u/agape48

Mold toxicity has changed my life. I always wanted to help other people, and now I want to help people specifically with this awful illness.

But I am still on the mend, so I'm not able to physically help others going through it - e.g., I can't help someone clean their belongings or take them out of town to a mold specialist.

I recently made a friend online who is across the country and is in the thick of the severe reactions and the brain fog -- I was in a similar place in 2024.

I can only help her virtually and it's depressing. I've looked up doctors for her. I've told her that I had the same symptoms. I've provided emotional support. I've referenced John Banta and Dr. Neil Nathan's books when she asked questions that were beyond my expertise. I've told her she can get well with the right help (both help to fix the house and her body)

But my new friend says that no one who lives nearby believes her that mold made her sick. And she isn't well enough to travel - at least not alone - which would open up possibilities for more doctors. Her kids don't believe her - if they weren't being assholes, they could step in and HELP HER get well. Good grief.

How do we all help each other? Do the well people stick around in the forums?

So I'm like: OMG, if I had 6 more months of healing behind me, I would just fly out there and take her to see the doctor myself.

I have this dream of creating a community of people who UNDERSTAND MOLD TOXICITY and support each other through this illness, but I don't know how to do create that. Or how else to help this poor woman who doesn't have the right friends at her side.

ANY thoughts welcome...

I'm putting out this community idea into the universe. Maybe something will come of it in time.

I do NOT have diabetes, although I am probably hypoglycemic.

I feel like I followed the instructions about placement. The Stelo is on the back of my arm between my shoulder and elbow - it's close to my shoulder than to my elbow. My shirt sleeve covers it up.

I put it in right before I ate lunch today.

I have felt REALLY bad today - it was hard to stay standing (I have POTS). About 1 hour after lunch, my glucose reading went to "Below 70" and aside from a couple of jumps to 80, it has read "Below 70" all afternoon. Matches how horrible I feel, but...

Can that also happen if it's somehow not placed correctly? I am fairly thin.

I don't have finger prick kits because, again, I haven't been officially diagnosed with anything.

What to do?

I take DAO and I can't find a good explanation of what mU vs. DHU is. I'm trying to compare these two brands:

Pure Encapsulations DAO Enzyme "providing 0.55 mU diamine oxidase" vs.

Seeking Health: 4.2mg of porcine kidney extract, Diamine Oxidase Activity = 30,000 HDU

I currently take the Seeking Health brand, but I want to know how to compare the strength of different brands. Thanks!

I am still kicking around ideas about how to help people with mold toxicity (after I get well). I'd especially like feedback from those who live in a metro area in the U.S.

1. Would you consider renting an apartment that was specifically designed to be low mold?

2. Would you be willing to live in a smaller apartment than what is typical size in exchange for keeping rent comparable to competition? I figure it will cost more to build and maintain a low-mold building, so I thought that instead of charging people higher rent, make each unit smaller.

I'm thinking about things like central dehumidifiers and higher rated air filtration (e.g., MERV 13 or higher, which I've never seen in an apartment). All of that will cost more to maintain.

Last year, I posted about what had helped me go from nearly bedridden to being able to walk 1/4 mile after living in toxic mold. A lot has happened since then, and I wanted to share currents thoughts on what has helped me the most. Here is my older post for reference, and it's all still true: https://www.reddit.com/r/ToxicMoldExposure/comments/1n0kq5l/my_healing_progress_and_what_i_wish_i_had_known/

If I were going to emphasize the top things that have helped, though, I would now have to add:

1. Be SURE you are out of mold. Old houses, bad remediators, and a poorly regulated industry are a terrible combination for your health. It took us 3 different companies and an entire year to get the house properly remediated. Initially, there was a leak into the crawlspace. We fixed the leak, and that was the ONLY easy part. Then, each remediation company claimed they had fixed the crawlspace, but it was only the 3rd company that got it right.

Plus, there were other things that needed to be done - for example, seal the boots where the HVAC ducts come into the house, and we installed heavy duty air filters and a central dehumidifer AND a dehumidifier in the crawlspace itself.

I'm still not a building expert, but my point is: It's your life at stake, so don't just blindly trust a remediation company. While John Banta claims that houses can often be remediated if you have the funds, my experience is that finding a company that is thorough enough is difficult for novices because we don't know what we don't know.

We didn't know how to evaluate these companies and whether they had done a proper job.

All I knew to do was gravity plate testing, which I learned about months later from Neil Nathan. I tested right after the 2nd company completed their work, and the mold counts went to almost zero. We thought I was safe. And I started to feel better... SLOWLY.

Six months later, I started getting mold symptoms again, so I put out more mold plates. They came back Too Numerous To Count in my home office, and I'm like WHAT THE ****? So we hire company #3, recommended by my doctor, and the owner says that he sees mold in the crawlspace, supposedly due to improper sealing.

[Side story] We had paid to have the crawlspace sealed. Months later, Dr. Donald Dennis told us to redo the first remediation and have the plastic wall cut DOWN. When that was done, it resulted in the gaps in the cement becoming exposed. And company #2 didn't notice, even though they are the ones that cut down the plastic because... the owner didn't inspect the work when it was "done." He just trusted his people, and they weren't thorough. No amount of money or litigation can get back the time I lost, so just we moved on to: Company #3. Company #3 seems to have fixed everything properly. [End side story]

So funny enough for me, getting the correct diagnosis wasn't as hard as fixing the house.

If your job is at stake or more importantly, your life, consider just getting the hell out (if possible) if your home has obvious risk factors like being old or having a crawlspace.

2. Clean/sort your belongings. We first moved to an apartment and brought only a few items with us. Almost everything we brought was non-porous, and my mattress had been encased (because of allergies) as soon as we bought it. So, I assumed the mattress was safe. My symptoms calmed down a bit - enough to know I was out of mold. We stayed there 3 months. Then, we moved to a different house and brought all of the stuff from the old house. I had a SEVERE reaction within 24 hours. SEVERE. I had insomnia, I started wanting to scream at my spouse with rage, my head was buzzing...

Despite everything I had read, I didn't take it seriously that the stuff itself could cause a reaction. I kept saying, "I'm just not that sensitive." hahaha, WRONG. When I packed up that old house, I had some mild reactions but NOTHING like what happened when we moved those same boxes into the new house. Shrug, I learned the hard way.

I hired a mold consultant for help with which possessions we could keep and how to clean them. She was great, and she's been through all of this herself in the past. She has a nuanced approach instead of "Just throw everything away." DM me if you want her info.

3. Get proper medical support. For me, this means using functional medicine with a practitioner who could also recognize and prescribe for MCAS. My post from 2025 is mostly about this aspect.

I can't emphasize enough that the order of operations is individualized. People keep asking me, "What helped you the most," and it worries me that someone might then try x, y, or z supplement without having a proper workup from a professional or understanding their personal genetic makeup and how all these things interact.

By the way, I generally dislike and distrust doctors, so it means something that I'm saying, "Find a professional."

4. Phiwaves Diamond - I am sensitive to EMFs. If you don't believe in this, move on please, or education yourself by reading "TOXIC" by Neil Nathan. He explains the science behind EMF sensitivity.

The whole point of mold toxicity is that we react to things that other people don't, so try being open minded and consider that EMF sensitivity could be real. Neil Nathan likes the Phiwaves Diamond because his patients have reported positive outcomes with it. I experienced more calmness within a day of starting to keep it in my pocket.

Again, I hope this helps someone, even one person.

I'm looking at Neil Nathan's chart of supplements that support detox pathways for various mycotoxins. It lists supplements that support a particular detox pathway and indicates whether the supplement upregulates or downregulates the process.

I'm in over my head here, but I want to understand it. Resveratrol helps with Alfatoxin B-1 detox and it's listed as (+). Quercetin helps with Alfatoxin B-1 detox and it's listed as (-). On the surface, this is confusing to me.

Is 1 or 2 more accurate:

1. Are these supplements primarily helpful by changing the regulation of the gene listed?
2. OR are these supplements helpful for other reasons, but he thought it important to note whether it upregulates or downregulates the gene?

Help! I really want to understand, and no, I don't have a biology background 😄 hahah

https://neilnathanmd.com/potentially-ground-breaking-information-for-treating-mold-toxicity/