My Mold Illness Story

I’ve been meaning to write since my first stay at the environmental illness treatment center in SC. We were anticipating and preparing for months for the trip, and it was over so fast, but not without plenty of pain and suffering. The beginning of my mold treatment has been tough. I can’t complain, though, after meeting with the dr.’s and staff at the center, I now know that all my health issues from early childhood are all connect in one great big web. A web of an unforgiving, often invisible disease called mycotoxicosis. At least I am now on the right road. Before I was lost, just barely getting through my days, completely in the dark as to why I was so very sick. I wondered why I kept getting worse despite so many treatments and therapies over the years. I agonized over the family and friends I lost due to them doubting, or not understanding why I was always sick, why it was always one thing or another. I didn’t fully understand it myself, but I knew something was not right. For most of my life I’ve struggled to make it out of bed, yet I’ve had people tell me it was in my head. Now I know that I’ve actually been battling a life-threatening chronic illness for probably my entire life.

My chronic illness mystery is FINALLY solved. The environmental physician we met with said my symptoms since age 4 were classic of mycotoxicosis, or mold illness as it is more commonly referred to. My family had lived in many water damaged homes throughout my life that were infested with mold, including black mold. Most of it was invisible, and we had no idea of the dangers of mold. My progressive symptoms over the years lead me to dozens and dozens of specialists, but none could figure out what was wrong with me. Some would say it was just a flu (a never ending flu?), some said it was in my head. Many were just puzzled as to what was causing all my symptoms including debilitating migraines, chronic fatigue, gastrointestinal problems, body wide muscle and joint pain, vertigo, cognitive dysfunction, chronic severe allergies, breathing problems, ringing in my ears, insomnia, anxiety, heat sensitivity, low grade fevers and many more. When I was 13 I had a benign tumor in my breast and stayed about a week in the hospital when they had it removed. At that same time my dad was in the hospital fighting several types of cancer, including prostate cancer, and bone cancer. He later died from brain cancer. Then my mother got cervical cancer and thank god, she beat it. It seemed everyone in our house seemed to be terribly ill. One of our beloved cats died from lung cancer, and the other suffers from sinusitis, twitches, balance problems, skin problems, breathing problems, and is underweight despite a nutritious diet. I too suddenly lost about 20 pounds when I got much worse at age 24. I dealt with severe intermittent depression throughout my teen years and early twenties.

Anemia, chronic leukopenia, fibrocystic breast disease, dysmenorrhea, and chronic infections plagued my teen years, and continue on today. At 23 I got the long awaited fibromyalgia diagnosis, and then later chronic fatigue syndrome (also long overdue). At 24 I found out I had hypoxia, which I believe I had for many years prior, but no dr had thought to test for oxygen levels before. There were a few instances growing up where I suddenly stopped breathing, and my parents told me I would turn blue. Summer 2011 I ended up in the ER from crippling pain, found I had ovarian cysts, and adenomyosis, a form of endometriosis, which explained my abnormal unbearably painful heavy flow which would 6-8 days, and why my insides routinely felt as if they were being shredded by a machete. I felt I lost a big chunk of my brain that summer and I will never forget the bizarre an terrifying experience I had on the evening of July, 26th, 2012 in Bethlehem (you can read about it here). My dr. believes based on the neurotoxicity and my symptoms, (memory loss, loss of balance, vision, hearing, neurocognitive issues etc.)  I have damage to my prefrontal cortex, neurotransmitter, brain stem, and severe hypothalamus damage, which can explain my autonomic dysfunction. At 25 I began suffered from painful chronic liver and kidney infections would come and go. After years of severe pelvic pain I was diagnosed with interstitial cystitis, and like usual the pain meds I was given did absolutely nothing for my pain. Dozens of more symptoms emerged in my mid 20’s; seizures, hypotension, vasovagal attacks, worsening cognitive dysfunction (severe memory loss, confusion, trouble with speech and word recall, saying, hearing, and reading the wrong things, trouble with keeping up with conversations, mixing up numbers and names etc), more vision and hearing problems, chronic pneumonia, hot flashes, cold sweats, shaking chills, loss of balance (I fall over just standing), peripheral neuropathy, fasciculations, muscle spasms, muscle weakness, tremors, hallucinations, hair loss, severe weight loss (I’m 5’5, 90 lbs), severe gastrointestinal issues like chronic severe nausea, gas, diarrhea and constipation, bouts of vomiting, and dozens of other debilitating symptoms. Throughout my life I battled several addictions, OCD, and behavioral issues, not knowing there were dangerous toxins poisoning my brain. I was diagnosed with thyroid disease and most recently POTS, a severe form of dysautonomia. This explains the vasovagal attacks where I get severely lightheaded, arrhythmia, tachycardia, nauseated, temporarily lose my vision and hearing, sweat PROFUSELY, feel like the life’s being squeezed out of me, and in severe attacks I vomit, and more often, faint, or “blackout” as I call it (usually for a few second, sometimes for a couple minutes. There have been times I stopped breathing once I was out. VERY scary for my fiancé). This happens when my blood pressure drops dramatically and fails to pump up enough blood to my heart and brain, which can result in fainting to immediately raise the blood back to the vital organs. Simply put, it feels like you’re dying. So terrifying until I knew what was wrong. I became more ill, and more disabled as time went on, and I had to quit school, a job that I loved, and any bit of a social life I had left was taken away from me.

I got a misdiagnosis of chronic neurological lyme disease, and was taking several antibiotics for over 6 months, only to get much worse. I was taking probiotics together with the antibiotics, and tried “pulsing” them (a few week on a few weeks off). Still, the antibiotics destroyed my digestive system as it killed the little bit of good bacteria I had in my gut. Jan, 6, 2014, after weeks of getting very little sleep or food in due to searing pain in my side, I ended up in the hospital with a mass in my large intestines. When I was discharged from the hospital was in severe pain, vomiting, and weaker than ever before. The feeling of desperation now burning like a wildfire.

I started twitching uncontrollably at night, and my restless legs and body got more painful. I was never able to sleep more than a few hours at night and when I was able to sleep I woke up many times from my pain, coughing, or twitching. On the other hand I was too exhausted to stay awake through the day, and I was getting so weak that I could barely move. I needed assistance going to the bathroom, showering, getting dressed. There were days I was so weak I couldn’t lift my arms, or even a finger and I had to be fed. It was so hard to accept that I had NO control of my body, and whatever was taking the life from me was acting faster as time moved on. I watched myself deteriorate before my eyes, and there was nothing I could do about it. It wasn’t until my fiancé started getting very sick as well, which is around the same time I got much, much worse, that my dr. thought to test our house for mold. And thank goodness she did. Little did I know my home that I spent so much time in was killing me slowly. I honestly don’t know if I’d be alive today if I had stayed in that house.

It was Jan 7th, 2014 when the test for the house came back positive for SO MANY species of toxic mold, including black mold. The levels of the toxic molds were so high, my dr. said it was unlivable conditions, and advised us to move to a safer environment right away. We treated the situation as it was a fire, discarding everything including sentimental items and all of my late father’s belongings. The hardest to part with were the books my dad had written, and published for me when I was 4, and knowing I will never see them again still tears me up a great deal inside. This was incredibly hard and stressful time for me, and our family. The move was extremely challenging, and exhausting in my physical state. After we moved I was still very sick, but it seemed I was getting a little better in the following months. However, I still had numerous symptoms, and several months later new symptoms emerged, and I slipped back into the sicker-than-sick state but this time I was worse than before. I was coughing up blood, and I felt as if my body was constantly running a marathon. The mycotoxin test I took 5 months after moving out of mold infested house #7 (we lived in at least 3 homes with confirmed mold exposure, every house had water leaks and/or damage suggesting presence of mold.) came back positive for ochratoxin a, trichothecenes which the most neurotoxic and fatal mycotoxin, and alfatoxins, which are highly dangerous carcinogens. Dr. said my numbers were high considering most people have false negatives, since you generally have to provoke the mycotoxins to be released from fat cells in order to test positive on the mycotoxin panel. If someone has mycotoxicosis, sauna, or some form of heat depuration prior to testing can provoke the mycotoxins to show up on the panel. I did no provoking of any kind, I just sweat almost constantly since I’ve gotten very sick (summer of 2012 is when my illness took a turn for the worse). False negatives could be another reason mycotoxicosis goes so undiagnosed, in addition to the wildly inadequate lack of knowledge of environmental illness, let alone long-term mold illness. With the toxic levels in my body so high, it’s no wonder my health continues to deteriorate. My quality of life has greatly diminished in the last few years, and as of the last 2 months I’m in a wheelchair (mainly due to my POTS).

The environmental physician I met with at the center explained to me that mycotoxins are a serious, highly unrecognized, detrimental health crisis. According to a recent study (Detection of Mycotoxins in Patients with Chronic Fatigue Syndrome), a group of CFS/ME, and placebo subjects were all tested for mycotoxins – %93 of the CFS/ME patients tested positive for mold related toxins. Many people with mold illness are misdiagnosed with Fibromyalgia, MS, Lupus, Parkinson’s, Cystic Fibrosis, Rheumatoid Arthritis, mental illness, various autoimmune diseases, you name it. Most dr.’s just don’t know to test for mycotoxins, or are wrongly convinced by the CDC to think that only the immunocompromised are effected. He went on to explain to me that my body is overloaded with toxins, allergies, infections and stress. This overload causes the immune system, and other systems (autonomic nervous system, gastrointestinal system, etc.) to become suppressed and over time causes irreversible damage. Instead of “tagging” the bad toxins and getting rid of them, my body attacks itself. It is said that about %28 of the population has genotyping that prevent their bodies from properly removing mycotoxins, and other biotoxins due to the lack of necessary antibodies. It takes years to rid the body of mycotoxins, and some are harder to kill than others. The problem is the body has such a hard time differentiating itself from the mycotoxins at a cellular level. The longer the exposure, the longer the treatment and recovery process will take. In some cases, usually after long-term exposure, the damage to the organs and cells may result in death, and even aggressive treatment will be ineffective, as it is already too late. My dr. has mentioned I have biofilm, which means the mycotoxins have built a kind of wall of protection against medicines and detox. This will make it even more of a challenge in my treatment.

To start the treatment process, I have to reduce my total load. This so called total load refers to toxicity, infections, allergies, and stress. We will approach each issue individually. They’ve began treating my toxicity with a ton of antifungal prescriptions, supplements, regular IV therapy, and a strict antifungal diet. Once I become more stable I can move on to stage 2 which for me will be an intensive in-patient 4 week long treatment program where we will continue immunotherapy (I got too sick to complete the antigen injections during my stay at the center), and start a more aggressive detox protocol which will include daily oxygen therapy, IV therapy, hyperthermia therapy, infrared massage, and physical therapy. Not entirely sure what stage 3 consists of yet, but one thing I do now is it will be an uphill battle from here. I will get worse before I get better due to herxheimer reactions (die-off from toxins), especially from the sauna, but hyperthermia therapy is the only proven way to pull mycotoxins from the brain. If I don’t see any improvement with the immunotherapy and detox protocol, we will consider antifungal chemotherapy as the next step. Antifungal chemotherapy is reserved for the most extreme cases of mold toxicity. The chemo has many severe adverse side effects, so this will be one of my last resorts.

This road I’ve been trekking may have a rough, hilly path, but at least I now have some direction. I am hopeful that this road will eventually lead me to the life I had always dreamed of having, a life worth living. I count my lucky stars I am here today. It was a total of over 26 years I was exposed to deadly mycotoxins. I now can say I’m a survivor. I will continue to fight until I reclaim my body as MY body, not the body that is a slave to this dreadful disease. As one of my dr.’s put it, “this will be the fight for your life.”

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Mycotoxicosis Symptoms List

The following are a list of the most common symptoms of fungal exposure (bear in mind, people never fit all of below criteria). Most people with some forms of Mycotoxicosis meet at least 8 of the following criteria:

  • Headaches, migraines
  • Chronic fatigue
  • Irritable bowel syndrome, nausea, vomiting, diarrhea, constipation, sharp abdominal pains, stomach lesions
  • Joint and muscle stiffness and pain
  • Fibromyalgia
  • Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
  • Chronic allergies, congestion, sneezing, sinusitis
  • Asthma, wheezing, shortness in breath, coughing, chronic bronchitis
  • Balance problems, dizziness, vertigo
  • Ringing in ears, loss of hearing (aspergillus niger)
  • Cognitive dysfunction (brain fog); memory loss, slurred speech, confusion, dementia
  • Heart palpitations, irregular heart beat, tachycardia, heart attack
  • Reproductive system complications; irregular menstrual cycles, miscarriage, infertility
  • Weight loss or weight gain (usually sudden and severe)
  • Multiple food allergies/leaky gut syndrome/altered immunity
  • Thyroid irregularities, sometimes leading to complete dysfunction; adrenal problems
  • Anxiety, depression
  • Swollen lymph nodes
  • Extreme blood pressure, cholesterol, or triglycerides irregularities
  • Bladder, liver, spleen, and/or kidney pain and problems (infections, disease and failure)
  • Vision problems (floaters, auras, blurred vision, blindness)
  • Anemia, leukopenia, neutropenia, frequent infections
  • Numbness, paresthesia, peripheral neuropathy, Bell’s palsy
  • Tremors, muscle spasms, inadvertent facial movements,
  • Neuropsychiatric manifestations; mood disorder, irritability, rage, aggression, OCD, addiction
  • Hallucinations (visible and audible)
  • Night sweats, head sweats, profuse and/or excessive sweating, excessive salvia
  • Burning in the throat and lungs (similar to acid reflux and often misdiagnosed as such)
  • Dirt-like taste in mouth, coated tongue
  • Yellowing of nails, ridges, or white marks under nails
  • Hypersensitivity pneumonitis
  • Coughing up blood, brown or black looking debris
  • Low grade fevers
  • Intermittent face flushing; called the Mylar Flush (neurological)
  • Rashes and/or hives, bruising/scarring easily, bloody lesions all over the skin
  • Nose bleeds (stachybotrys)
  • Difficulty swallowing, choking, spitting up (vomiting)
  • Burning after urination, frequent urination, dark urine
  • Insensitivity to heat and alcohol
  • Hypersensitivity
  • Multiple Chemical Sensitivity
  • Large boils on neck
  • Hair loss, premature graying of hair
  • Seizures
  • Cancer
  • Anaphylaxis upon re-exposure to mycotoxin producing molds
  • Death

Permanent problems sometimes associated with fungal exposure after treatment:

  • Balance
  • Short term memory
  • Hearing
  • Sight

My MediPort Surgery and First IV Treatments In Over A Year

On Monday this week I had my mediport implanted! I’ve been needing to get a port for a while now since my veins have been sclerosed since January one again making it near impossible to get a blood draw or IV in, even with a butterfly needle. I had a picc line last year and then had to have it pulled when could no longer afford IV treatments. Now, with the help of a very generous donation I finally have enough help to pay for some treatment, yay!!! The surgery was a success but only after 2 failed attempts. I was originally set up to get it last week, but the mixup was an error on my part. I went in to the hospital with my mom and after about 4 hours of waiting around, getting stabbed several times, and stuck with all sorts of wires and were just about to prep me for the procedure when a nurse asked me if I had anything to eat or drink after midnight. I must have missed the part in my voicemail where the nurse told me not to drink water as well as eat! I had been drinking water and lots of it. At least 48 ounces just that morning. I have POTS so you will always catch me with my massive water bottle in hand, or at least by my side…without water I feel like terrible and am likely pass out. I was frustrated I had wasted my energy and everyone’s time. Must have been a brain fog moment missing that part of the nurses’ message :/ My surgery was rescheduled for the 30th at 8 am, and I had to arrive at 7, bright and early! I was impressed at how well I did without water although I’ll admit I missed it from the second it turned 12:00 the night before and it was not easy, but the cool morning air was sure a help! Take 2 and everything was going smoothly until they sedated me. Apparently I had a crazy reaction to the sedation drugs and freaked out on the table. They said I was flailing my arms and refusing to cooperate. I don’t remember ANY of it but that’s the amnesia effect they warned me about. I woke up thinking it was over, but they explained what happened and was told they’d try again but with an anesthesiologist there to give me more anesthesia as needed so I’d stay completely knocked out. I was curious why I had a reaction, and I later found out that with mycotoxicosis there is an increased occurrence of adverse reaction to anaesthetics and all drugs that act on the central nervous system. I was nauseated and in pain, and honestly kinda anxious about the whole thing. They gave me the usual drugs for nausea, zofran, etc. and a steroid for the pain which I voiced my concern about, but the surgeon reassured me that occasional use of steroids will not be harmful to a compromised immune system, only regular use can suppress the immune. I wasn’t sure if I 100% bought that but I gave him the benefit of the doubt. They moved me back into the operating room onto the table and prepped me, once again. They put oxygen in my nose, a mask over my face, had me all hooked up again and set up a barrier around my head so that I couldn’t see or move my head. Then they advised me that they were going to strap down my arms so that I wouldn’t contaminate the incision site or swing them around incase I had another bad reaction. I was taking deep breaths and trying to stay as calm as possible and before I know it I’m waking up almost 5 hours later! Mediport is safely in and no complications this time 🙂 I was too drugged up still to feel all the pain except a sore throat, I did notice my chronic cough was worse (I’ve had a chronic form of pneumonia for over a year now), but they said this was side effects of anesthesia. I don’t remember much of anything from the hospital afterwards, but I started to come back to reality when I arrived at NHWC for my IV treatment, the first in over a year – crazy that it’s been that long already.

Claire Gets A Port

One of my best friends of many years made the hour long trip from DC to see me and it pretty much made my week. Marcia is one of the sweetest, loving, and most positive people I know, and seeing her was just what I needed. We chatted a bit and watched a little of the world cup as I waited for my IV’s slow drip’s… I had 2 huge bags of infusions. One was mainly high dose vitamins, including vit c, and glutathione which is essential for mold detoxing. There was also alpha lipoic acid and other mold meds. I was bragging to Marcia about how I didn’t feel any pain and how the picc line hurt more haha boy if only I realized that I wasn’t in pain because the drugs from the hospital hadn’t worn off yet! I found that out the hard way when I woke up the next day in excruciating pain and my cough was just nasty and took everything out of me. I’m sure my fibro is making this much harder and more painful that would be otherwise. Sleeping was a major challenge and I was lucky if I got more than an hour of sleep at once. I caved and took an ambien, even though I told myself I’d never take it again after having scary experiences on ambien in the past that I didn’t even have recollection of. (google ambien stories if you haven’t already heard the crazy side effects of this drug!) As soon as I took it I realized I take many other meds that may interact with it and surely after looking it up, I had a few “severe interactions”. Surprisingly I didn’t panic, told my fiance (who luckily is a light sleeper, which gave me some peace of mind) too keep an eye out on me. I took a lot of deep breaths and told myself “I’d be ok.” Sure enough I was OK and eventually I fell asleep, but not even the ambien was enough to keep me asleep as the pain and coughing woke me up again. The next few days was followed with the painsomnia tango as I call it – back and forth between being too sore too sleep and too exhausted to stay awake.

Wednesday I woke up with an awful migraine (accompanied by nausea, light, smell and noise sensitivity like usual), and still very sore and very weak. That day was 94 with a heat index of over 100! This was not good for my POTS. Still, with the help of my amazing fiance, I managed to get on the wheelchair and get to my IV treatment. Thank goodness I made myself go because I felt so much better after I got my IV’s. They added toradol and zofran to my bag which eased the migraine a great deal (it’s too bad toradol is only available in IV and injections, the pill form is called ketorlac and isn’t as effective), and the vitamins gave me some energy which feels wonderful! Today the port wounds are itching like crazy which is a good sign it’s healing fast. I’ve been rubbing arnica and castor oil around the sutures and bandages – still too painful to take them off but nurse says they will fall of naturally. Gross haha.

The past 2 days I’ve been able to walk on my own (with the cane) woohoo!!! Today I may even have energy to go check out the local firework display! Keeping my fingers crossed! I leave in 2 days for COEM in SC to meet with the dr.’s for my mold illness treatment. I will be there for 2 days for the consultation and testing. I don’t know yet when I will be starting the treatment down there but I don’t know what to expect at all really. Hoping for the best!

My Story/Solving The Health Crisis Mystery

I feel the need to share my story for my own record so as not to forget. More importantly though, I’m sharing so that I may help a fellow spoonie who may be very ill from the same mysterious illness I have. Since my illness story goes back to early childhood I’m going to focus on 2011-present time since that’s when I got much worse.

As far back as I can remember, I’ve always been very sick. From age 3/4 (as far as my first memories go) I suffered with many serious chronic symptoms. My very first memories were me being in pain and suffering with thing like migraines, paresthesia, asthma, allergies, body wide pain which I always thought were just “growing pains”, ringing in my ears, vertigo and insomnia. By the time I was in 1st grade I had daily stomach aches, speech issues (mainly stuttering but speech therapy at age 6 helped considerably), cognitive dysfunction such as difficulty following directions, concentration issues, and some short term memory loss. At age 7 I had a large boil on my neck that took several rounds of antibiotics to quell. By 8 my frequent migraines and headaches completely debilitated me and made me miss a few days of school each week. At 13 I developed a benign cyst on my breast which required an emergency operation, and week long stay in the hospital which was terrifying at the time. It seemed I was always incapacitated, and fighting bad viruses and mystery infections. I was dealing with far more health issues than any kid my age should, yet no doctors or test over the years could explain why. By my early teens I had dysmenorrhea (herrendous pain that accompanied my periods and nearly sent me to the ER despite 1,600mg of the strongest pain meds (I was even iven morphine at one point with no avail) and became anemic and required monthly with my hematologist. I was told I had fibrocystic breast disease, yet another mystery. It seemed I had to be rushed into the hospital every few months for one thing or another. I missed so much school due to always being sick, fatigued, and in pain, I was held back twice my 8th grade year and finally ended up having to homeschool by the time I reached high school. Throughout my teen years I battled anxiety, depression, an eating disorder and suicidal thoughts, at 19 I tried to take my own life and almost succeeded. I wasn’t the only sick one in our home. My mom had cervical cancer which she beat after surgery and a year of radiation. My dad who was sick from the time I was 13 beat prostate, skin, and bone cancer but brain cancer ended his life when I was 21. Being an only child I had to take care of my parents throughout their battles despite my own health issues, which was hard to say the least.

My chronic pain was getting worse and new symptoms kept emerging, it seemed out of thin air. It wasn’t until 2011, that I got the first diagnosis I thought explained it all – fibromyalgia. It didn’t though, I got much sicker over the years, and as my health declined I searched desperately for the answers I needed to have a chance at fighting whatever this mysterious illness was.

2011 Since my dad was died My mom and I had to work hard to make ends meet. Spring of 2011, I was working as a receptionist at a job I felt was my second home with people who I considered to be family. Being able to sit at work was to me by this point my fatigue was near crippling? Despite my best efforts I regularly mixed up numbers and write down the wrong dates and names for scheduling. I’d mess up transactions and give clients the wrong amount of money, etc. One morning, after working there for more than 2 years I tried to login to the company computer when I suddenly forgot the password I’d used every day…my mind was drawing a complete blank. I had to call my boss and I felt like an idiot when she asked me if I was hungover, which I definitely wasn’t (I was generally too sick to drink alcohol, and later developed alcohol intolerance). My memory, along with my physical symptoms was getting worse by the day, but I had no explanation for it. It was beyond frustrating.

I started to think whatever I had could be REALLY serious when one morning as I was walking to the bathroom, I felt REALLY awful; extremely lightheaded, tachycardia, arrhythmias, nauseated, hot, sweaty, I was overheating. Within a few seconds I got tunnel vision and temporary loss of hearing. I seriously thought I was dying when I suddenly blacked out and collapsed. I woke up not quite knowing how I had got on the floor and was confused as I had seemed to forget what had happened a few minutes (seconds?) prior, but I was grateful I didn’t hit my head on the sink or tub. A few hours later I started recalling what had happened but shrugged it off as a one time occurrence. I was later reminded this had happened to me once before at age 18, the same symptoms led to me passing out briefly. I had an MRI of my brain and when it came back positive, we left it at that.

By my mid twenties I was getting even sicker. My stomach pains became severe and even sent me to the ER at times, so I was sent to a gastroenterologist and after an endoscopy and colonoscopy (my second to date) I got an IBS diagnosis, which meant nothing on it’s own. At the same time I was referred to another hematologist and an oncologist who diagnosed me with leukopenia (chronic abnormally low white blood cell count). That explained the infections, and some of the weakness and fatigue, but it didn’t explain all the other symptoms nor did anyone know WHY my body wasn’t producing enough white blood cells. My MSH always came back low as well but no one told me what this meant. I was told it must be the fibromyalgia, but I knew in my heart that just wasn’t an answer by itself – FMS is a syndrome not a disease. By August 2011, my entire body was so riddled with pain and profound fatigue I had to quit my job. This left me feeling pretty low, I felt I was a quitter and should’ve tried harder. I had seen many doctors the last few months, some were puzzled as to what was making me so sick and some would even repeatedly tell me I had the flu! I agreed I had a lot of flu symptoms but how could I have the flu almost everyday for years on end?

With each year that passed my physical and cognitive health declined. Still, I had to make a living so in October 2011 I forced myself to try and go back to work. I had it in my head that keeping busy would get my mind off my pain. I found a job I loved working for an environmental nonprofit in DC. The commute was long and exhausting, but It was the closest to my dream job I’d ever gotten. I loved that I had the freedom to be outside at work where it felt easier to breathe and life was buzzing all around me. I was hearing news that I was on the brink of a promotion when I got so sick I had to stop working again. I was running to the bathroom several times in an hour, and was too brain fogged to think straight most of the time.  I had several trips to the ER from nasty bouts of vomiting. The fact that I was able to stand on my feet for 8 hours a day (plus over an hour metro ride to and from work) for 5 days a week for 2 months still amazes me. I know I tried my best and pushed myself until I literally just couldn’t do it, but I still felt like I let myself, and everyone around me down. I was completely burned out.

November 2011 I got the long overdue diagnosis of Chronic Fatigue Syndrome. At that time I was prescribed cymbalta for my fibromyalgia, but had immediate serious side effects such as depression and suicide. A few days before Christmas I contemplated suicide, and ended up in the psych ward of the hospital until they concluded the suicidal thoughts were a direct result of the meds. Before starting the cymbalta I was not depressed DESPITE my health condition, loss of job and social life. I was released on Christmas Eve and felt overwhelmingly grateful and fortunate to be home with my loved ones.

2012 I  moved in with my fiance and his family to have a support system since I was on my own and couldn’t handle my health issues on my own. I stopped the few medications I was on (pain meds would never help anyway) and ventured my way into a naturopathic route to healing. I cut out all soda, caffeine and alcohol (by this point my body had NO tolerance, even kombucha tea would me very sick). I was told exercise would help my fibromyalgia and my CFS so I started a regimen of gentle yoga several times a week. I tried to incorporate heavy breathing since my oxygen levels were alarmingly low. Eventually I tried to step it up a notch and tried a treadmill, but after a just few seconds my heart raced so fast it felt as if it was beating through my chest. I was completely winded, my legs got so tired and shaky, and my entire body was burning from intense muscle pain. Climbing up stairs became more of a challenge with each passing day.

May – By late spring I had daily arrhythmias and tachycardia. I had chest pains and was short of breath but my asthma inhaler couldn’t help. I began to feel faint upon standing more frequently, and my RLS got worse by the night which made me dread nighttime despite being a night owl. I started having hot and cold sweats and shaking chills intermittently throughout the day and night, at times waking up several times a night with drenched clothes and sheets. Nighttime hallucinations were becoming more of a regular occurrence (although frightening every time), and contributed to me losing even more sleep. The healthy and natural lifestyle changes I made didn’t seem to help my condition, and in fact I was getting much worse.

Summer 2012 marks the beginning of a MAJOR flare up which I still haven’t recovered from to this day (2 years later). My condition declined drastically when I become severely ill after a trip to Palestine with my fiance and his family. It was my first night in Bethlehem and I knew something was horribly wrong when I experienced a terrifying episode which much later down the road I found out was probably my first partial seizure. I was in the back of a car on the way to get meds for vertigo which was really bad from the long plane ride. Suddenly I felt as if a brick slammed against my skull from the inside. Within a minute or so I became very disoriented. I felt so odd and my head had a weird tingly sensation. My vision and hearing were coming and going. I tried so hard to think and see straight but it was like my brain was disconnected from my body. I tired to the best of my abilities to cry for help, and to muster up coherent words to explain my despair but I couldn’t. I don’t remember if I was able to get one word out.

I couldn’t stand without getting lightheaded, tachycardia, and arrhythmias. I felt like I was constantly running an intense marathon and I still do. My thirst went rampant, I always felt parched no matter how much water I drank, and was always needing to pee. People thought that was diabetes, especially my mom, since my dad was diabetic, but that was negative despite having hypoglycemic episodes every now and then. Lymph nodes I didn’t even know existed throughout my body became enlarged and have been painful and swollen ever since. I noticed my clothes were fitting really loose, and I was hearing concerns on my shrinking frame. I was already underweight so I couldn’t afford to lose much. I always had a voracious appetite, but the GI pain, severe chronic nausea, and now vomiting made it so hard to eat.

I spent the majority of the 3 weeks I was in Bethlehem either confined to a bed in constant agonizing pain, or in the hospital hooked to IV’s. Nurses would come over and inject me with powerful pain meds which eased the pain for a few minutes, maybe a couple hours if I was lucky. At night I wanted to die to escape the pain since the nurses were off and I had no relief. I felt as if my body had literally become a personal torture chamber. I was in some of the worst pain I’d experienced in my life, and it was every inch of me that ached and throbbed immensely. I layed in bed wondering when I would wake up from my real life nightmare.

That august an ultrasound showed I had ovarian cysts and I got a diagnosis of adenomyosis, which is a form of endometreosis. This explained the dysmenorrhea and my heavy blood flow that would last a week or more. I was heartbroken when the ob/gyn told me this meant I’d have a difficult time getting pregnant in the future. At the same time I got several infections including the worst UTI of my life. I was vomiting continuously, sometimes just from the intense pain. Often I’d throw up bile since I was usually too nauseated to eat. IV fluids became by main form of sustenance. I was so weak and had to travel with a wheelchair for the first time. By the time I got home from our trip I weighed 94 lbs, the lowest I had weighed since I was in grade school.

In September I was kicked out of my fiances house when I became too much for them to deal with. They couldn’t understand what was going on with me, and thought I was weak or exaggerating. They thought it would be better for me, maybe, but they just couldn’t understand my condition was so dire and that I needed all the help I could get. I got a lot of people saying it was “all in my head” which was incredibly hurtful. If only they knew what it was like to give it your all and still be defeated. To desperately want to leave your body if only for a minute to escape the never-ending pain. To lose your quality of life and not understand why you are so very sick.

Upon moving back into my old residence my nighttime hallucinations became more frequent, and during the day I was having regular tachycardia and heart palpitations. I felt I was getting weaker by the day, but at this point I still had energy to get out of bed most days, at least. My brain fog was starting to get severe. I was forgetting basic things like which side of the faucet was warm or cold, and names of everyday things like banana. My anxiety got worse, I began having severe anxiety attacks and panic attacks, often brought on after a tachycardia or arrhythmia episode, since I didn’t know what was going on with my heart at the time. I was deteriorating so quickly at such a young age, and the future started to looked grim.

I was diagnosed with hypothyroidism and started taking a hormone for my thyroid everyday.  I found out I’m allergic to over 50 foods and that because of leaky gut syndrome my body wasn’t properly absorbing nutrients from the food I ate. Food particles seep through my intestines and end up in my blood stream. This triggers an autoimmune response as my body sees the food particles in the bloodstream as a threat and goes into attack mode. This explained some of my symptoms such as itching, headaches, brain fog, fatigue and the IBS – allericgic reactions. I started taking probiotics daily to introduce good bacteria into my gut. By december 2012 I had to start receiving high-dose vitamin IV infusions to replace the necessary nutrients my body was lacking. The regular IV’s seemed to help give me the energy I needed to get by, and I started experimenting with different sleep medications, prescribed and natural. I was feeling a little better and believed I’d keep improving, as it seemed I finally was getting some control over my illness.

2013 – My infusions were helping. I had energy to make it out to the grocery store or even out for a brief nature walk a couple days a week. I almost felt like a somewhat “normal” person again, but I still had many symptoms, including the relentless pain and fatigue, and I depended on those infusions to make it through the week. After a few months my veins sclerosed (hardened and rejected needle punctures) from all the IV’s. I had to get a picc line in order to keep receiving my infusions, and get my regular blood draws. After about 5 months we could no longer afford to pay for the IV treatments.

Before I knew it I was very sick again. I had a couple more fainting episodes which I later found out were either autonomic seizures or vasovagal syncope attacks. One time I blacked out, and stopped breathing. My fiance thought I could have been dead when my face and lips turn blue. The paramedics were called on a few occasions, but by the time they came I would be conscious and stable. That June a blood test came back positive for HH-6 virus and mycoplasma pneumonia, and my CD-57 count was far below the normal ranges. This meant my immune system was compromised, or suppressed. This means leaves me more susceptible to infections, virus’ and tumors, cancer, and virtually anything. She said with levels as low as mine she suspected I had either HIV or chronic and/or late-stage lyme disease. I later found out this was not true, and other autoimmune diseases and other very severe diseases that attack/impact the immune system can lower NK counts. I took a test to rule out HIV. She told me that I’d have to treat for chronic lyme disease, and that I’d have a tough road ahead of me. I’d have to start at least one year of aggressive antibiotic treatment right away, and I’d feel much worse from the die-off of the lyme and other toxins before I start to feel better. Little did I know then that I did not in fact have lyme but different environmental disease. July/August – about 2 months into the first round of antibiotics azithromycin and minnocycline, and the universe gave me a much needed break. My symptoms were not as bad and for about a month I was in a remission of a sort. I still had my days where I had vomiting spells, migraines, and the crippling chronic pain and fatigue, but to a lesser degree. We were desperately hoping the antibiotics were working faster than expected and I’d continue to improve. I was even able to go to the beach for a few days, a big improvement from not being able to get out of the house much. But then things changed the day after my 26th birthday. I thought it could just be a flare-up, but I was deteriorating rapidly this time. By the fall of 2013 simple tasks like changing clothes, using the bathroom, and showering became a big challenge which required assistance. At times I was too weak to lift my arms and needed to be fed. I had to start using a cane as I became increasingly weaker, and my legs became shaky and unreliable. My memory and brain fog was getting worse again. My brain would just shut off, and I started to forget chunks of my life. My chronic cough would keep me up at night in addition to the hallucinations and night sweats which were back. My weight dropped to just 85 lbs. My life was slipping away from me before my own eyes. November – Dr. R decided it was time I take a break from all the antibiotics. I was having bowel problems from the abx destroying the good bacteria in my gut. She was hesitant but she thought it would be best to give my body a break, although she urged me to continue detoxing and making sure I get adequate nutritional support. That meant on top of a boat load of vitamins following a strict diet to avoid my food allergies which are a big trigger. My diet has been a huge challenge for me through all of this. It’s been very hard for me to cut out yeast, gluten, dairy, and sugar as well as the plethora of other foods I love. I was having serious withdrawal symptoms, which I realized after nearly breaking my fiance’s guitar in a “hanger” rage that my problems are worse that I previously thought. I later learned that the food addiction, intense cravings and aggressive behavior were all from the neurotoxicity and damage to my brain. Desperate to get better at this point, I tried many “alternative therapies”. Acupuncture, which I regret – it was painful (probably from my fibro), and not at all helpful, in fact it sent me into a flare-up. I tried reiki, which was insightful and lead me to supplements and treatments which proved to be of some help, and low level laser therapy along with detox foot and hand baths weekly. The laser therapy and detoxing helped significantly at first, enabling me to walk without the cane for the first time in months. I also had a bit of improvement with my brain fog, and my lymph nodes would be less swollen. The would focus the laser on damaged or painful areas of my body during a session, and throughout the week I’d notice the improvement. It was nothing drastic, but still it was something and it gave me hope. It seemed that by december, less than a month in I stopped getting better, still I kept with it for 5 months before calling it quits, mainly due to not being able to afford it any longer. All of december I had serious liver, kidney, gallbladder and and intestinal issues. Christmas Day I was pretty miserable. I could barely eat since the pain in my stomach and side was excruciating after a couple bites of anything, even a few sips of water would send my stomach into summersaults. My sleep was disrupted more and more by my RLS and now muscle spasms, and twitches. I had start using the cane again which was a blow to my self esteem, but I had other problems to deal with. 2014 The year didn’t start off so great. I was going on weeks with barely being able to eat and it was getting to me. I was getting so frail and people were saying I should be hospitalized. Without insurance, just an hour in the hospital was hard enough to afford. One time my entire body was convulsing for about 5 minutes…I had no control and it was just exhausting. This could have been my first complex partial seizure but we don’t know for sure. My pain and twitching was getting so bad that I couldn’t get any sleep for days and went over 2 weeks being constipated, before going to th ER. January 6-7 – I had a liver infection, kidney infection and a mass in my large intestines. I was released from the hospital vomiting and in really bad shape. I was feeling more lost and desperate than ever, I felt I just couldn’t keep going on this way. I met with my Dr. to discuss IV antibiotics when my life was turned upside down. My Dr.. suggested a mold test for our house. Turns out we were living in a home which in my dr.s words were “unliveable conditions” due to extremely high infestations of several toxic mold species (all the mold was invisible), including black mold. If it wasn’t for my fiancé getting very ill himself after moving in, my dr may have never even thought to mention a mold test. We followed our dr.s advice and moved out of the house immediately. This was anything but easy moving under my conditions was one of the most physically and mentally challenging trials of my life. We ended up having to throw out so many personal belongings, including books that my late father had published for me when I was 4 and all of what was left of him. Any memory I had of my dad was destroyed. It was heartbreaking. Despite all that myself and my family had to give up, I thank God and the Universe because I honestly don’t know if I’d be alive today if I’d stayed in that house the way I was. My organs were failing. I’ve learned that 28% of the population is estimated to get mycotoxicosis after being exposed to toxic mold, due to their genetic lack of the necessary antibodies in their immune system to fight off mycotoxins (the toxins that mold spores emit). The immune system goes haywire and the body is left unprotected against the dangerous toxins. Long term exposure to mold causes irreversible damage to the cells (even changing DNA structure), the vital organs, and specifically the brain. Mycotoxicosis is degenerative, and fatal without the necessary treatment. It is estimated that 500,000 people die from mycotoxicosis each year. I’m willing to guess it’s even more considering many people don’t know they’re ill from mycotoxins. Unfortunately many dr’s still don’t know to test for mycotoxins, and may even go as far as to say mold can’t make you sick. After moving into the new apartment, I had good and bad reactions. I gained about 10 lbs within the first week of moving despite being more active than I had been in the past year collectively. We saw this as a good sign, but I ended up losing the weight over the next month even while eating a high calorie, high fat diet. I started coughing up blood, and brown and black phlegm on a regular basis, and to this day I am still coughing up the nastiest stuff. I got a diagnosis of POTS (a severe form of dysautonomia), which explains the arrhythmia, tachycardia, and lightheadedness along with my vasovagal syncope attacks where I faint upon standing and blackout. My blood pressure is dangerously low (sitting and standing) and I have to take meds throughout the day so I don’t pass out or have an attack, but I still do, and have to lay with my legs up when I feel an episode coming on. I’m still always thirsty, urinate frequently, get itchy rashes and hives all over and my temperature regulation is off causing me to constantly go from hot to chills, and often both at the same time. I constantly sweat, and stink from the toxins which adds to my chronic nausea. May/June – The mycotoxin panel test I took 5 months after moving from “the moldy house” came back positive for alfatoxins (a highly dangerous carcinogen), ochratoxin a, and trichothecenes were the highest which are the most neurotoxic mycotoxin. Dr. W, an environmental physician said most people have to “provoke” the toxins to come out of the fat cells in order to test positive. I didn’t even do any provoking (except sweat constantly), yet my toxic levels were substantial. After all those years of exposure I’m lucky I don’t haven’t had cancer. As of May my balance has been severely affected. I’m now unable to walk in a straight line and have a tendency to fall to the side, and sometimes backwards. Between my balance, weakness, fatigue, POTS and muscle pain I had to start using a wheelchair. I’m now chemically sensitive and anything can send me into a flare; cleaning products, perfumes/colognes, makeup, nail polish, lotion, oils, etc. I have problems with my vision (floaters, auras, blurred vision) and with my hearing (clogged/full feeling, ringing, and temporary loss of hearing, especially upon waking) which is very unsettling. My cognitive functioning is slipping again, and I live with adrenal fatigue, seizures, vasovagal attacks, migraines, constant headaches, chronic joint and muscle pain, severe nausea, vomiting, IBS (diarrhea, and constipation), hot/cold sweats, dizziness, peripheral neuropathy, fasciculations, toxic encephalopathy, hallucinations, twitches, addiction, OCD, hives, organ pain, hypersensitivity, fevers, chronic congestion, chronic cough, shortness of breath, and much more. I had to cut my beautiful long hair short because there was a lot of resistance along with the weakness in my arms, and brushing and washing my hair became almost impossible task. A month or so after I cut it short, it started to fall out in chunks. I now have a bald spots that haven’t grown in to this day I try to hide with the little hair I have. {UPDATE: I shaved my head after I began losing more hair} My doc’s office put me in touch with a mold survivor who highly urged I go to the Center for Occupational and Environmental Medicine in South Carolina. A treatment center she credits for saving her life for my treatment. It would be my first real treatment since I never treated for mold illness (mycotoxicosis). In the meantime my dr. wants me starting IV therapy again with focus on nutrition and detoxing. I leave for SC in July, as my initial consultation at COEM is on the 7th. Treatment there will be painfully expensive, but with the help of my fiance’s family, an ongoing online fundraiser, and a bunch of loans I’m going to hopefully get by. My dr. suspect I have permanent brain damage from all my years of mold exposure, I will have to wait till I get approved for more medicaid benefits in order to afford the MRI, and other neurological testing. At least now I finally know I don’t have a million diseases but one big one. It took me almost 2 decades to discover that toxic mold was what was making me so sick. I will always get sick from mycotoxins, but with a lot of treatment, detoxing and time I know I can beat this. It is truly a FIGHT for me to get out of bed everyday, and sometimes I lose the battle, but I’m determined not to lose the war! 22+ years of battling a multisystemic war against mycotoxicosis. I may be labeled a mold victim, but in fact I am a mold survivor.

Mycotoxicosis Information and Symptoms List

MOLD ILLNESS

Mycotoxicosis /my·co·tox·i·co·sis/ (mi″ko-tok-sĭ-ko´sis): poisoning caused by exposure to mycotoxins.

A mycotoxin is a toxic secondary metabolite produced by mold. Mycotoxicosis, commonly referred to as mold toxicity, or mold illness occurs when a person who doesn’t have antibodies to mycotoxins has accumulated high levels of the dangerous toxins in their brain and body. “Not all species of mold produce pathogens (disease causing elements). However, many species of fungi are known as pathogenic and produce toxic substances, mycotoxins being one of them.” Indoor molds which are not visible to the human eye are highly dangerous, carcinogenic, neurotoxic, and life threatening.

Mold Is Everywhere – Are Genetics To Blame For Mycotoxicosis?

Mold is everywhere, it’s a fact that fungus is just a part of nature. Indoor mold, however is a different story and poses a serious threat to those who don’t have the biological defenses against mycotoxins and other volatile compounds mold spores emit. Contrary to popular belief, it’s not just children, the elderly and immunocompromised who are at risk for mold illness. It does in fact come down to genetics. Some people are more susceptible to getting mold illness than others. If a group of people, even those who are related, are exposed to indoor mold chances are three out of four will not be affected while one may get mycotoxicosis. This is due to their genes, and specific gene mutations such as MTHFR and HLA. One in four people have inherited HLA-DRBQ genetics which results in their immune system not being able to produce antibodies to mycotoxins. This means that at least a quarter of the population is unequipped to fight off the mycotoxins that are so prevalent yet unsuspecting in water damaged homes across the country.

 Every Water Damaged Building Has Hidden Mold

A common misconception is that the only way you can get sick from mold is through ingestion of moldy foods. Mold infestations are usually hidden behind water damaged walls, around showers and bathtubs, and above wet ceilings. Mold spores are released into the air, and in most cases bacteria, amoeba, and sometimes mycobacteria and actinomycetes will be present in water damaged buildings, in addition to the mycotoxins. These organisms release a variety of toxic substances we cannot see or smell.

Mycotoxicosis is life-threatening. Exposure to mycotoxins may result in permanent pathological, immunological, psychological, and neurological damage.

Dangerous molds have now been linked to a number of different diseases that are prevalent today, including learning disabilities, gastrointestinal disturbances and GERD, heart problems, cancer, multiple sclerosis, fibromyalgia, and several autoimmune diseases. The truth is, when your immune system is impaired, almost anything can happen in terms of negative health affects. When mycotoxins and other volatile substances invade and colonize within the body a slew of serious chronic illnesses emerge. Every cell and organ is affected by degeneration and necrosis with continued exposure to mycotoxins. Chronic inflammation goes rampant in the body and brain, resulting in debilitating wide-spread chronic pain and fatigue, a profound list of progressive symptoms, and irreversible damage. The immunological and neurological systems are the most impacted, although it becomes a systemic chronic disease as mycotoxins colonize and multiply throughout the body. This generally occurs over a long period of time with the exception of very high exposure levels, and/or exposure to extremely dangerous species of molds, with the onset of systemic symptoms more sudden and more severe.

Significant brain damage equated to traumatic brain injury has been documented in mycotoxicosis patients, most of which has been observed in subjects with high trichothecene levels, the mycotoxin with the highest level of neurotoxicity. Mold toxins are lipophilic meaning their molecular structure consists of fatty acid molecules. For this reason, mold toxins migrate to and deposit in the brain – the brain is the “fattiest” organ, consisting 60 percent of fat.

Recently more and more doctors are admitting that mold illness is a pandemic, with claims that toxic mold exposure is responsible for 500,000 deaths per year in the US. Many people in the mold illness community estimate the number of mold related deaths to be much higher, as many of the lives taken from mycotoxicosis may not have “mold toxicity” as the official cause of death but a secondary condition documented such as organ failure which resulted from the toxicity.

Several tests are available to detect mycotoxin levels in the body, including blood work and urinalysis. Still, mold illness goes predominately undiagnosed due to the inordinate lack of knowledge on environmental and toxicological diseases in the US. Unfortunately this leaves a large number of people to advocate and fight for their health on their own.

Mycotoxicosis sufferers are disabled, homebound, bedridden, and have a greatly reduced quality of life.

To this day there are no proven cures for mycotoxicosis. However, immediate treatment is critical in preventing continued degeneration, anaphylaxis, cancer, organ failure, and death. Treatment may provide some mild symptom relief, which most people with mycotoxicosis are ever so desperate for. “Many may disregard that toxic mold exists due to the fact they personally may not react to the mycotoxin. To you I say, count your blessings, for unlike us that have the genotyping that cannot clear mold from our body, [it must be paradise to be free of such a burden] be thankful you are not afflicted by any of the following symptoms: seizures, low oxygen, chronic sinus and respiratory infections, toxic encephalopathy, excruciating joint pain, [chronic] flu symptoms, gastrointestinal issues, brain fog, short term memory loss, neuropathy, asthma, depression, endocrine & neurotransmitter imbalances, kidney disease, anaphylactic reactions, hemorrhaging, miscarriages, and these are just a short list of a few symptoms we may experience due to mycotoxin exposure.

Allergy vs. Toxicity: Allergies are often prevalent in the first stage of mycotoxicosis. People who do not have the full blown chronic illness may experience acute allergy symptoms upon entering a moldy building, this is not to be confused with toxicity.

Q: What is the difference between a chemical allergy and a chemical toxicity?

A: An allergy produces hay fever-like symptoms such as sneezing, runny nose, itching, nasal stuffiness, watering eyes, wheezing, and coughing. Allergy symptoms, while difficult, are generally regarded as different degrees of a nuisance. The symptoms are usually easily observable by a physician and therefore are easily accepted and diagnosed. Diagnosis can be confirmed with typical allergy tests for elevated immunoglobulin E (IgE).

The symptoms of chemical toxicity are typically neurological and include headache, extreme fatigue, dizziness, weakness, nausea, disorientation, memory problems, slowed reaction time, peripheral neuropathy, sensory neuropathy, and personality/mood changes. Other symptoms may include respiratory difficulty, rash, burning sensations in the nose and mouth, and gastrointestinal disorders. Serious toxicity may result in impaired speech, seizures, stroke, and paralysis.

Coexisting Illnesses Commonly Seen in Mycotoxicosis Patients & Common Misdiagnoses :

  • Chronic Fatigue Syndrome
  • Myalgic Encephalomyelitis
  • Multiple Sclerosis
  • Epilepsy/Seizure Disorder
  • Sarcoidosis
  • Sjogren’s syndrome
  • Fibromyalgia
  • Lupus
  • Rheumatoid Arthritis
  • Scleroderma
  • Asthma
  • COPD
  • Chronic Sinusitis
  • Chronic Bronchitis
  • Dysautonomia
  • Autism
  • Parkinson’s
  • Mental Illness
  • Alzheimer’s
  • Chronic Lyme Disease

Symptoms of Mycotoxicosis:

  • Headaches, migraines, brain lesions
  • Chronic fatigue, exhaustion
  • Irritable bowel syndrome, nausea, vomiting, diarrhea, constipation, sharp abdominal pains, stomach lesions
  • Joint and muscle stiffness, pain and weakness
  • Cognitive dysfunction (progressive brain fog); memory loss, slurred speech, confusion, dementia
  • Balance problems, dizziness, vertigo
  • Ringing in ears, loss of hearing (aspergillus niger)
  • Chronic allergies, congestion, sneezing, sinusitis
  • Asthma, wheezing, shortness in breath, coughing, chronic bronchitis
  • Heart palpitations, irregular heart beat, tachycardia, heart attack
  • Weight loss or weight gain (usually sudden and severe)
  • Multiple food allergies/leaky gut syndrome/altered immunity
  • Thyroid irregularities, sometimes leading to complete dysfunction; adrenal problems
  • Bladder, liver, spleen, and/or kidney pain and problems (infections, disease and failure)
  • Low grade fevers
  • Enlarged, and/or painful lymph nodes
  • Reproductive system complications; irregular menstrual cycles, miscarriage, infertility
  • Anxiety, depression
  • Behavioral issues; mood disorder, irritability, aggression, OCD, bipolar, addiction
  • Rashes and/or hives, bruising/scarring easily, bloody lesions all over the skin
  • Anemia, leukopenia, neutropenia, frequent infections
  • Numbness, paresthesia, Bell’s palsy
  • Muscle spasms, fasciculations, tremors, inadvertent facial movements
  • Extreme blood pressure, cholesterol, or triglycerides irregularities
  • Autonomic nervous system dysfunction (Dysautonomia); Postural Orthostatic Tachycardia Syndrome (POTS)Neurocardiogenic Syncope (NCS)Multiple System Atrophy (MSA)
  • Vision problems (floaters, auras, blurred vision, blindness)
  • Night sweats, head sweats, profuse sweating, excessive salvia
  • Hallucinations
  • Burning in the throat and lungs (similar to acid reflux and often misdiagnosed as such)
  • Hypersensitivity pneumonitis
  • Intermittent face flushing; called the Mylar Flush (neurological)
  • Large boils on neck
  • Burning after urination, frequent urination, dark urine
  • Insensitivity to heat and alcohol
  • Nose bleeds (stachybotrys)
  • Coughing up blood, black looking debris
  • Difficulty swallowing, choking, spitting up (vomiting)
  • Hypersensitivity (highly sensitive to smells, sounds, light, and touch)
  • Multiple Chemical Sensitivity
  • Hair loss, premature graying of hair
  • Seizures
  • Cancer
  • Anaphylaxis upon re-exposure to mycotoxin producing molds
  • Death

Permanent problems resulting from mycotoxicosis after treatment:

  • Balance
  • Short term memory
  • Hearing
  • Sight

Lab tests for Mycotoxicosis/Diagnostics: 

Have an environmental physician or toxicologist order one or more of these tests in to rule out mycotoxicosis. There are more test available these are just the ones which are regularly ordered. You can ask your general practitioner to test you for mycotoxicosis, but keep in mind many are unfamiliar with biotoxin illnesses and other environmental related diseases.

If you test positive you need to get on a customized treatment plan as soon as possible.

Mycotoxicosis Blood Tests an Urinalysis: 

Mycotoxin panel, c3a and c4a, T1-T2 panels, cyrex autoimmune panel, candida panel and more.

Mycotoxin Testing Labs:
Real Time Lab
EHAF LABS
Mycotoxin Testing Lab

*Keep in mind that it is common to produce false negatives in urinalysis mycotoxin, especially for short exposure periods. If someone does indeed have mycotoxicosis, sauna, or some form of heat depuration just prior to testing can draw out some of the mycotoxins which should then show up on the panel.

Indoor Mold Testing:

You may search for ‘ERMI testing’ to order a test kit for your home or workplace.

Mycometrics – (Doctor recommended.) I’ve used this company a couple times, and tell anyone who wants to test their home to go through them.

IMPORTANT: Make sure the company is USEPA licensed, or accredited. Keep in mind that the cheap mold tests sold in stores such as home depot, etc. are simply not accurate indicators of relative mold index. Your health and your life may depend on this, so spend the extra money on reliable testing.

Mold Cleanup & Remediation:

NEVER USE BLEACH TO CLEAN MOLD! The chemicals in bleach will fuel the toxicity of the mycotoxins, causing more problems in health such as bleeding lungs. This is a HUGE no-no for those with mycotoxicosis, and also for those who are unaffected by mold exposure. Instead use safe, natural products (like tea tree oil, etc.) keeping in mind that it’s not possible to remove toxic mold from natural surfaces such as wood and the alike.

There are many professional mold remediation services out there that will send a team to clean your home from floor to ceiling. If you notice the people who come to decontaminate your home are not wearing full protective gear, or at least masks, then proceed with caution!

Videos On Mycotoxicosis & Mold Exposure:

Dr. Robert Crago On The Effects of Mold/Chemical Exposure on the Brain


Sources:

American Medical Labs
Mold Toxicity Killing Americans Slowly
MOLD: The War Within
American Air and Water
Toxic Mold Awareness & Survivors Page