My Invisible Enemy: Mike’s alopecia story

As I explained a few posts ago. I want to share other’s stories with you. This one comes from Mike, from the USA, who wanted to share his alopecia journey and how he found his trigger. I’m sure you will enjoy reading it as much as I did. Over to Mike.

The beginning

Life was finally going the way that I wanted it to go. After many years of dating and casual relationships, I got engaged to the love of my life on February 17th, 2018.
In late March, we closed on our first house.  I can easily remember my last weekend as a “normal” person. On Friday April 13th, we saw Billy Joel at Madison Square Garden. That Saturday, we walked for miles in order to explore our new town and had brunch at a nice outdoor cafe. We then went out for dinner later that night at a Peruvian restaurant before we picked up drinks and cigars. We then went back to our home and listened to music in our living room before retiring for the night.  That Sunday, we ran around a track in town before spending the rest of our quiet Sunday in our new home.
I always take a week vacation in April and I was looking forward to getting a lot done that week while my fiancee was working. That Monday, like any other Monday, I was shaving with my electric trimmer and thought I nicked myself. There was a small bald spot by the right side of my mouth/goatee area. I thought nothing of it until Tuesday night. Looking in the mirror, it was like the spot had grown bigger and there was a second spot forming around the right side of the jaw line. This was less than three weeks after moving in to the home.
I had heard of alopecia, but I didn’t know it wasn’t curable and I didn’t know that treatments were hit or miss. Everything that I read that night on the internet scared the crap out of me and my many months of constant mirror checking started that night. I felt a little better when I was able to book an appointment with the dermatologist that Thursday. In my head I was saved. I was going to go to the doctor and I was going to get the help I needed. Soon, this would all be a distant memory. I could not have been more wrong.
The dermatologist I went to see was really a Nurse practitioner. But she initially  seemed like she knew her stuff. Of course she wanted to blame stress for my hair loss, gave me steroid injections in my face and told me to come back in a month. She was pretty direct and explained to me the disease could travel to my scalp and eyebrows. I asked several other questions which she couldn’t answer. For whatever condition I went to the doctor for,  this was the first time I couldn’t get any answers.

Stress and anxiety

I began to think about how stress may have played a role in this and it made sense.  I had recently switched schedules, so I wasn’t sleeping anywhere near as much as I used to.  I was dealing with a lot of annoying micro managing at work which was pissing me off nearly every day for the past few months.  My father had several medical issues and needed a lot of care. However, no matter what stresses I may have had prior, once the hair started falling out, the real anxiety began.
It was absolutely consuming me.  I was scared all the time. I gave up Protein shakes because I thought that was contributing to my illness. I also stopped drinking alcohol and gave up sweets. I was gobbling down anything considered anti inflammatory. I was miserable. My personality was drastically changing. I became very withdrawn.  I felt like I could no longer enjoy things in life which I had previously enjoyed my previous 32 years.

Further symptoms

I tried to maintain a routine and continued to work out. A week after my first dermatologist appointment, I started to calm down a little until one day after working out in the basement, where I had set up my home gym, my entire scalp broke out in rashes. I had also been getting other strange symptoms like twitches and burning sensations throughout my body. I broke down and cried for the first time. I had no idea what was happening to me. I went to an urgent care center that night only for them to tell me to follow-up with my dermatologist.
The next day,  I took off from work and visited my dermatologist again. She pulled on the hair around my rashes and the hair stayed where it should.  She gave me a prescription for a topical steroid but instructed me not to put it on where I had previously been injected.  I then went to my Primary doctor and got a blood test in hope they would find something wrong with me which would be treatable. I cried at each appointment and of course my blood work came back fine. I was also advised from my primary care provider that I must be stressed and because of this I was told to give up caffeine and offered a prescription for Xanax which I refused.
I couldn’t believe this was happening to me. It felt like a nightmare that I couldn’t wake up from. I tried giving up coffee which made me even more miserable.  Life as I knew it up until that point was over. After a month,
I went back to my dermatologist for my 2nd round of steroid shots. I felt a little better that day since I was told I had white hair growing in my bald spots. I then went back home and tried to continue my positive attitude. I tried using my basement gym again,  I went upstairs a couple of hours later to shave and to my horror noticed a brand knew bald spot on the left side of my chin. My positive attitude lasted a whole 2 hours.

Part 2: Downward spiral and depression

From this point, it was a downward spiral. After countless hours researching web md I convinced myself that I had sleep apnea. This theory was supported one night when I constantly woke up from hypnotic jerks. That night and morning were torturous. Every time I would wake up with a hypnotic jerk, I felt like I was making my alopecia worse and would get stressed on top of it.
By June, I was the walking dead. Alopecia had completely overtaken my personality. At work, people knew I was acting different and something was wrong. They all told me not to stress and that my slowly disappearing beard wasn’t even noticeable.  By this point I had no use for my electric razor and had to clean shave every morning. I talked to several other people that have had bouts of alopecia, but everyone seemed to get relief after a couple of appointments with the dermatologist.
At this point I had lost weight and muscle tone which really depressed me.  My relationship was suffering, because I was depressed all the time. I wasn’t enjoying the things I used to enjoy. I no longer felt attractive to which I was constantly told I was vain. I started seeing an actual dermatologist by now and he gave me steroid shots and cream to put on twice a day. Unlike the nurse practitioner he insisted I put the cream on the injected spots. Of course he told me to try to lower my stress levels. After all, alopecia is brought on by stress right?

My nemesis…

After many dead ends, and more doctors visits I finally found something which gave me a glimmer of hope and became my new nemesis. I discovered mold in my basement ! Lots of it. I had been working out in the basement and breathing all the mold spores in directly. I had researched mold quite heavily after this and read how mold can make people lose hair through histamine or inflammation. One common word that would always come up while researching alopecia was inflammation. There didn’t seem to be any article directly linking alopecia to mold but I did come across many hypothesis about mold possibly triggering an auto immune reaction in some people if they’re genetically predisposed to it.
I immediately scheduled a mold inspection at my home. After several days the results of my inspection came back and remediation was scheduled. The air quality test informed me that the counts of penicillum aspergillus mold in my basement was 2,500. On the 1st floor it was 1,100 and on the top floor was 850. I was told by the inspector that mold count indoors should normally be less than outdoors. Although there is no set standard on the indoor levels, he did explain that the counts start to get problematic if they’re over 1000. However every person is different on how they will react. Mold spores are microscopic and cannot be seen by the naked eye. When I asked about my hair loss, he replied that it was probably stress.
I was convinced mold inhalation was the source of all my problems and finally felt like this nightmare was starting to end. I started seeing a few thin white hairs where the spots on my beard had disappeared. In July my fiancee and I took a trip to Lake George. When we arrived home, I noticed the first bald spot on the top right portion of my head. I was officially depressed again. I  hated my house and felt like there was no where I could go without risking other aspects of my life. I blamed the house for everything and constantly wished that I never moved out of my previous apartment.
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The rest of July, August and the first half of September were low points in my life. Most of the frontal portion of my beard was gone. I was still able to comb over the bald spot on the top of my head and found out I was very artistic with Toppik, a hair fiber filler. I also had about 6 spots on my neck and beard which were coming together. I was still going for steroid injections every 3 weeks and rubbing steroid creams on my face. I wasn’t going down without a fight. I was predicting that I would be shaving my head by November. I kept asking my fiance to assure me she would still love me. It seemed like a silly question but my confidence was completely gone by this point.
 I tried to get a prescription for xeljanz , a promising new medication not yet FDA approved for alopecia, but my primary doctor refused and started yelling at me that I was doing a horrible job managing my stress and that stress was why I had alopecia. My response to him was asking him if he told his blind patient that he pleasures himself too much. I would  mention to my doctors and family members that I believed mold exposure was causing this and that I also felt like there was still something in the house I was having a reaction to. I was largely brushed off and was given many suggestions to see a professional psychologist or to give in and take Xanax….Once again I refused.

Part 3 : Escape and Vindication

In early September 2018, I had spoken to my original home inspector who felt really bad that he had missed the mold the first time. I told him I still felt that there was something in the home that I was having a reaction to. He agreed to check out my house…this time for free. Upon his arrival he discovered a shit load of mold in the crawl space area which most likely was forming while the other mold behind the sheet rock was being re mediated. Within a half hour I was packed and out the door. We made arrangements to stay at my fiance’s mom’s house in Jersey City until we figured out the situation. I remember the first day of entering my future mother in laws house. I sat down on her couch and exhaled. I didn’t know what the future held but I knew at least at this point I had a chance of getting better. After a second inspection and remediation of my house, the penicillum/aspergillus mold count were as follows:
  • 94,000 in the basement
  • 55,000 on the 1st floor
  • 5,800 in the bedroom.
We made the decision to sell the house and start to look for an apartment. Within two weeks I noticed a lot of thin white hair in my beard. The hair continued to grow but at a slow pace. After 2 months I was able to cut off my comb over. In a long and exhausting war, this was the first major victory for me. All the hair on my scalp had returned and my beard was still progressing to the point where I was able to go a day or two without shaving. Everything was looking great until we left my mother in law’s house.

Part 4: The return and current situation

To make a long story short, I started getting some of the same symptoms in my new apartment that I was getting in my house. They were not to the same degree as before and I initially just thought I was making myself crazy. After a few weeks, the left side of my beard started getting thin again. I paid for my own inspection and of course – mold was discovered in the basement.
The spore levels were around 1000 in my apartment which is probably just enough to screw with me. I’ve had 2 new spots which filled in after a few weeks of steroid injections which I’m still going for to this day. I decided to temporarily stay with my parents but noticed I was getting some of the same symptoms while sleeping on the 2nd floor.
At this point I decided to buy my own air testing machine. My parents 1st floor level was fine but their 2nd floor was 1,200 of penicillum/Asp mold. They are currently going through their own mold remediation and hopefully will have a safe home by the end of the week. Just to prove my point even further, I tested my mother in law’s house which had a nice low mold spore count of 400.

February 2019

My landlord cut out the moldy sheet rock but did not have the building professionally remediated. They still have a 3,000 count in their basement and as of now my first floor scored a 300.
For now I’m undecided if we should stay and have been exploring other options. My belief is that the mold spores will continually travel throughout the home and will probably get worse as soon as it rains or gets humid. We are currently still trying to get them to go forward with remediation but there are currently no laws or legislation on to how mold has to be removed. If the health department can’t see it, then it’s not considered a problem.

The future

Worst case scenario, I’ll go back to my parents until we figure out a new living situation. I’m not sure what other kind of damage this mold could be doing to my body and realize I need to do my best to avoid it at all costs. I know going forward I’m going to be very limited as to the places where I can live.
I’ve come to realize that the craze of flipping houses in America is causing much of the mold problem. These amateur contractors just looking to make a quick profit, buy old leaky houses and throw sheet rock up over dirty walls which just provides a breeding ground for mold.
If you have alopecia or other auto immune diseases, consider getting your home or workplace inspected. Maybe it’s a place you frequent normally like a coffee shop or a gym. Mold might not be everybody’s trigger but it is definitely mine.
A friend of mine once told me a story of a relative of his that had alopecia totalis for four years. She eventually switched jobs and had to move out of her apartment. Shortly after moving, her hair grew back….Of course everyone told her that her current job must definitely be a lot less stressful than her previous one.

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