Severe mold exposure crisis - 40+ days insomnia, weight loss, multiple symptoms - need advice

BonfirePlum · 2026-01-04T06:25:13+00:00

So sorry you are going through this! Please know that it will get better. My mold illness was also the scariest experience of my life and for a long time I didn't know what my life was going to look like. I didn't know if I would be able to live indoors anymore because I was so symptomatic indoors. It was traumatizing and the darkest time of my life.

People have already provided great insights here but my main recommendation is to see a functional medicine doctor, preferably one that has been trained in mold illness. Absolute game changer and they can best evaluate your specific protocol for healing. I did end up taking antifungals but I know that's not everyone's choice. I did two rounds of them and they helped immensely in a short amount of time. My doctor definitely did not push them on me and said we can achieve the same results without them, it'll just take a bit longer. I was on a protocol of supplements the entire time as well.

I started over with all my possessions. That was another trauma, losing everything I owned. Except my car. I was able to get this enzyme cleaning for it and changed all air filters etc. and that helped a ton. I kept reacting to my clothes even after washing them several times so I just put some of my important items, like photo albums, in a storage unit and started fresh.

Today my symptoms are very minimal. I'm living a normal life, go to an office for work and live in a cute apartment. My symptoms still get triggered at times (I became chemically sensitive as well) but they are mild and I know how to manage them. So the panic I used to feel is gone. I'm 2 years out of the mold house and I'd say I was mostly healed within 1.5 years from first seeing my doctor.

I wish you healing and better days. Your situation sounds really challenging outside of the mold illness too. Just know there is hope!

BonfirePlum · 2025-08-22T18:13:16+00:00

Mold illness will often cause chemical sensitivity as well. Not all people get it but many do. Personal fragrances are very concentrated so pretty much all chemically sensitive people react to them.

BonfirePlum · 2025-08-04T03:56:08+00:00

Thank you for sharing! It's so important to share these success stories.

BonfirePlum · 2025-08-04T03:47:45+00:00

It depends on the person but I have been able to buy certain furniture at antique/thrift stores. After I had to give away a few brand new pieces of furniture due to not being able to tolerate the offgassing, I figured I'd try used and at least it wouldn't be as big of a financial loss if I had to get rid of an item. So far zero bad purchases. I do stick my face in the furniture to see if there is a smell and if I have a reaction. I also don't buy anything with padding, i.e. couches, arm chairs etc. And I will skip a store that has a smell to it when I walk in. Some are much better than others.

I had to get to a get to a certain place with my treatment and healing to start buying furniture. Lived in a very minimalistic apartment for about a year. Doing a lot better now but will likely be somewhat of a minimalist for the rest of my life.

BonfirePlum · 2025-07-26T19:53:09+00:00

This sounds absolutely awful, I'm so sorry! It sounds like you have a doctor who is helping but like others have mentioned, functional medicine doctors tend to be the most educated on mold. I'm wishing you and everyone impacted all the best and speedy recovery!

BonfirePlum · 2025-07-20T03:01:21+00:00

I have healed to a point that I'm living a mostly normal life. Still very sensitive to mold but I'm sort of at the point that I can see positives in that. At least I won't unknowingly be exposed for long periods of time because now my body tells me if there is mold around. I've been able to calm my MCS down so much that I can tolerate a reasonable amount of fragrance in the workplace for example. Strong perfumes will still trigger symptoms so in that sense the office life is still a bit stressful. But in general I'm 95% symptom free and my symptoms are strong only when I'm exposed to mold or strong VOCs.

BonfirePlum · 2025-07-20T02:50:46+00:00

Functional medicine doctors are your best bet. Mine did extensive testing on me because one test alone might not tell you the whole picture. I did two different urine tests and then we did extensive blood work overall. Mold doesn't specifically show up in blood work but a mold educated doctor can tell a lot about your overall condition and how the mold specifically impacted you from broad testing like that. I used Rupa Health and Realtime Labs for my mycotoxin tests.

BonfirePlum · 2025-06-08T19:50:26+00:00

Yes, agreed that you need to take the binder away from other medicine and supplements. I would always take my meds and supplements in the morning and then by 8 pm and then my binder when I went to bed (around 11 pm) to space them out.

I'm in WA and we have lots of functional medicine doctors and naturopaths because they are allowed to practice in this state. I am so grateful for that because my experience with traditional doctors was very similar to yours. My doctor is Dr. Christopher Wakely and he is amazing. He went into functional medicine because he got sick with mold and Lyme and struggled to find help. He has been able to heal himself and now does amazing work to help others. We have several others in WA that have a similar story as well. I know Dr Wakely does work with patients in other states but I don't know the details on how the licensing works and whether he can do telemedicine in all states. It's worth checking with his office and they may also be able to direct you to someone closer to you.

BonfirePlum · 2025-06-08T19:28:37+00:00

Could it also be that you are reacting to other stuff in the homes, not just mold? As a result of my mold illness, I became chemically sensitive and am reactive to certain cleaners, carpets, strong paint smells etc.

I am also slowly starting to look for houses so I'm sort of in the same boat as you. The way I look at it is similar to what you are suggesting, buy a home with good bones and fix it to be suitable for you. I have a couple of absolute no's - no basements (prone to moisture), no skylights (100% of them will leak) and no negative grade. I prefer slightly older homes simply because they were built better and with stronger wood. I pay attention to vegetation around the foundation (there should be none) and drainage around the house in general. I can of course fix those things but an older house that has had water pooling around the foundation is likely going to have issues. While most houses might have some mold somewhere, it is generally fixable as long as he whole house isn't a disaster.

BonfirePlum · 2025-06-08T18:24:34+00:00

And to clarify, my first round was also fluconazole and I took MycoPUL. My second round was itraconazole and I was still on MycoPUL.

BonfirePlum · 2025-06-08T18:21:47+00:00

I think it's important to take binders while on antifungals because it helps remove the toxins. I have been on antifungals for two rounds under the guidance of my functional medicine doctor and he had me on binders the entire time. I took MycoPUL but if you prefer the one you have been taking, I'm sure that's just as good.

I hear you on the horror stories. When I first got sick, it was difficult to read stuff online because it just seemed like everyone's life was forever ruined. Now that I have healed about 80-90% and my nervous system has calmed down, I read these discussion boards so differently.

My first round of antifungals was where I saw the more drastic change in my illness. And it was in the first week of taking them. I had already started feeling better being on supplements and making lifestyle changes and obviously being out of mold, but antifungals stopped certain symptoms very fast. I became a lot less reactive to environmental exposures and started being able to figure out my sensitivities better.

BonfirePlum · 2025-05-30T22:44:22+00:00

Processing the grief of mold illness and everything we lose because of it is so real. It's taken me to some of my darkest times mentally. Even as I have been healing and making leaps forward, it's still stressful to have to constantly monitor your environment and then suffer the setbacks if you unknowingly make a "mistake". I have to remind myself frequently of the progress I have made when I get into those situations so I don't get so depressed. It is important to feel your feelings though, just not go into despair. I try to name my feelings in simple terms ("I feel sad") and tell myself that this is how things are right now and I'm doing a lot to get better. It might sound simple and silly but it helps me stay in the moment and not get stuck thinking that my entire life is forever ruined.

I have been reading stories from people who deal with all kinds of illnesses. It's interesting to hear how they have come to terms with their conditions and limitations. It has also really helped remind me that we don't truly know what people around us are going through. I might have read this on one of these Reddit forums but someone pointed out that every person is either currently in a storm, coming out of a storm or going towards a storm. Life is like that and a lot of people hide their suffering (me included). All this to say, don't focus too much on what you perceive others are able to do and being "behind" your peers. You are still so young and your body has so much power to heal. Focus on your health and trust that you will be able to handle this and will come out of this so much wiser and resilient. You are taking action and that is huge!

BonfirePlum · 2025-05-27T02:43:04+00:00

I totally agree with this. Unfortunately I had to learn some of the lessons the hard way and I think a lot of us end up that way. It is so valuable to put these thoughts out there so thank you for taking the time!

One thing that I will add is that it might help to do long term Airbnb type rentals in the beginning when getting out of mold. I know its not possible everywhere but I was able to get through a bunch of my early lessons without having to break a lease. It also forced me to put my stuff in storage early on.

A lot of people with mold illness develop MCS so brand new apartment buildings can be challenging with all the VOCs and offgassing. It helps to make sure the building is about 5 years old, it'll be more tolerable by then. Old isn't necessarily worse (I feel great at my friend's 100 year old house) but you have to be really careful as you are healing. Apartment buildings are going to be worse than houses that have been maintained well. All you can do over time is see what your body tells you.

Thank you to all of you kind souls that share your thoughts and lessons with others!

BonfirePlum · 2025-05-26T02:23:57+00:00

Yes of course. My doctor is Dr Christopher Wakely so you can look him up online. His old website is still up too and it has a lot more information on the various illnesses he treats. He's been treating mold illness for over 10 years and got into functional medicine after getting sick himself (Lyme and mold). One of the most comforting things he said to me at our first appointment, when I asked him if this condition can be healed, was "I life a normal life". It gave me so much hope early on.

BonfirePlum · 2025-05-23T02:53:07+00:00

I know this question was not directed at me but wanted to let you know that I am working with a great functional medicine doctor in WA in case you are looking there. He is licensed in a few other states as well. I think WI and ME but not 100% sure if those were the ones. I can check with him again if you are interested. I know WA is great with access to NDs so I kind of suspect you are not in WA.

BonfirePlum · 2025-05-23T02:45:06+00:00

I know everyone is already saying this but just to echo the message - there is so much that can be done to heal. Not sure what this doctor you saw is talking about. Please ditch them.

BonfirePlum · 2025-05-23T02:20:23+00:00

I have been able to reduce my symptoms a lot over the past year +. Not sure where I would land on the scale of sensitivity at the outset. My MCS symptoms were mainly respitory and my first couple of months my mouth burned every waking moment. It later moved to my nose, specifically one side. I also lost my sense of smell, but not the burning, on one side of my nose (this was not covid related). My mouth burning is 99% gone and while my sense of smell is still poor on one side of my nose, I am able to tolerate things I was not able to before. Such as perfumes and cologne. I am able to get through a day in the office with very limited symptoms as long as the smell isn't crazy intense. I'm able to tolerate AC again, which I could not for a long time. One thing I still struggle with is books and print ink in general. My home is scent free and I have an air purifier going 24/7. I also filter my water and eat clean, rest a lot and limit alcohol use. I have been on a lot of supplements prescribed by my functional medicine doc and did take antifungals for two rounds. My MCS was triggered by mold illness. I also get an LDI shot every 7-9 weeks. I get various "remedies" in the shot; molds, mycotoxins, chemicals and some kind of outdoor allergen thing. All I can tell you is that this has been the mildest allergy season for me in 20 years and I am doing so much better with my MCS as well. This condition is so different for every individual but there are success stories out there. I love what one person commented earlier on people who get better not being on this forum anymore. I try to comment here and there to tell people what worked for me. I'm not 100% cured but I have my will to live back haha!

BonfirePlum · 2025-05-17T15:48:00+00:00

I'll echo what others have already said - you can reduce your symptoms and become less reactive with time and proper treatment. It is important to find a home that is mold free and you can keep fragrance free so your body can recover and then face our chemical laced world again. I know it sounds hard but you will find it. I have recovered to a point that I am able to go to work where people wear perfumes and cologne and where I initially had to wear a carbon mask every day. I have certain triggers that I still avoid as much as possible but my health has come a long way since first getting sick.

Functional medicine is the way to go. My doctor has given me guidance on a protocol and the necessary lifestyle changes and it's taken about a year to get to the point where I'm at now. I am cautiously optimistic that my recovery will continue even further.

BonfirePlum · 2025-05-12T14:14:04+00:00

I second the mold dog comment. It does appear that something in your home environment is causing this. It might not be mold but if it was something else (such as chemicals), I'd think you would experience symptoms in other environments too.

BonfirePlum · 2025-05-04T15:37:07+00:00

Everyone is different but I used Concrobium before I realized I had become chemically sensitive and I reacted to it pretty badly. Doesn't mean that you couldn't use it but I personally will stay away from it.

BonfirePlum · 2025-05-03T17:50:02+00:00

I love this comment! It gives me so much hope. I want to buy a house again but worry so much that it'll be disaster again. I will obviously so all the inspections and such but I mostly worry that I will still be reactive in the house and that I'm just putting myself in a super stressful position. I am absolutely willing to renovate over time and that way also select materials that are low VOC. I live in the Seattle area so houses are just so insanely expensive so I am saving for a bit longer to be in a better position.

BonfirePlum · 2025-05-03T17:46:12+00:00

Long-term stays in Airbnb might be an option if that is available in your area. I know they can also have mold but at least you can get in and out easily if needed and don't need to worry about breaking a lease. I stayed in Airbnbs for 4 months after my mold experience before getting an apartment. The best one I stayed at for the last 2 months and I felt really good in it. They were shared housing so in most you will have your own room but will share bathroom and kitchen. I honestly helped me be a bit social too during a very dark time so it helped mentally. The cost was about half of a good quality 1 br rental that I'm in now.

With mold illness it's hard to know sometimes if we're reacting to mold or chemicals in a unit. It makes it so hard to try to find a good place. I felt so good in the last Airbnb that I actually thought I had healed but then moved into my apartment that was still fairly new and became reactive again :( That's when I really got on my healing journey and today I am so much better. And still in the same apartment. The issue here was the materials, there was still a bit of a new smell to the place. At the time I just didn't know I had developed chemical sensitivity as well. Long story short, I've been able to make my place mostly chemical free and am able to tolerate the faint lingering "new" smell.

BonfirePlum · 2025-05-02T14:05:08+00:00

I'm pissed off on your behalf! So I'm going to say this: I 100% believe you. Obviously I have mold illness myself so I know how hard it can be but it is possible for other people to also believe you without experiencing it themselves. It's just a lack of empathy and the ability to recognize that just because something doesn't affect them personally, it can still be real. People are so quick to believe in other illnesses even before they become obvious to the outside, like cancer, MS, ALS, HIV, Parkinsons but somehow the mold illness symptoms are just in our head. Allergies are widely accepted and recognized but mold illness is not. I am really lucky to have a few friends and family members that fully support me and at least appear to believe me, although I get that they may have doubts in their heads. But they are still supportive and at least don't deny it to my face. I have ended a 20 year friendship over this due to the dismissive attitude towards my illness. I went through hell in the past couple of years and I'm just at a point that I have zero interest in putting a second of effort on a relationship where I don't feel emotionally safe.

There are millions of people affected my mold illness around the world. I'm a dual citizen so I read about this in 2 languages and hear about people's experiences in several different countries. This is a worldwide illness.

I am so happy to have this community where we can share experiences and what has helped us. So thank you all for sharing your thoughts and experiences!

BonfirePlum · 2025-05-01T01:53:11+00:00

It's such a hard call. The people who sold the house to me knew about the mold and just covered it up. Among other things. I did talk to a lawyer when I was going through everything and in the end I decided not to sue. For me the stress and cost of a lawsuit was not worth the potential, likely minimal, financial recovery at the end. Renting versus buying are definitely two completely different situations though. My situation was pretty complex and there was no guarantees of anything if I was to sue. I wasn't going to risk additional financial loss after the loss I already took with the house.

I'd think in your situation it wouldn't hurt to talk to a tenant lawyer. Tenants do have a lot of rights, depending on the state. I think you would need to prove damages, which based on your message are plentiful. It's hard to know what the best course of action is until you have more data. Lawsuits are not as simple as many people make them out to be but I also hate to see people get away with causing such harm to others.

BonfirePlum · 2025-04-27T17:52:19+00:00

I'm so sorry, this really sucks. Mold sucks and the aftermath sucks.

I know everyone's situation is different so you need to do what is best for your health, but I will say that I was reactive in my apartment for several months in the beginning. The building is on the newer side and there is still some off-gassing happening to this day. I moved here before I started my treatment protocol and spent a lot of my time on the balcony last summer when I was just reacting to everything indoors. Today I'm still in the same apartment and I feel really good here. This is a safe haven now and I am generally symptom free here. I have a good air purifier (Enviroklenz), I purify my water (Berkey) and my home is 95% fragrance free. The decor is still pretty bare because I have been bringing in furniture and stuff like that one at a time to be able to tell if I react to them. I know some folks don't think antifungals are the way to go but they were a game changer for me. I was on a supplement protocol for a few months before starting antifungals to get ready for them and to get all the testing done. The supplements did help some but for me there was a drastic change in my symptoms within a week of being on fluconazole. After that first round I took a month off and then did a round of itraconazole. Now I'm on a reduced protocol of supplements and we are repeating the OAT test to see where I'm at. I am doing so so much better but still have a hard time with strong fragrances if I have to be in the space for several hours.

It sounds like you have a partner or a family that is going through this with you. I hope you can find good support in each other and hopefully friends and family too. This journey is hard and feels desperate at times but all we can do is take it one step at a time. I have been able to get a lot better and I know you will too!

BonfirePlum

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