Mike shared his story on the blog a while ago and now has an update — which I know a lot of people will find interesting to read.
Mike found Mold to be the root cause of his alopecia and has gone to great lengths to combat this in his home life. Here he explains how he’s getting on since his last post.Reece.
Mike’s invisible enemy part 2..
I’m sure some of you may be wondering what happened to me. I believe I left off in the early part of 2019 and was undecided about leaving my apartment after I had escaped my first mold infested home.
I truly believe this home triggered my alopecia and multiple other symptoms. I came to recognize the other symptoms as:
- a burning sensation mostly in my hands or sometimes other body parts
- a heavier heartbeat
- my breathing would feel more like it was on manual as opposed to auto
Following the symptoms
Once these symptoms would start, the hair would start to fall out. The previously mentioned symptoms would go away within minutes of leaving the moldy environment…..however the hair loss would persist until I was away from the environment for a few weeks. If I remember correctly around this time I had regained all the hair on my scalp but my beard was in bad shape once again and I believe my right eyebrow was starting to show signs.
Now at this point our landlord was not willing to properly remediate the situation. He even went as far as having his “expert” come in and tell us all is fine. Luckily for me, as I learned more about mold and how to test for it I bought my own particle counter from my mold detective. This device would eventually be my main tool on getting myself out of dangerous situations.
After I tested my apartment, it still came back with a 3000 count of penicillum/ aspergillius.
Moving away from the mold
I knew right away like before I had to abandon my home. Since I couldn’t go back to my parents house due to not feeling like that environment was mold free enough for me, and I also was unable to go back to the safe haven of my mother in laws house.
I began looking for another temporary shelter. My friend Frank offered his basement which had its own apartment. I went and brought my machine and tested out his basement and first floor. Although both floors came back safe, I was very hesitant on living in a basement and politely declined at the time.
After a couple days in a hotel, due to expenses I was getting ready to sleep in my car. I then received a call from Frank who seemed very scared due to a gentleman that he had invited over suddenly becoming violent with him. Even though he had managed to kick this man out, he was worried about him coming back. I then told Frank I’d be more than happy to stay with him and be his personal security guard, however he would have to let me sleep on the first floor. He happily agreed.
Frank’s couch was comfy and I immediately felt safe there. However my fiance didn’t want to join me and decided to stay in our apartment until we found another. She believes she’s not effected by the mold, at least not like me. This was a really tough time because we were due to be married in four months and we were no longer living together. I worried how things would work out and how long she would have the patience to put up with me and my condition. The one thing I had on my side was that this was no longer just alopecia but also a potentially serious health risk.
A new home
We began looking for new apartments and I brought my trusty particle counter with me. The place we settled on had good readings so we decided to sign a lease. After 8 weeks at Frank’s house my beard was still sparse but had finally connected again after a year. I had also started working out again going back to the days I stayed at my mother in law’s house and regained much of my form. Staying with Frank was a great experience. He always had food, made espresso and was very supportive of my situation. He would even leave on weekend trips and I would have an entire brownstone to myself in the good section of the city we lived in. The only downside was when he had a “guest” over, I’d have to leave for a few hours at night.
On April 1st we moved into a newer apartment a few blocks from my parents. My father was not doing well at the time so it was good that we were close. At times I felt safe in this apartment and at other times the “mold symptoms ” would appear. I would test the air several times and still get acceptable results. I started noticing bald spots in my beard and I would distance myself from the apartment. It was easy to do since my fiance worked different hours from me. I noticed that spending only 8-10 hours in the house a day combined with steroid shots seemed to grow my hair back. I entered June of that year with very minimal loss of hair on my beard. I was able to grow it out for several days at a time and only I was able to notice where the missing hair was.
On June 8th we got married. It was an incredible day for me because only a few months prior, I didn’t know if I would even make it to that day. As depressed as I was and my declining physical appearance and condition, I did not think this wonderful woman would see this journey through with me. However since seemingly getting away from the mold back in September of 2018, my self esteem and appearance were almost back to how I was before any of this started.
Throughout July, August and September were seemingly normal with a couple exceptions. I was having horrible stomach problems which I eventually had to get a colonoscopy for. After believing for weeks I had stomach or colon cancer turned out to luckily only be ulcers. Of course leading up to it I was blaming mold. My father passed away in August of that year. It was sad but I was happy I was in a better place to manage that loss than I was a year prior.
Now as I said before I was still getting small spots on my beard that would go away with distance and treatment however the end of October that year the spot that I deem the spot that won’t go away “TSTWGA” appeared right in the center of my front hair line.
Looking back I believe that once we started using the heat in our apartment, we made whatever was hiding worse. My other symptoms also increased. I took several mold tests. It took a while but eventually a test turned up bad and an inspector discovered mold under our bedroom floor. This was three months after discovering TSTWGA and also started losing more hair on my beard.
Buying a new home
At this point I was fed up. I decided it was actually a mistake to sell my house the first time since I had control. We decided to buy again with the intention of taking down any wall that needed to be taken down. In the mean time I slept in hotels and my car. After a month of that my beard hair returned but not the spot in the middle of my forehead.
Of course our new house, which we bought in May of 2020 passed all inspections….except the inspection my body tells me since I started getting symptoms ten fold since moving in. The spot on my forehead now had a friend and my beard looked like a Dalmatian. It took a while to find the mold but once again I did and left the house the end of September. It turns out the particle counter will not always pick up what may be hiding behind a wall or floor.
I will not be moving this time and will do whatever construction and remediation I need to do…. Unfortunately this even includes the roof and siding. Having two layers of roof and aluminium siding over wood shingles is a VERY BAD IDEA.
Toxins from mold spores
I started doing more research and found out that hyper sensitive people like myself are not reacting from mold spores alone but from the toxins that mold emits. The toxins which are referred to as mycotoxins are much smaller than the spores and are not picked up by hepa filters. They will remain long after traditional mold remediation is completed.
I’m still getting work done to the house. I sleep in my car during the week and a hotel on the weekends. I’m having a mold remediation company come in that is supposed to specialize in helping hyper sensitive people and removing the toxins that “traditional ” remediation companies ignore.
Throughout my journey I’ve found doctors to be completely useless. Mold hypersensitivity is not recognized in the majority of the medical community. Hair loss will still be blamed on stress usually which has become quite the trigger word around me. From what I gather many people like myself who have alopecia or other auto immune diseases are ignored or led to one dead end after the next.
Finding a doctor
I am happy to say though that I found a doctor that has treated people like me. I have an upcoming telemedicine appointment with Dr. Michael Gray in Arizona. I encourage you to check him out on YouTube because he has been trying to get the rest of the medical community to recognize and treat people like myself.
One good thing that has come of this is that I was able to help someone just like me. Jeremy lost all his scalp hair eyebrows and beard. He hadn’t had any regrowth in two years. His daughter also had developed eczema. I brought my particle counter to his apartment and tested every room. Needless to say his house was full of high levels of penicillum/aspergillius.
Within a year of moving to new construction, I’m happy to say he has:
- regrown his beard and eyebrows
- his daughter no longer has outbreaks of eczema
- he has regrown some scalp hair but not enough to do anything with yet
Facebook support groups
I had joined a alopecia areata group on Facebook and made several attempts to share with them the information I had discovered. I was mostly dismissed. These people seemed more into yoga and going gluten free…. AND THEY WERE ALL STILL BALD!!! I believe I was thrown out after I told them they would never get anywhere constantly blaming stress and ice cream.
As I sit here in my car after once again being out of the moldy environment for a little more than a month my beard looks good and even TSTWGA is finally starting to fill in. I am more optimistic than I was before about finally bringing this story to an end.
To be continued…..
If you would like to contact Mike about anything he has discussed or reach out and ask any questions – you can get in touch with him to ask.