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Real People.........Real Stories

Toxic Mold can affect anyone anywhere around the world.  The misconception is that mold is only a problem in low income or dirty housing.  This couldn't be farther from the truth.  Toxic Mold can grow in buildings, schools, churches and even new construction homes. The following people have chosen to share their stories so that they can help others realize the importance of preventing mold formation, growth and mold illness.

Below are some real life stories of victims of toxic mold exposure:

Thursday, March 05 2020
Beth, Simsonvillle - SC (Workplace Mold)

My story began when I started feeling bad in about 2006/2007. My first symptom was pouring nosebleeds and I had never had a nosebleed in my life.  Later in my story, my daughter hugged my legs. That night, she cried out that she needed a tissue, so we told her to grab a tissue. When we went to get her up the next morning, she had blood caked all over her nose/mouth, all in her hair and all over her comforter. 2 of us had nosebleeds.  I was terrified!!!



My dilemma with the "Western Medicine Rabbit Holes"
 and a lack of accurate Diagnosis (Symptom Chasers)

I started seeing a family doctor. We went down the path of checking thyroid because I had family history of that on both sides. My thyroid labs would turn out fine, but I was pretty convinced it was a "sub-clinical presentation" that was being missed. My doctor told me "I was asking him to find a zebra and he only hunted horses".  I asked for a referral to an Endocrinologist. He referred me and they refused to see me because my bloodwork said there was no problem.  They said  "If it was totally out of whack, a PCP could've diagnosed it."  Isn't that what the specialists are for?

I then started to develop a lot of pain.

.......And here go the "common referral games that conventional medicine puts you through....READY?

PCP's (clueless): The Primary Care Physician couldn't figure out why this was happening.........
Insomnia (what is going on?): Then, I could no longer make it through the day without a nap. Insomnia was a problem.   So, I asked for a sleep study. My PCP referred me for that. My sleep study came back fine as well.
Physical Therapists (negative):..... so he sent me to physical therapy suggesting maybe I had fibromyalgia.
Fibromyalgia (negative): ......My first visit with PT, they said "not a chance you have fibromyalgia. I would not be able to touch you like I'm touching you if you had fibromyalgia". So, I continued PT for a while......
Chiropractic (still not the root cause): .......Then I went to a chiropractor and got massages, but nothing was really alleviating my pain, but for a very short time. I was spending $90 a week on the chiropractor for the adjustment to only last 30 minutes, so I just stopped going.
Endocrinologist (not helping): .....I sought out an out of pocket Endocrinologist at some point. I had found that this doctor used to be in my area, but had moved to Charleston, and was still coming to Greenville to treat patients. This led me to believe that maybe the Endocrinologists here just weren't very good, so maybe they were disregarding me. I thought, well, let's see what he has to say. He told me to make my diet very bland because maybe my stomach was just churning all night keeping me from resting well. He also decided to just try me on thyroid medication to see if it helped. I can't remember whether I felt like it helped for a while or not.
Internal Medicine Dr.  (back to the loop again): After a while of paying $150 per visit (plus insurance I wasn't utilizing), I switched to an internal medicine doctor. Without question, she continued me on thyroid medication and I would later discover that my bloodwork was now showing I absolutely should not be on thyroid medication. I also started having trouble focusing during this time, so she put me on Focalin and we tried Ambien to help me sleep. I didn't want to get addicted though, so I would only take it on Sundays and Wednesday to try to "start the week" with a good night of sleep and then get a good night's sleep mid-week to finish out the week. I believe that was from about 2009-2011.
Neurologist (rabbit holes): .......In 2012, I believe, I started experiencing a numb tongue and hands, so I went to a neurologist. I thought "maybe I have MS". He evaluated me and said I did not have MS, but a "sensory disturbance". Still no real answers or improvements and no recommendations to help this "sensory disturbance". By this point, I had just kind of given up to suffer.
My Heart!! (Cardiology, another rabbithole): I started having chest pains and windedness. I went to urgent care. They did a chest X-ray and EKG and said my heart was fine, but I might have a pulmonary embolism. I was 39. I went to the ER and they said I had no risk factors for a PE and didn't think doing a CAT scan was necessary but told me to follow up with a cardiologist. I did. He said I had negative risk factors for heart problems, but out of an abundance of caution, we did an Echocardiogram. It was normal. I was so defeated.

Gastroenterologists, Gut Issues and (Dissmissive behavior and no guidance) - At some point, I developed constant diarrhea and terrible stomach pain. I went to see my gastroenterologist. They recommended a low fodmap diet, but there just weren't really clear guidelines on what was/was not a fodmap, so I started with just removing dairy. That did not help.
Gynecologist (comorbitity is becoming clearer): At the same time, I was going to my gynecologist for some pain I was having. I thought maybe I had endometriosis. They ran some tests and determined that my progesterone was really low and I would have a really hard time getting pregnant, when I was ready to have kids. They did an HSG to make sure my tubes were open and they were ($1000+) and sent me to fertility specialist. Everything that was supposed to be high was low and everything that should be low was high (ie, testosterone). They said "this is what we would expect to see in a 41 year old". I was 33. It was difficult to hear. They even told me 0% chance of becoming pregnant without IVF. IVF was just not something that I could get comfortable with, so I spent a lot of time praying for a baby! Thankfully, God answered my prayers! At some point, I just became miserable with the pain in my hip/back.  In 2013, I had a miscarriage and had to have a D&C because my body wasn't flushing it. After all my prayer, I finally conceived and had a baby girl in 2014. I was diagnosed with gestational diabetes during pregnancy.
More "fake diagnosing" of symptoms and "drugs to match":  The NP at work diagnosed it as sciatica and prescribed Meloxicam. That didn't help at all.
Loopty-Loo.....(Back to the good-ole PCP): She sent me "BACK" to my new PCP and they did an X-ray and said it was not sciatica.
Orthopedic (Rabbithole):  They referred me to an orthopedic. They did more X-rays and tried cortisone shots 2 different times. They did not help. I don't believe they ever told me it was diagnosed as "SI Joint Dysfunction".
Loopty-Loo...back to PT (physical therapy): I went back to PT, but because it wasn't targeted, it also didn't help.
Gallstones? Liver? (I need answers!): I thought "maybe I've got gallstones in my bile ducts" since gallstones produced a major pain in my back when I had them, so I went back to the NP at work to request a blood draw for liver enzymes. That was fine too.
Massages & Accupuncture? (At this point, I'm starting to self-diagnose): I think I then had a massage where the massage therapist said "what you're describing sounds like SI joint dysfunction". I was so excited to have a possible "diagnosis" that could be treated. Back to PT I went. Sad that I had to tell THEM what the issue was, but at least we had something to work with. The head guy was fantastic, but he had to get a book out to see how to treat SI Joint Dysfunction. The therapy helped, but again, it wasn't long term.  

Since the pain wasn't being fully controlled, I tried acupuncture. It was the thing that gave me the longest lasting relief, but I couldn't afford $80 sessions all the time.

I was so done....The Symptoms were becoming unbearable with no real diagnosis
I was still MISERABLE everyday at work. I couldn't focus, I was in so much pain. I wasn't sure if it was a focus problem or just that the pain was keeping me that distracted. I would keep reheating a rice bag throughout the day to help alleviate a little pain to make it through the day. Meanwhile, I had been taking naps in my car for years just to make it through the day (as had several other coworkers).

 

WAS ALL THIS RELATED TO MY ENVIRONMENT? 

In 2008, I noticed that there were a lot of water spots at work and I definitely noticed that my coworkers coughed and seemed to be sick all the time. I mentioned it to management, but they ignored it. I really didn't have any clue about mold at that point though, so I didn't pursue it further. My coworkers were just all blown away at all my health issues. They would say "you eat healthier than anyone we know". It was true. I was so committed to health.

In 2016, there was VERY VISIBLE black mold creeping up the tiles above my head at work. I went to get the NP and said "is that safe". She said "it's definitely not good". I asked if she would encourage management to do something about it. They would swap out the tiles and 2 days later, it would be back. Tiles became so soaked, they fell in on my coworker's desk and my boss ran a garden hose from the ceiling to a bucket to catch the water. They were constantly tarring the roof and working on something above our heads. They finally moved us out of the office to wrap the air handler and clean the vents/replace the wet tiles. We moved back in a few weeks later and it looked clean. I still had no idea about mycotoxins and "true remediation".


By this point, I was having trouble reading to my daughter at night, tripping over words, having trouble following along when people talked, even with things I had been doing and LOVED for years. I was even in a meeting one time and totally zoned out with my boss talking. I had always been so dedicated and laser focused, always praised for my attention to detail. This was SCARY! I was also dealing with my eyes "rolling" and frequent dizziness. I could feel my eyes roll out of focus when people were talking to me. It was embarrassing.

I decided to think out of the box and go see an alternative doctor

I got desperate and a friend told me to try this guy she had heard cracked tough cases, so I went. He did all kinds of bloodwork and initially thought maybe it was thyroid but again my thyroid came back normal, with the exception of starting to develop antibodies.

At my second visit, he asked the million dollar question....are you by chance being exposed to mold? I said "well, I was for sure in 2016" and there were water spots back on the ceiling tiles in my office at that time.


FINALLY:  "A Mycotoxin Urine Sample"
I showed him the pictures of the mold from 2016 and he ran the mycotoxin profile. My OTA (which was Ochratoxin) showed up elavated.  

"Surviving Toxic Mold says:  Ochratoxin is a secondary metabolite mycotoxin produced by many various species of indoor water-damaged molds" 


ERMI testing of my environments
But, I was still being exposed. He had me do an ERMI cloth dust test at my house. It was higher than it should be, but the Hertsmi was below 10 and we had not had any water damage so I felt it may not be my house. So, I did an ERMI at work. The ERMI was a 12 and the Hertsmi was 14. This was 2 years after the last "clean up". I gave them the results, but of course, they didn't think my office was the problem because "you're the only one affected".

Toxic Mold was at the office
People complained all the time of "feeling fine until they got here". They also would complain of how musty it smelled in the office. As you can see in the photo here of my temperature and moisture meter monitor, the humidity in our office would be as high as 74% at times and of course, there were water spots constantly, repeatedly getting wet.You'd hear the drip of water on the tiles often. They finally told me I could wear a respirator at my desk since I was the only one affected. They did clean the vents again and afterwards had a meeting to tell us "if we had a problem, it was in our house, or our car or our tree stand, but it was NOT here", after admitting they knew they had a problem 15 or so years prior. I had been there 14. I knew they weren't going to correctly fix the problem, so I knew I had to leave. A guy stopped me one day to ask why I was wearing the mask and said "there were guys in full Hazmat suits in the ceiling last night, looking like they were going into biological warfare".

Focusing my testing, treatments and actions focusing on "Toxic Mold" instead
I started binders in November 2018. Also, being exposed to toxigenic molds in "indoor water damaged environments" can cause serious inflammation and gut dysbiosis.  You can read more studies and scientific facts about how these exposures can effect your gut here on the SurvivingToxicMold website.  He actually said the exposure to the mold had worn down my gut lining allowing undigested gluten particles in that my body didn’t recognize. https://www.survivingtoxicmold.com/symptoms_list (Which is very consistent with scientific studies in relationship to the exposures of toxigenic molds/mycotoxin and gut issues - https://www.frontiersin.org/articles/10.3389/fcimb.2018.00060/full

I had a neuroquant MRI in December 2018. Not only was my nasal cavity almost completely closed from my turbinates being so swollen (thank you body for trying to protect me!! I had complained for YEARS of my nose feeling like it was collapsing...turns out it kind of was), but I had 6 areas of my brain that had been affected by mold.

Cross-Contamination of my home (From my office building)
I don't remember when it was, but we had a remediator that had been through CIRS inspect our home and they said "if you weren't sick, I wouldn't recommend doing anything". We re-wrapped our crawlspace out of an abundance of caution and he identified 2 small spots of mold that he tore out. One was a window sill in our bonus room and another was in our garage....both of which were as far away from my bedroom as they could be. When we compared the ERMI reports, we realized that all the molds listed at my home, were also in much higher quantities at work. They felt absolutely confident that it was cross-contamination of my home, from being exposed for 14 years and bringing it home on my clothes/hair.I had to leave this job I had loved so much.

I had to quite my job / Practicing avoidance...my path to healing
I went to an interview elsewhere, but because I couldn't smell, I didn't notice fumes. In a few weeks, when my turbinates had shrunk I started to notice the fumes. I was completely clueless about mold causing you to develop a chemical sensitivity. I definitely had improvement, but I was improving as much as I should. I was still coming home in the evening, struggling so much to complete the tasks I needed to complete (dinner, etc). My head hurt so bad. Then, come bedtime, I was wide awake again (my bloodwork showed my MSH was 15). I would tell people that it felt like my brain was swollen. I tried to find another job. Within minutes of being in the interview, I could feel numbness starting, so when they offered me the job, I knew I could not accept. By November 2019, I had convinced my husband that I needed to quit my job to heal, to be in the only environment I could control. I quit 11/12/19. Within weeks, my brain no longer felt swollen and in a few months, almost every symptom resolved. So much so, in fact, at 41 years old, I was pregnant. WOW! I had to stop taking binders because of that fact and I just continued to improve. I am still struggling with multi-step directions and memory, but I hope that will be restored. My pain has COMPLETELY gone away. I haven't had to use the rice bag at all. AMAZING after being in chronic pain for 10 years! My stomach issues have pretty much completely resolved, unless I eat gluten several times or days in a row. I am sleeping better! My energy has not really returned, but that just may be the pregnancy.

I figured it out...and now I can help others!!
Now, anyone that I see with all these health problems that they aren't getting answers for, I ask if they are being exposed to mold and without fail, all of them answer yes. It's just wild!!

Posted by: Surviving Toxic Mold AT 10:21 am   |  Permalink   |  Email
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