Peripheral Neuropathy caused by MOLD
 

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. :Wave-Hello: 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.

whole body numbness/decreased sensation as well as inflammation flare ups ib body.
 

Hi! Thank you for sharing it I truly appreciate it! I am dealing with a loss of sensory sensation throughout my whole body. Numbness all over not one patch can i feel more than another. Ive been in hospitals. 100 doctors and so over 90 blood draws in 1 and half years. With no help. My brain mri did show a lesion but they are very confident its not ms and i had a spinal tap as well. So i have been told its all in my head etc etc. Ive lost the ability to cry as i have too much. Severe depression and hopelessness. My symptoms have also gotten worse with most medication and i have a hard time even tolerating binders and supplements. My urine mycotoxin test can back present for The Trichothecene toxin and Gliotoxin. My functional doc wants me to take cholestyramine to bind the toxins but i couldn't even handle bentonite clay my whole stomach got swollen and i had to get a ct scan just from that. Have you had any sympotoms of full body numbness or inflammation? For example my nose would swell up very bad for a week until my body can fix it. Even things such as gential inflammation as well as genetial numbness which has been constant for almost 2 years... Im in desperate need very worried if i can make it. Im not sure if its caused by the mycotoxins but im being told i need to get those out my body. Can you tell me what treatment you have done and how it has gone for you. Are you now able to feel your body again? -Thank you so much

Welcome Wholebodynumbness? :welcome_sign:

Welcome Claudbaker. :welcome_sign:

Welcome to MidwestWife, Claudbaker, and Wholebodynumbness?


Claudbaker, you'll probably be glad you got the French drain. The apartment building I live in installed one many years ago and it's still working well at removing the standing water that was a constant problem in the north area of the grounds.

I'd always be in favor of not moving just because moving is ALWAYS far more of a bother than a person expects, but I have had no experience with mold issues--though a neighbor's apartment was found to have mold, and she stayed right where she was while putting up with the considerable nuisance of having HEPA filters and other inconveniences for a while.

Hi Wholebodynumbness, ,I can empathize with everything you are saying and I am so sorry you are going through this!
I just saw your post but it is late here in the Midwest and I need to go to bed. I want to do justice to my reply to you so please give me until tomorrow and I will respond.

Dear Wholebodynumbness,

My heart goes out to you for your struggle; I know it myself too well. Yes, I know the whole body numb feeling, while at the same time retaining the sensations of pain and burning at different times. This has included the genital area as well as burning/numbness/altered sensation in my palms and tongue/mouth. I know the depression can be profound and have experienced it myself. Many “moldies” report depression so severe there is often a desire to die, even if there is no suicidal ideation or plan to carry out such an act. MRI’s of mold damaged brains can show up black and pitted, compared to a healthy brain image and this is not surprising since the toxins so easily cross the blood-brain barrier. The images of brain damaged areas that control emotions, cognition, and whole body functioning reflects the depression and catastrophic health damage that mold can cause.

Finding the underlying cause of your symptoms is a huge victory. And, yes, I have no doubt the presence of these mycotoxins is the cause. The trichothecene (Fusarium and Stachybotrys are sources of this – from water damaged buildings as well as grains like wheat, corn and oats) and gliotoxin (Aspergillus and Penicillium – very common- often from water damaged buildings) are neurotoxins and everything you shared fits.

Prior to diagnosis in May of 2019, I thought I was dying. We moved into a ranch home in 1999 that we now know had some penicillium and aspergillus mold in the crawl space due to standing water from faulty sump pumps. I experienced severe depression, gastrointestinal dysfunction, feet burning/numbness yet still with pain that advanced up my legs, then appeared in my palms and progressed up my arms, skin changes (tight, like a sunburn almost), brain fog to the point I thought I would lose my job, crushing fatigue, weakness, heart palpitations, maddening insomnia, dizziness, constantly feeling car sick, many food and chemical sensitivities and the list went on and on. My symptoms continually got worse and I was diagnosed in May of 2019.

In June of 2019 we had our home professionally remediated with the “gold standard”. However, my husband and I had just become too sick and hyper-sensitized. Many moldy people are unable to stay in the environment that made them as sick as we became, even when remediation is done correctly, as ours was. We decided to build a new home. It was a huge undertaking but we moved in in November 2021. We were in for a week, started feeling better, but had a setback due to a new but moldy item brought into the house. The item was quickly removed but I am still experiencing reactions to the residual toxins it left behind.

What has healed: many of my gi tract symptoms are gone. I do avoid gluten and dairy intake is minimal (the exceptions are raw cheese and milk from grass-fed cows). Please consider refraining from all grains if possible; they are loaded with mold. A fair number of chemical sensitivities have improved although in our house there are no scented body or household cleaning items. I highly recommend ditching all products with a fragrance. Your body cannot tolerate the chemical exposure. I can now tolerate the occasional, short-lived fragrance exposure (like in the grocery store or other). The constant state of feeling car sick is mostly gone. I rarely experience dizziness or heart palpitations anymore. Tinnitus has subsided. There is some improvement in energy levels. Depression has lessened and I never took any anti-depressants.

What I am still struggling with: neuropathy. It has improved somewhat as I can now walk about a half of a mile when, at my worst prior to diagnosis, I could only walk about 30 yards or so. Mouth and palms still burn but less so. It is said that nerves are the last things to heal – if they ever do. But I am grateful for the tiny improvements I am seeing, even if they are measured only in micrometers. I became unmasked to mold and can now smell it pretty much everywhere and now my mold exposures are often first manifested by nausea. My body is saying get out. I will probably always feel better outside. Inflammation of brain and body will probably be a long battle.

What has helped: I cannot overstate this – mold avoidance. You have to get out of it. Home, school, office, wherever your mold exposure is coming from, the body cannot heal while still in it. I do take supplements because the toxins have caused so much damage. Magnesium first and foremost. Glutathione and calcium d-glucarate, which help the liver detox. I get amino acid injections to reduce overall inflammation and calm the immune system. These have probably kept me functioning through this whole ordeal. That said though, you cannot “out supplement” your exposure. You must identify where your exposure is coming from and address it. There is nothing cheap, fast or easy about any of this. We lost a home we loved. We threw away probably 90% of our belongings due to contamination. We lost our health and have spent an enormous amount of money over the years on supplements, doctors, and tests that never truly helped. There is no treatment that compares to a less-moldy environment. I would love to say mold “free” but it really is everywhere. Please consider looking into the 2015 movie “Moldy” and/or looking up website paradigmchange.me (search Erik Johnson)

This is a hard journey but please remember there is always hope!

Cholestyramine treatment for mold exposure induced neuropathy
 

hi I appreciate the info! Do you remember what the main treatment was to get rid of the Mold? Im being told to take Cholestyramine to bind the toxins and see if my symptoms get better. Have you heard of this treatment option and what would you say was the x factor in your healing? Thank you

Hi, yes, I took cholestyramine. I’m not sure how much it helped because we were still in the moldy house. I should probably try it again. It is relatively inexpensive unless you have a pharmacy compound it for you, which eliminates the junk in it but makes it quite costly. The most helpful thing you can do is avoid the mold. Get out of it; the body cannot heal with ongoing exposure. If we had not left our moldy home I would probably be in a wheelchair by now, or dead.

Meant to add, correct remediation is crucial. A poor job is a disaster. Please go to website momsaware.org. Here you will find information with links for how to select a reputable remediation company.

can you please update?
 

May I ask how are you doing with your recovery, specifically your peripheral neuropathy, since you remediated your environment of mold and began detoxifying, etc? I am facing a similar situation with high levels of OTA just discovered in my body, and very painful peripheral neuropathy which developed last year. I am now seeing a very good naturopath who is helping me detox and support my immune system, but am terrified about my neuropathy in the long-term.

Welcome bryanhealth. :Wave-Hello:

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.

Hi Bryanhealth, I hope I correctly replied to your friend request(?). Technology is not my strong suit :)