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!