Welcome MidwestWife. Others may be able to help.

Kitt

Thank you for the welcome. I hope my post wasn’t so long that people turn away.

Very, very interesting story - thank you for sharing! I've been living in a leaky apartment building for a couple years (and recently found black mold in the air conditioner in my bedroom), so I have lately been rather suspicious of mold as a possible cause of my own neuropathy. You've inspired me to reach out to a local functional medicine doctor to explore this.

Best wishes for a speedy recovery. Please keep us updated!

Hello beifeng!
Thank you for letting me know that my story may have helped you in some way. The mold you have discovered in your bedroom could very easily be the cause of your neuropathy. There was a small amount of mold in our bedroom too (in addition to our crawlspace). Your scenario of a leaky pipe, with exposure for that long, matches countless other stories by mold victims who developed neuropathy from the mycotoxins.

If you find a physician that only acknowledges mold allergies (respiratory symptoms), but is not open to the idea of mold toxicity, then I would strongly advise you to keep looking for a doctor that is mold literate. In the meantime, please consider getting away from the mold any way you can. I know these things are easier said than done but move out, sleep in another room, have air conditioner replaced, sleep with window open, etc. Anyone suffering from toxic mold poisoning must get clear from the mold somehow, because the body cannot heal as long as there is ongoing exposure.

I will soon provide an update for my own health (thank you for asking) as we are now 14 months after professional remediation of our home, but I wanted to respond to your post as it really jumped out at me!

Hi there. I just read your post and feel so overwhelmed. I got sick 2.5 months ago. We moved into our house in May 2021. The house is 110 years old. We knew it got water in the basement but didn't take care of it because the basement was unfinished and we figured we would only use it for storage. During the summer our belongings down there must have gotten moldy.. coats, snow boots etc. We didn't know it until a few weeks ago when we put in French drains and began cleaning out. I have never been so sick in my life and feel that the mycotoxins must have permeated the rest of the house. I have unbearable chest pain, stomach pain, insomnia, brain fog, aches in my neck and spine, and trembling and low grade fever of 99-99.3. My bloodwork has confirmed toxicity but I'm having an appointment with a dr who is CIRS trained today. In the meantime I don't know whether it's even worth trying to remediate this house or just try and leave. We have 8 children and can't just pick up and go!

How successful have other people been at remediating versus moving? Where did you move to once you got your mold diagnosis?

Hello! My apologies for a delayed reply. I’ve had much trouble with password recovery (and mold recovery efforts). I hope you are still out there. Please give me until this evening to fully reply to your post; I just wanted to quickly touch base.

I am so very sorry this is happening to you and your family. I would say you are correct that the toxins have spread throughout the house, most likely via the hvac system. This was probably magnified after basement items were disturbed during the cleanout. That you had French drains installed clearly indicates you have had a water issue. Your symptoms are classic for victims of mycotoxin illness. I am glad you found a doctor that is literate in CIRS.

One thing I should have made clear in my original post was that not everyone in the household has to show signs of illness for mold to be the problem. Not everyone will necessarily get sick. We are all made so very differently with varying degrees of constitutional vigor.

I found the following websites quite helpful as we began our mold recovery journey (we are still on it). paradigmchange.me This website is probably the most comprehensive site that I know of that addresses mold recovery, incl’g advice on what to keep and what to throw away. It also offers links for additional research. Most notably, found within the site is the story of Erik Johnson, who went from a state of complete, mold-induced physical debilitation to literally hiking in the mountains. He credits his recovery to mold avoidance.

Also, please consider visiting moms AWARE - Living Healthy in a Toxic World. This site was developed by a lady (Andrea Fabry) whose entire family (her and her husband, 9 children and pets) suffered devastating health consequences due to mold in what they thought was their “dream home” in Colorado Springs. Her husband, Chris Fabry, can be heard on national radio station Moody Radio. (Last I knew his program offered a segment called Toxic Tuesday – discussing things all environmentally toxic). They moved from that home to Arizona.

Also, consider looking up Dr Ritchie Shoemaker, a pioneering physician in the field of environmental and mold related illnesses.

Re success of remediation (even professionally performed), this is dependent on multiple factors including severity of illness for the affected person, how long they have been symptomatic, the degree of contamination and for how long the mold has been in the environment. Social and economic factors add additional layers of complexity to the picture.

Many people who have become quite ill from mycotoxins have tried remediation and failed. After throwing away good money after bad, they are the first ones to say cut your losses and just get out. It could be, however, that there really are many people who successfully remediate and stay in their home, move on with their lives, and therefore are not heard from on various social media platforms (such as this forum). Forums, various websites, and FB pages do seem to represent those who are struggling the most.

For my husband and I, we had our home professionally remediated in 2019. At that point I unmasked to the smell of mold. I cannot escape it. It is ubiquitous in the environment, both inside buildings and outside in the ambient air. I can smell mold in probably 90% of the homes and buildings I enter, on brand new items in a store and even on the mail. I can smell it on my own skin (and my husband’s) as our bodies try to detox.

After remediation, many symptoms improved for both of us (yeeay!), but some did not ☹. With the home on a crawl space, we knew that the potential for future water intrusion remained and there were other things about the house that were not conducive to our recovery. That said, we decided to build a new house on a slab. We designed the house with features to help mitigate any future water problems. (Example, we have no penetrations in the roof as boots around vent pipes will be among the first places to have a leak. We have only a ridge vent.)

There is not an easy answer or one that fits everybody. I hope I have not failed you with my reply. Please keep me posted on how you are doing.