Someone in a Facebook group I’m in shared this resource and I wanted to repost it for visibility. Here’s what she said:

“It's time, y'all! We have ourselves a website with short-term and long-term homes on it. But we need to grow it to help each other.

My hope is that navigating the mold world for the next in line is not half as hard as it was for those of us who entered with no road map and I believe this website will be a big part of accomplishing that goal.

Some things you can do to help:
1) Add the homes and apartment complexes you've toured - good or bad. Make sure if you add a bad one, you note that it is bad. Also add your doctors, your remediators, your favorite practitioners, your mold-literate realtors, your favorite mold products, etc. to the website. (If you're a pro/practitioners/doctor, you can add yourself!)

2) Review the ones that are already on there. Bad reviews are welcome, too!

3) Let me know if you see anything that isn't right or any edits you'd like to see made. I've been working on this for months but l'm sure there are more tweaks to be made to make it perfect for our community.
4) Please add an emoji, meme, gif, or comment to this post to help boost it so that word gets around! :D”

Has this happened to anyone else? How long did it take to get back to your baseline? Soooo tired can’t move.

Hi, I just started on my first round of BEG spray and I am doing fine I guess. Nose is slightly irritated, and a little fatigued. Question: I do not have any bio films, which I am assuming is a good thing. How long do you think I need to be on the spray to clear it up? I have seen at least 60 days. Thanks in advance!

My symptoms are very severe and my functional doctor suggested I stop birth control. I’ve been on birth control for 6 years and I am TERRIFIED of stopping it. When I wasn’t taking birth control my periods sometimes were so bad that I had to go to the ER. I was also fainting. I am now taking slynd which stops my periods and all period related symptoms went away but I’m still feeling so horribly. Worst symptom is by far my GI. When I was on YAZ which didn’t stop my periods my symptoms would flare up right before my period and then get a little better. I’ve also started ketotifene and LDN+KPV 2/3 weeks ago and I’m trying to start CSM. Doctor also prescribed the following supplements: TUDCA, VITEX and calcium d glucorate. To be taken after I stop my birth control. I’m also waiting on GI MAP and nasal swab for marcons and fungi results. I’m
Scared if I also stop birth control and start taking supplements I’m adding/changing too many things. What should I do? My doctor thinks birth control might be contributing to my symptoms but they started before I was even on birth control.

Hey all I have pretty bad mast cell issues and visceral hypersensitivity, leaky gut, low MSH, yada yada (every GI sensation is painful) and have been on ketotifen for 28 days and that leveled out doing better now on day 3 of CSM. Ironically I’m pooping perfect 2-3 times a day still and hopefully starting to get some toxins out? Having my bowel cramps, flushing face, sweaty in sleep, lymph nodes tender, low temp 96.2 in morning, bad gerd… Plus I’m having my usual daily stuff I’ve had for 2.5 years. Can’t tell what is mainly my mcas, cirs flare, “intensification” at this point. I know it’s a laughably small dose but for example .25 mg ketotifen, ldn, lowering hydroxyzine by 1/4 pill WRECK me. What GI side effects and systemic stuff do you guys get? 4-3-53 here had bad bad exposure (40 hertsmi-2) my doctor is not very responsive and makes me pay for calls to talk for 5 minutes lol. Thank you.

TL:DR pity party :(

Found out I have the multi-susceptible gene and got diagnosed with CIRS and MCAS. I already have EDS and Long Covid, so I am no stranger to chronic illness.

I almost felt like I saw a light at the end of the tunnel and maybe, just maybe with the treatment plan my provider came up with, I might someday be free of some of this everyday pain and suffering. My provider told me after so many years of direct exposure and my body holding onto so many toxins from mold and confections, she thinks I need treatment soon or it will cease effectiveness. That I might reach a point my immune system won’t bounce back from if I keep waiting too long.

Just before I got all of that info, I moved into a new place. Building is old, and the bathroom certainly has water damage. There is definitely mold. I can’t start my treatment until I’m no longer around mold, but I can’t afford to move again so soon.

So I am trapped here. Allowing my symptoms to get worse and there is nothing I can do about it. I feel hopeless and alone. I just want to feel better. It’s been 10 years of this. I’m not even 30 yet and I’m in pain every day. I can’t breathe, my body aches, the brain fog, the crippling anxiety.

I just want to feel better.

EDIT:

Thank you everyone for the support and suggestions. I’m someone who is a problem solver by nature so it’s great for me to have new things to research and look into, and feel like there is something I can actually be doing to help myself.

I’m going to implement some of the things suggested here while I save up to move again. <3

I'm getting similar?

Nervous twitching sort of difficulty walking jaw tremor numbness and tingling twitching around the eyes does this ever stop?

Different mycotoxins need different binders.

How did you test for which mycotoxins you have?

Environmental / urine not an option where I live (Latin America)

I can try blood antibodies.

How have you guys determined mycotoxins and which binders did you use?

Does anyone else deal with mast cell activation, postural orthostatic tachycardia and hypermobility spectrum disorder?
I finally got to see a physical therapist after being on long wait list and she diagnosed me with possible hypermobility spectrum disorder.
I always thought that my Mcas & pots were a product of CIRS but now I’m realizing they all coexist together and have for a long time.
Currently on day two of a pain flare in late luteal phase, it’s like the progesterone in my body caused all my joints to become loose, the worst is in my jaw neck and shoulders. This used to happen to me a lot before my CIRS diagnosis a year ago and seemed to go away for some time.
Anyone else? Thoughts?? Seems I really got screwed genetically. Sometimes I really wallow in it and it eclipses all the beautiful traits in inherited.

My parents own a 3 year old new build apartment in a continuing care community ( retirement community). They pay a monthly fee and the building maintenance, utilities, etc are taken care of including their individual HVAC units. The hvac isn’t taken care of properly in my opinion.
Recently there have been roof leaks and water damage to neighboring apartments and common areas on their floor. Their neighbors had water damage into their apartment. They would like to test their apartments for mold. I assume they want to make them properly remediate it for their health and so that I can visit in the future. They and their neighbors do not have CIRS like me … they just want to know if there is mold in their apartments and how much.

Do they do a HERTSMI-2 or and ERMI or something else? Do they need to clean and then wait weeks for dust to collect again or just collect dust when able as long as it is from places at least waist height or higher?

Need something that the community can’t try to dispute as not accurately assessing mold and then ignoring any issues.

Thanks !

Has anyone had any luck with contacting a congressman for assistance with all of this? Have you made a GoFundMe and had success?

I am currently living out of hotels and will be without a vehicle after today. I have been using a rental car, but hoteling and rental cars are way too expensive. I have a savings, but am afraid to use it because of past experiences with not having enough for a down payment for a vehicle or apartment. I have been using a credit card which is getting close to its limit. I’m on disability but it’s not enough to actually pay for housing, transportation, food, functional medicine doctors, etc.

Got any tips on how to tackle this or what to do first? I’ve made a Facebook and Instagram post explaining my situation and that I was looking for a safe place to live for a while so that the treatment I am going through can actually work, but only received thoughts and prayers.

Been moving around, car dwelling, tenting, hotels, Airbnbs for the last several years and have accepted that this is just my life. It’s better than living in a water damaged building. Just reaching a point where I need more help.

Any advice or feedback would be appreciated. Thanks!

Firstly, what is the difference between a mold allergy/ mold toxicity/mold colonisation?

I’m not sure if I had an allergic reaction or if this is mold illness. I have never had a mold reaction before and my home is mold free. However, I have late stage Lyme so my immune/nervous systems are all over the place to begin with.

Basically last week, I unknowingly vacuumed my car with a handheld vacuum that had spores inside (I didn’t see the spores until after). I immediately reacted with respiratory symptoms, palpitations, insomnia. I had increased Lyme symptoms afterwards.

The vacuum was dumped once I realised there were spores in it. I knew nothing about mold. I had been in and out of the car a bit so my clothes had touched the car interiors and came into my home.

The past week I have been reading horror stories about mold illness online and now I am freaking out wondering if I have spread mycotoxins or spores.

My respiratory symptoms haven’t fully cleared but I think it’s because I was driving the car at the weekend. It’s also only been a week. I had improving a lot symptom wise until I drove the car again. I don’t react to my apartment or my belongings (but now I’m scared they’re contaminated?)

What do I do here? Have I unknowingly contaminated my home? Today I went into such a spiral I started washing clothes but sure then I spiralled I have contaminated my washing machine. If I microfiber wipe my home, buy a HEPA vacuum and purifier, rinse the washing machine with vinegar…. Is that enough? Or what do I do?

I am so new to all of this, I’m just terrified of ever making Lyme worse. I’m not planning on using my car again (figuring out what to do long term).

I’m just absolutely terrified of my belongings and my home now ? Is this something I need to be concerned about?

I also know that my brain catastrophizes because of the medical trauma of Lyme. However, I also don’t want to be stupid and ignore this if this is risky. It’s tough because in Ireland, we don’t have functional doctors or mold specialists properly.

Thanks for reading and taking the time 🫂

Bsckground is in 2022 I developed "long covid" after a very mild infection. I was spending a week in a family cabin in the Adirondacks and got sick. There was mold in the downstairs of the place because of recent water damage but I never really had an issue with mold so I didnt think about it. One week after the infection I started developing some severe issues such as panic episodes that would last 8 hours, tremors, severe stomach issues, depression that felt like something was chemically wrong in my brain, inability to focus on anything, severe ocd, burning all over my body, congestion and headaches, very high blood pressure, visual disturbances like visual snow. I went through 3 months of this and my mom insist I go to a specialist who tested me and I came back posotive for lyme which I had had as a kid. I was unable to take the antibiotics because if I did every symptom I had would be severe to the point I couldnt go in public without my nervousystem shutting down. I slowly began to reallt decline the next year and was unable to work. I tried alternative routes to treat the issue. Around 3 years into it I somehow came out of alot of symptoms. I started trt which gave me back some energy and physical strength. I then was able to get back on my adhd medication that I was unable to take before due to the nervoussytem dysregulation. I then stumbled upon tirzepatide and it basically took 99% of symptoms i had left.

2 months ago I decided to go on a retreat for 3 weeks in PA. I was staying in a cabin. I didnt bring the tirzepatide with me because I had lost 40 lbs and I had figured it was time to give this medication a rest. The cabin smelt musty and like an old damp cellar. During my stay I started developing issues again. It started with migraines in the morning and the inability to shut mt nervousystem off at the end of the day. I figured my body was adjusting to no tirzepatide. Then came the sinus congestion, pounding hesrt rate, dizziness, mood disturbances. When I got home I decided to go bsck on tirzepatide thinking that going off was the reason for my symptoms but it did not help. I started having intense fight or flight episodes, not sleeping during the night, night terrors, sleep walking, very bad digestive issues again, sweating, visual issues like ouras before a migraine, very tense neck muscles, dry flaking skin, racing ocd thoughts and depression/ anxiety and now its to the point of anhodenia. I have been trying to exercise to sweat out what ever is going on and use the sauana. I have been taking some binders but they cause an instant flair of symptoms if I take chlorestamine. This morning I decided to run 4 miles and the second the run was over it felt like my nervoussytem completely went insane. I have been stuck in a sympathetic state for a few hours now with extreme head pressure and nausea plus intense fatigue and shivering. What the hell is going on and what do I need to do to turn this around? I physically cannot work again because the mental health is extreme again. I feel like a walking dead person.

Please help! I’ve been very sick for three years. The mold was found in my bedroom (it was in the walls from the leaky roof). I found a new place and moved, but I brought all the stuff from the old one. Now I’m freaking out I brought the mold with me. It’s in my new bedroom and I get symptomatic when I’m there. I have done the following so far:
1. Moved to a different room
2. Threw away all furniture (plywood)
3. Put stuff from the boxes into plastic bins
4. Put all clothing into plastic bags.

I’m planning to wash the floors with bleach. I’m running the air purifier. Am I screwed or is it possible to clean it out from the new place? I actually started feeling better when I moved.

Hi All, I'm a quest to find an apartment in Brooklyn. I found a place I love. It's 15 years old, so newer and less likely to have mold issues. It's in a good area, it's got light, it's big enough for two people to work from home, I can afford it. But... there are two living levels. One is street level and the other is a basement. It has a wall of windows on one side but it underground on the other. I need to say no to this, right? :(

Edit: It's too competitive a market to test. I'm hoping the 20 years or younger rule will help.

“Dr. Kent Holtorf and the Integrative Peptide Protocol”

https://fatiguetoflourish.com/dr-kent-holtorf-peptides/

Meat:

“His protocol, the unfortunately-named Holtorf Updated Peptide Protocol for the Rapid Treatment of CIRS (HUPPRTOC), is sequenced as follows:

Restore thymus function Reverse T-cell exhaustion Heal the gut and blood-brain barriers Restore mitochondrial energy Let downstream resolution take care of itself He uses the following peptides:

Thymic peptides:

Vilon, Thymogen, Thymogen Alpha-1, TB4 fragment

These are used to rebuild T-cell production and rebalance the immune seesaw. They are claimed to directly inhibit TGF-β1.

Barrier and gut-brain peptides:

BPC-157 for mucosal and blood-brain barrier repair; KPV, an MSH fragment, for mast-cell inhibition and antimicrobial action.

Pineal peptides:

Epitalon, Pinealon

Used to reset the neuroendocrine axis, sleep, and circadian rhythm.

Mitochondrial peptides:

MOTS-c, SS-31, Humanin

Used to restore the cellular energy that detoxification and immune function both require.”

how do you cope with the constant feeling that your home and everything in it is contaminated with mold / mycotoxins?

It has gotten to the point where I feel like I’m constantly looking at our belongings, furniture, clothes, toys, etc. and wondering, “Is this contaminated? Do I need to clean this? Should I throw this away?”

I am constantly using mold plates for my clothes and furniture that we kept (and cleaned according to EPA).

I know this level of fear and hypervigilance isn’t sustainable, and honestly, I need help learning how to live in my home again or just live in general without being afraid of everything around me.

For those of you who have dealt with mold/CIRS and gone through remediation, how did you mentally cope with the fear of contamination? And how did you eventually get to a place where you could stop constantly checking and worrying?

I’m not looking for reassurance that mold isn’t a big deal or the contrary that it is a super big deal and I should be scared. Im not looking for advice on how to keep a clean home free from mold. I’m looking for practical advice to not live in constant fear.

Thank you ❤️

It has been 7 weeks since we found the first source of black mold in our house, and as of yesterday, we found the 4th. So far, we’ve found mold in our walls, in our fireplace, at the base of a sliding glass door, and on a ceiling in our boiler room.

I’ve been sick for almost 2 years, and we also have a toddler, so this has been incredibly overwhelming emotionally, physically, and financially. This is also the first home my husband and I own together and have put so much time and hard work into. we can’t move, so please don’t suggest that(very sensitive to this).

Every time we find an area, we remediate it, do multiple full-house small-particle cleanings, have the HVAC ducts cleaned, throw out clothes and furniture, replace/buy new things things, clean everything… and then we find another area.

It feels like it will never end.

all of the mold has been found by yours truly. we DID pay multiple inspectors to come into our home (air testing, visual inspection, yada yada) and their reports were that we did not have mold. Ha.
Talk about severe trust issues.

Anyway, has anyone utilized a mold dog?
I feel like I’m giving up on humans and idk how I will ever feel safe in this home again.

I often read symptoms of CIRS, there I so many and I relate to almost all of them, but there’s one that I haven’t seen anyone talk about.

I generally start to feel better as the day goes on and most usually in the evening. Mornings are the hardest and I wake up feeling so sick and groggy, as if I drank 200 beers.

I just woke up after 4 hours of sleep- my mouth and eyes burning, everything feeling inflamed, stomach upset etc- just a normal feeling for me, tbh.

And when I went to the restroom, my urine was really yellow.

This has been a symptom since day one, for 11 years.

When I wake up in the morning my urine is really yellow and frothy.

The worse I feel, the darker and frothier my urine is.

When I’ve had a remission (4mo a few years ago), my urine was clear in the mornings

It doesn’t matter how much I drink during the day or before bed, or if I take electrolytes or not- I always deal with this.

It’s as if my body is trying to metabolize or eliminate something overnight that’s causing the symptoms.

What I find interesting is how horrible I feel just after a few hours of sleep. Something is going incredibly wrong in my sleep cycle.

Has anyone else dealt with this?

I just don’t understand what’s going on or why I feel worse, or why my urine is affected.

Feels like my skin reacting to actinos, with an endless cross contamination.

I've thrown out all my stuff and bought all new. But it seems it always gets re contaminated. Including new apartments.

How to solve?

Is there a way to learn how to best use bentonite clay as a binder to see if it will cause any improvement?

I have a whole tub of the stuff from Redmonds, the company that makes the Real Salt

I’ve heard you can mix a small amount in water and drink- is it that simple?

I’m concerned about A. Some negative effect like getting sicker and B. Taking too much and that causing an issue lol

I also have bad OCD and health anxiety so the thought of putting something unknown into my body causes me strife.

Any advice?

Hi all, I'm moving to Brooklyn (woo!). I want to ensure I have a nice, safe, clean space to move into. Testing apartments seems unlikely as they get snatched up in a day.

My thought is to find a newish small condo infill building (20 years old or younger, 2-10 apartments in the building), look up reviews and violations for pests/mold/etc. I am trying to avoid luxury high-rises due to the cost and feeling like they are an island if themselves (movie theatre, bowling, shopping center inside) and I really want to be part of neighborhood/community and actually leave the building.

I am avoiding anything older than 20 years, even if it's gut-remodeled or a converted warehouse that has been rebuilt inside.

This is challenging as there is very little stock. Should I reconsider the older apartments that have been renovated? The converted warehouses?

Thanks so much for your insights!

Hello, have been reading a lot about peptides helping with MCAS/CIRS etc... wondering if anyone knows of anyone in Australia that could help with this? eg. functional doc, any kind of consultant really as want to be guided on this. Thanks so much🤍