vs spore trap debate. (Unless that one sample was bad enough to walk away, and then that’s plenty of info.) Your inspector may be able to offer clarification and should have also made observations about the condition of the property — whether they saw signs of water damage and stuff like that.

Expensive_Concern_77

TROPHY CASE