Many of the peripheral neuropathy stories on this forum sound much like my own so I wanted to share my experience in hopes that it might help someone. This is my first post. My symptoms all these years have been due to poisoning by a neurotoxin, specifically the mycotoxins produced by toxic MOLD. My exposure was from water in the crawl space of our home. This was not a "black mold" but was instead just a white, light dusting of an Aspergillus species and Penicillum on the floor joists.

I am in my early 50"s, never smoked or drank and always tried to stay active. My symptoms started out at least 10-15 years ago with fatigue and the following problems showed up along the way. All continued to worsen over time.
Numbness and burning in the soles of my feet that started advancing up both legs then
burning in palms of both hands with numbness and weakness advancing up both arms in a stocking -glove pattern.
Skin changes in my lower legs, they always felt sun-burned and "tight" .
Crushing physical fatigue, at times feeling even sedated.
Poor recovery after physical exertion.
Unexplained joint and muscle pain.
Restless leg feelings at night with charley horses in my feet and calves plus occasional, random twitchiness.
Entire body feeling as though it "buzzing" at night as I laid in bed.
Tremors. (To DavidHC, thank you for your posts on CBD oil. It was the last ditch effort to get some symptom relief right before my mold diagnosis. It has done wonders for my tremors. )
Flushes of weakness to where I thought I would collapse.
Many cognitive deficits including lack of concentration, poor problem solving and word finding, mental fatigue, memory problems.
Burning mouth and tongue.
Nausea and vomiting. Diarrhea (ER visits to replace fluids)
Vertigo and also non vertiginous dizziness, a constant state of feeling "car-sick", heart palpitations including significant episodes of tachycardia (trips to the ER).
Inability to tolerate chemical smells.
Insomnia. Chronic. Severe. Maddening.
Headaches ("Ice Pick")
Light and sound sensitivity. Blurry vision.
Prolonged healing time for injuries or no healing at all.
Environmental and food allergies (peanuts and grains are notoriously loaded with mold).
Deep depression.
Easily startled at unexpected noises.

Diagnostic work-up over the years was always neg: blood work, ekg's, cardiac ultrasounds, mri's, etc. No diabetes, no MS. I also came to the personal decision that I would not submit to any testing (taps, EMG's, muscle biopsies, etc) that would not change my outcome because afterwards the doctors still wouldn't know what to do for me. I found an integrative physician who diagnosed me with Leaky Gut as well as Multiple Chemical Sensitivities (MCS) and Chronic Fatigue Syndrome. While those diagnoses felt somewhat like a victory I was still asking "why?" for those conditions. Years of taking costly supplements, safe removal of mercury fillings, removal of every tasty food from my diet along with replacing home and healthcare products that were reduced chemical and fragrance free only seemed to make a minimal difference at best, but in fact, I just kept getting worse. Even my integrative doc started thinking I was presenting with psychosomatic issues.

My husband then started having some of the same symptoms. Subtle at first, but I would say "that sounds like me". At my integrative MD appointment in May 2019 I was adamant that there was something wrong with me and it was getting missed. (Doctors not knowing what's wrong does not automatically mean I'm crazy.) He finally said this is mold poisoning from mycotoxins. He was right. Subsequent urine testing ("MycoTOX Profile" from Great Plains Lab) showed I was loaded with a toxin called Ochratoxin A (from Aspergillus as well as toxins from penicillum). Mold toxins destroy every body system, and it explains my leaky gut/SIBO, MCS, cardiac symptoms, neuropathy (my central, peripheral and autonomic nervous systems all damaged) and about 99% of everything else that's been wrong. . In addition to the mold toxins, I had high levels of petrochemicals in my system; these are also neurotoxins that can produce the same symptoms. (Exposure from gas engine machinery in our attached garage, perhaps?) A liver study showed that my methylation process was not working so my body could not clear the mold and therefore I could not handle everyday exposures to foods, perfume, cleaners, gasoline, paint, etc.

More people do not know about mold toxicity is because widespread admission that it could cause this much devastation to a person's health would be financially catastrophic. Doctors are completely ignorant and Big Pharma, if aware, probably thinks the financial waters are murky at best until there is a general acceptance of a health issue. The real estate and insurance industries, the building trades and especially the gov't all have a vested interest to deny the problem. Acknowledgement means being liable for occupants and therefore these groups would go bankrupt due to the astronomical cost. Even new homes and buildings are not a guarantee that one can be free from a moldy environment. Look at any construction site and what do you see? You see partially built buildings standing out in the rain. Builders do not wait for these structures to dry out. No, time is money so they seal them up nice and tight and move on, leaving the perfect conditions for mold. You do not have to be able to see or smell it; it can still be behind the walls.

Many internet searches for ill-effects of mold will often result in just respiratory problems (even the Mayo Clinic - and everybody believes them, right? - reports up to 93% of all sinusitis problems are due to mold). This is not a mold "allergy". This is poisoning by mycotoxins, very powerful neurotoxins that can overwhelm and destroy the body. The few physician encounters I have had since the mold discovery have been met with blank stares. I am extremely grateful that my integrative MD finally recognized my symptoms and accurately diagnosed me. I do believe the Lord used this doctor as an instrument of His grace. How many people never get an answer?

I obviously do not know if mold toxicity is the cause for other sufferers on this forum, I just know lots of stories here sound almost identical to mine. I can post very helpful links after meeting forum requirements for new users.
Getting free from mold is an arduous trial and expensive process in and of itself, but thankfully, after 10+ years of trying to get to the root cause of my frightening health problems, we were blessed with the answer. May the Lord be with you in your journey. There is hope.

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?

Hi,
Thank you very much!!
When I was little and growing up my family lived in a series of bad/moldy homes.
I'm 19 now and have most of the problems you stated above, I never thought mold could be the cause of my neuropathy!
My mom has had severe health problems because of the black mold we were exposed to, so I always tried to downplay my issues, but it's really scary!!
I was wondering how you were doing? And if you have found anyway to relieve the pain?
Thank you again I'll be praying for you!!

P.S
I agree, you would not believe how many homeowners/management companies have done anything to keep us quiet when it comes to mold!!

Hi Allie333!
Thank you for your input. I only visit this site every few months or so because I'm not sure that I really have much else to offer. I just want to shout from the rooftops to all those who are suffering the same symptoms as me, "this sounds like mold!"

An update for me: moving has helped but not all problems are gone. Most notably, my neuropathy has improved to the point where I have been able to actually go for a walk. Last month my husband and I went to a state park and we walked for almost 4 miles. I have not been able to do that in probably 15 years or more. Not too long ago I could barely walk 100 feet to get to my mailbox. That said, some symptoms have progressed, such as the tremors in my left arm. When brain fog becomes more noticeable I can tell I am in a moldy environment. There are buildings in my community that I now refuse to enter, such as certain stores and restaurants because they are quite moldy. It just is not worth the symptoms. Homes of certain friends are problematic as well.

I still take multiple supplements and I get major autohemotherapy (blood removed, mixed with ozone and infused back in) which has helped the most, but nothing, and I do mean nothing, heals like getting out of mold. Once sick from it (with neuropathy and all the other symptoms it causes) a person will not get better until they are out of it. One day we may have to consider leaving the Midwest for a drier climate (although that is not a guarantee for healing) but for now I do not feel the Lord placing that on my heart.