mold

Climbing the Mountain – and getting knocked back down

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.

Mold detection

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.

Getting married

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.

Stomach problems

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.

TSTWGA

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.

November 2020

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.

Helping others

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.

Right now

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…..

Contacting Mike

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.

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.

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.

From Hair to eternity…

Info and pictures of my alopecia journey this far