Those who have experienced ill health due to toxic mold exposure often feel isolated, and even crazy. I’m writing this post to assure you that you are not alone, that many are struggling.
When our family of 11 connected the dots in 2008 (read our story here), I was assured by then leading toxicologist Dr. Jack Thrasher that we were not the only ones. “I’d like to retire,” said Dr.Thrasher, “but too many people are suffering.” (Dr. Thrasher has since passed away, but I recount his statement in this interview recorded eight months before his death.)
Despite Dr. Thrasher’s assurances, I felt utterly desolate and distraught. No one seemed to understand. Relationships were strained.
I began blogging about our experience in 2009. I founded momsAWARE soon after, and within months I realized that Dr. Thrasher was right. Since 2009 I have received hundreds of emails, and the themes are the same:
- isolation
- desperation
- panic
- devastation
Here are excerpts of emails I received in a three-week period in 2018. I’m sharing these to validate your experience and hopefully lessen your feelings of isolation.
Excerpts of Emails Received in the Spring of 2018
For the 3 years living in the home, my kids were constantly sick with upper respiratory infections, ear infections, strep throat, pneumonia, etc. I had my kids in the hospital every month and still did not put 2 and 2 together. The house looked nice from the outside of the walls but behind them was hidden mold.
I went to the doctors and they kept telling me that it was my asthma, that kept flaring up. At that time I went along with it.
I became very tired, trouble breathing and overall weak. I would cry—my body was soooooo tired and I could not explain it. I had that cough for a year when I started having numbness and tingling in my arm where it felt like I had little circulation.
Leaving everything behind was tough enough and now I can’t seem to find a doctor to help me. The dizziness and weak legs is causing me to become discouraged and depressed.
Have you heard of these symptoms before? Could you direct me to any resources? Should I be throwing all our belongings away? We lived in this apartment for one month.
I am sick all the time. I have been to all kinds of specialists, so many different tests and even repeats. No one can ever find what the problem is. They assume it may be fibromyalgia. I keep telling them I feel toxic.
I feel alone and lost. I have lost my job and business and feel like a burden to my family. My health affects so many people.
I worked at a business for a year and a half and was so sick and could not figure out what was wrong with me. My symptoms were so bad I just recently left there a little over a month ago. I cried when I read your story.
It seems that the toxins keep following us around despite stringent efforts to try and not cross contaminate. It’s literally driving us insane.
Here are some recent subject lines of emails received:
- Sickness wont go after living in mold
- PLease help
- Pls how do i make contact w/you , so dizzy and confused pins and needles all over my face, lots of pain here
These two statements are more common than I can say:
- I’m not sure why I’m writing to you, except to find hope.
- I feel like it’s one step forward, 20 steps back.
Sadly, environmental illness is not on the radar of most physicians. The world at large has yet to embrace the reality that poor building and maintenance practices often lead to serious health issues.
Thankfully, the tide is turning. Awareness is growing. A group of physicians has come together to form the International Society for Environmentally Acquired Illness (ISEAI).
While the road can be long and the journey isolating, there is hope. Sometimes hope is found in knowing we’re not alone.
I share more about finding a new normal in the post How I Got My Life Back After Our Toxic Mold Exposure.
Thanks for writing this Andrea. We are still not a 100 percent back. It is so devastating and no one understands. Unless you have been through it.
Amazing what those four words can do for those of us who have been through this. For some, more than once.
I can’t thank you enough for everything you do to bring awareness and support to others.
For two years I went to doctor after doctor. Mostly I was made to feel that what I was experiencing was all in my head. My family also though it was psychological. Conventional lab tests showed nothing wrong. Finally I saw a physician that specialized in toxic mold. She ran some tests and the tests came back positive for tricothecenes. With genetic testing, I found out that I have a genetic defect where my body is unable to rid itself of toxins. I have lost most of my possessions and am renting in other people’s homes. That too has been problematic as I am so sensitive that I easily get sick again when the homes I reside in are contaminated. I have been through Dr. Shoemakers treatment plan and have gotten well only to be re-infected again. I am going through his treatment now and hope that this time I can stay well. It has been 7 years.
So thank you Andrea for shining the light on this devastating disease. More doctors need to be educated so that people like you, me and thousands of others can get the health care they need and deserve. The need is immense.
This disease can destroy people’s lives and that of their families.
Thank you for sharing your story, Pat. You’re right – the need is immense.
Hi Andrea, I just read your story @ wholenewmom.com. Thank you so much for sharing your journey. I’m trying to get to the bottom of my health/digesive issues & suspect that mold exposure could be the issue. I’m in AZ (east valley) – do you have any doctors or resources that you could recommend?
I don’t have any specific recommendations, but you’re welcome to email me andrea@it-takes-time.com
Hi Andrea, thank you for sharing your story. My husband and I sold our home very fast in dec. 2017, we moved into an apartment. I have been extremely ill since moving in. Numerous doctor visits, and a three day hospital stay. Constant cold and flu symptoms, itching, dizziness, depression. The only time I feel ok is when I’m away from the apartment. It’s been a living nightmare. I didn’t think it was apartment related until after there was a flood from outside and seeing how the cleanup was handled. I asked the Apartment manager to have air quality testing done and reluctantly she agreed. I was told we’d have the results in two to three days. It’s been two weeks since testing, and they will not share the results with me. I’m sure they are very bad, because of my illnesses. I was told a mold remediator would be reading the results and she’ll let me know what happens, and what steps need to be taken. Was that her way of telling me, Yes you have mold? I’m telling my doctors I am sick from mold in my apartment, and they give me a bill and meds for symptoms. I asked about blood testing to determine exposure, I was told there aren’t any. So now I have to get air quality testing done myself, which is very expensive. I need mold knowledgeable doctors, and attorneys in Memphis TN or surrounding areas or anywhere to help. I’m suffering, sick and uncertain about the future. I feel it will be necessary to leave all of our belongings, this truly hurts. I really need help.
This sounds like a serious exposure. I’m sorry to hear all of this. Unfortunately, there are no standards in this country so it makes “proving” this very difficult. Trust your gut as you navigate this road. This post may help:
http://it-takes-time.com/2016/01/29/toxic-mold-and-the-law/
Saundra, we highly recommend Dr Potter in Franklin, TN with sanctuary Functional medicine. He uses Dr Shoemaker’s protocol. It’s about 3.5hrs from Memphis (we also live in Memphis).
Leviticus 13:47-59 New International Version (NIV)
Regulations About Defiling Molds
47 “As for any fabric that is spoiled with a defiling mold—any woolen or linen clothing, 48 any woven or knitted material of linen or wool, any leather or anything made of leather— 49 if the affected area in the fabric, the leather, the woven or knitted material, or any leather article, is greenish or reddish, it is a defiling mold and must be shown to the priest. 50 The priest is to examine the affected area and isolate the article for seven days. 51 On the seventh day he is to examine it, and if the mold has spread in the fabric, the woven or knitted material, or the leather, whatever its use, it is a persistent defiling mold; the article is unclean. 52 He must burn the fabric, the woven or knitted material of wool or linen, or any leather article that has been spoiled; because the defiling mold is persistent, the article must be burned.
53 “But if, when the priest examines it, the mold has not spread in the fabric, the woven or knitted material, or the leather article, 54 he shall order that the spoiled article be washed. Then he is to isolate it for another seven days. 55 After the article has been washed, the priest is to examine it again, and if the mold has not changed its appearance, even though it has not spread, it is unclean. Burn it, no matter which side of the fabric has been spoiled. 56 If, when the priest examines it, the mold has faded after the article has been washed, he is to tear the spoiled part out of the fabric, the leather, or the woven or knitted material. 57 But if it reappears in the fabric, in the woven or knitted material, or in the leather article, it is a spreading mold; whatever has the mold must be burned. 58 Any fabric, woven or knitted material, or any leather article that has been washed and is rid of the mold, must be washed again. Then it will be clean.” This was a part of your blog awhile back & I found it insightful about God realizing the dangers of mold (decay in the world).
Hi Andrea, my family of 7 is currently plotting our move into the camper and leaving our home. You have been such a godsend!
So for the last couple of months, I have been buying new clothing and storing it in plastic bags in our “moldy” home, for when we move out. I haven’t washed it, and most of it has stayed new in the bags, aside from the ones I needed the kids to try on.
Now I’m having moments of worry that the mycotoxins could penetrate the bags, and they could be unsafe for us to take with us.
I’ve been keeping the bags under the staircase, right above our crawl space opening (which was moldy prior to remediation) and we never replaced the carpet in that closet.
I would love to hear your opinion on this. I have spent so much money on them trying to prepare for our escape, and we are losing so much already (I know you are familiar with all this) but don’t want to endanger my kids by cross contamination.
Please share with me what you think of this?
Thank you so much!
This is a tough one. I see why you’re concerned. My best thought is to wait a bit before dispensing the clothes. Once you make your clean break and you’re established I know I would try it. The good news is I think you’ll know right away. Once you’ve made a clean break it’s amazing how your body lets you know when you’re around the old toxicity.
Kathryn, I am in similar situation. I stocked up on new clothing and kept them in plastic garbage bags, or their plastic mailing bags. But kept them within the moldy home (from cross-contamination). When I learned it could be a problem, I quickly put most of them outdoors on the terrace. I have not tested them out yet, as I’m still dealing with the moldy air here. I’m curious how it turned out for you?