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.
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.
Spoonie Chronicles 