UPDATE: I am finally getting treatment that is helping me at Natural Medicine and Detox in Phoenix, AZ.

Hi, my name is Dana and I’m currently desperately trying to recover from a disease medically known as CIRS (Chronic Inflammatory Response Syndrome). This is similar to Lyme Disease, yet much less known and perhaps even more critical.

My hope in sharing my story is to spread awareness of Biotoxin Illness (CIRS) and prevent others from unnecessary suffering. I believe the more people who know and talk about CIRS the better. Once I recover, I will continue sharing my story and would like to get this disease into the mainstream media to make funding available for all CIRS warriors.

The photos shown above are from when I was active and healthy before this painful and debilitating illness robbed me of my vitality. The photo in the middle is the current reality of CIRS. For years I worked as a safety swimmer and coast guard licensed boat captain, often three charters daily. I took people swimming with wild dolphins, whales and other sea life with an emphasis on respect for their natural ocean habitat. I had an underwater photography business on the side, was considered a dolphin whisperer, had been interviewed multiple times for documentaries, and was constantly active. I spent my free time hiking, traveling across the Pacific for months at a time, adventuring, free diving with a wide variety of undersea life (multiple species of wild whales, dolphins, sharks, and manta rays) and surfing throughout the islands. As an ambassador for “Women For Whales”, I organized and hosted events raising money for their non-profit organization as well as Ric O’Barry’s, “The Dolphin Project.” I also designed high-end handmade mermaid tails to swim in as a method to connect women & children with the magnificent world of the sea.

My story began around 2011 while living on the Big Island of Hawaii (known for its active volcano). I started spending less time in the ocean and more time inside the house that had been my residence since around 2005. I developed a chronic runny nose that lasted for the next two years and extreme fatigue after a bad reaction to antibiotics. Looking back, I recall that the home did have a small leak when it rained and there was a substance outside on the roof which most likely was black mold. At the time, it never occurred to me that this might be mold or that a small leak would create any type of illness. I remember feeling as though there was something in the home making me sick. I couldn’t see anything that made sense and attributed my sinus trouble and fatigue to the “vog” (volcanic organic gas; a combination of sulfur dioxide gas, water vapor, and natural dust particles that contain several different metals). I then had a disconcerting reaction to a tattoo where my body seemed to be trying to expel the ink. When the tattoo artist tried to touch up the ink after it healed there was an odd smell of flesh and he refused to continue. He had never heard of any such symptoms occurring from a tattoo. I had one other strange occurrence of my back being touched and experiencing an intense electric shock throughout my entire spine and ribcage. That unusual sensation went away and I thought no more of it…until now.

I had grown the mermaid side of my business into retreats and coaching to help women tap into their essential purpose and live their dreams. In the Spring of 2014, I moved back to Arizona. I wanted to grow my company in a new direction by pursuing a speaking career and publishing a book. I saw a need to share lessons from the sea that I had learned and the importance of removing toxic stress by following one’s heart to create a greater impact in the world.

I planned to visit with family for a couple of months, then travel to organize and host workshops. I organized and hosted two events before my father found out he had his first brain tumor. I stayed in Arizona to care for him after his surgery and also cared for my mother during her back surgery. Shortly after my father’s first surgery, my parents had a very complicated and stressful divorce followed by family estrangement. Over the following nine years, my father had seven brain tumor surgeries, multiple radiation procedures (cyber-knife and Zapp), two brain infections (from the surgeries where they removed the top of his skull), two grand mal seizures, and various other seizure-related incidents. Life became a pressure-packed state of survival.

In 2015, I had such intensely painful menstruation cycles that led to surgery for uterine fibroids. I now know that CIRS causes a variety of problems with hormone levels where fibroids become quite common for women. I moved to San Diego, California from 2015-2016 and attempted to keep my business afloat by doing coaching calls and starting an inspirational podcast with another colleague. I drove back to Arizona each month to check on my father and mother. I finally had to surrender to my physical incapacities as I had no additional energy to give to a business. I suspended day-to-day operations with the wish that one day soon I would relaunch the company. For sustenance, I took on a caregiving assignment at a care home. At that time I had been staying with friends, at AirB&B’s, and even living in my vehicle for a couple of weeks. It was during this time that my left ear became extremely painful and I was nauseous just from the simple act of walking, as if I was seasick. After multiple doctors and an ENT (Ear, Nose, Throat) Specialist, I was told that I had TMJ (Temporomandibular Joints), of which I had never before had any problems with my teeth or jaw. I have since seen three TMJ specialists and have gone through Splint Therapy (hard mouthpieces that are thousands of dollars to have made and need to be worn all day even while eating to realign the jaw). I went through three different day splints and one permanent night splint that needed replacing twice due to continued pain. Around this time I also noticed I was gaining weight at an unusual rate. It later proved to be ten pounds a year. I now know drastic weight gain is typical with chronic mold exposure.

This began my long excursion of being passed along from doctor-to-doctor and was only the beginning of my physical pain. I began having chronic headaches, back and shoulder pain, and my arms, hands and feet would become numb on a regular basis (all common symptoms of CIRS). I experienced horrible facial pain, known medically as myofascial pain. I don’t take any mind-altering substances and therefore didn’t take anything for the pain. I received steroid injections and prolotherapy (saline injections) in the jaw. One (passed along doctor) actually told me that my nose was too narrow and I needed surgery to open my nostrils which would “surely” cure all of my pain (including my head, face, back, arms, hands and feet). Since I had never experienced any of these issues before this current parade of doctors (and being only 36 years old), I realized this was not the correct course of action for me…but what course should I pursue?

In 2016, the day after I temporarily moved back to Arizona, my father had another brain operation and post-surgery infection (where they removed the top of his skull again). I lived close enough to be available for his ongoing emergencies and also helped my mother with a couple of falls she experienced. During this time, I took a job at a local tea room. Shortly thereafter I began having chronic migraines and my physical body pain increased dramatically. I found the most comfortable orthopedic shoes to wear and tried working shorter shifts, but nothing helped. My physical condition facilitated giving notice. Where I was residing during this time, the guest bathtub (used for epsom salt pain-relief) stopped working and a partial remodel was initiated by the owner. Contractors began repairs of the two bathroom showers and found the piping was corroded. Having the pipes opened could have been a source of mold circulating throughout the home. 

From the beginning of 2017-2019, my pain turned into what I call my “torture chamber” years. I contemplated defeat and closed my company due to lack of energy necessary to keep myself and my business afloat. I was unable to sit or stand longer than fifteen minutes without getting a full flare-up and extreme migraine. It felt as though I was being tortured by someone behind me rolling up the tendons at the back of my ribcage like one would wind up a hose. It was extremely difficult to breathe and the pain was debilitating. I spent a large amount of those years laying on ice packs. My whole body seemed to stiffen much like concrete and to my dismay, I could not find a reasonable cause. My entire life changed. From being a healthy active woman and successful entrepreneur, I no longer could exercise, even walking around the block exhausted me. It was as if I was walking in slow motion through molasses. I often couldn’t make conversation and felt as though I was shrouded in a heavy fog. I became significantly temperature resistant to heat (which I once loved), and particular scents became intolerable, along with constrictive clothing, especially around my rib cage. Trying to get some pain relief, I cut my hair short as the simple weight of long hair induced migraines. I began having electric shock sensations and “ice-pick” pain in my left ribs. I now know that this is a primary indicator of CIRS. I drink one to two gallons of water daily, yet still feel dehydrated and developed unusual problems with my bladder. I began having sensitivity to sounds along with OCD (Obsessive Compulsive Disorder) tendencies. I had problems during conversations with memory recall of common words that baffled me. Chronic fatigue took over and even small daily activities were too much to bear. Further, a mass was growing on my left abdomen by my ribs and I would often get pain there. I had multiple MRI (Magnetic Resonance Imaging) and CT (Computed Tomography) scans which all came back “normal”, but my intuition sensed that there was something very wrong. I often awakened covered head-to-toe in bruises, yet had not bumped into anything that would cause this to happen. Being accustomed to therapeutic massage for many years, I was alarmed by intense pain in my ribcage and trouble breathing after having one so thereafter I could no longer receive them. By the time I was in my late thirties, I felt as though I was in my late nineties, much like a woman I once cared for. I couldn’t understand what was happening to me. Looking in the mirror I had aged drastically in such a short amount of time.

I wrote out a full two-page (front and back) list of all my symptoms and took it to my PCP (Primary Care Practitioner) in 2017. On the way to this doctor’s office, I found myself disoriented and lost although I had been there many times prior. I pulled over into a parking lot and called them in tears, confused as to why I couldn’t find the turnoff. Unfortunately, mainstream medical doctors are not taught about CIRS or its devastating neurological effects and I was left to think that there was something wrong with my mind. Once I finally made it to the exam appointment, the doctor scheduled thorough lab tests that all came back as “normal” and said my symptoms seemed to all be due to stress. She recommended that I take anti-depressants. I mentioned how that didn’t seem to make any sense. I had gone through many stressful times before and nothing like this had ever happened. I remember often thinking that I had never known anyone who had experienced anything remotely similar to what I was physically experiencing, even in times of the worst stress and vicissitudes. I told her that I certainly had grief and sadness with the intense pain and all my debilitating symptoms, but I sometimes would have one or two days out of the month where the pain wasn’t as severe. In those times, I could participate in life to an extent, and my mood drastically lifted. She suggested the possibility that I had fibromyalgia. She passed me along to a pain clinic. Due to my not taking mind-altering substances, I turned down painkillers as I wanted to find the root of my issues, not just numb the symptoms. I went into this clinic as often as possible for the maximum dose of steroid injections (in my trapezius, shoulders and occipitals). I tried a back brace and physical therapy, still alternating between heat and ice packs. I was then referred to an acupuncturist whom I went to eleven times (because l was told “a few times is not enough to see results, a whole series is needed”). At this point, I finally conceded that I was not getting any better and my migraines were worsening. It was recommended that I try TENS (Transcutaneous Electrical Nerve Stimulation) electrotherapy which did not help my pain and the migraines actually increased. I was then encouraged to try The Medical Medium’s celery juicing plan. I juiced 24-32 ounces of organic celery on an empty stomach every morning for two years despite the pain of standing. I tried low-impact exercise (which often induced flare-ups) and cryotherapy to help with the pain. Prior to exercising and often while driving I felt waves of nausea where I thought I would vomit at any moment. I purchased a new mattress and pillows thinking that might correct the situation. The pain, migraines and night sweats unfortunately continued.

I was further diagnosed as having Fibromyalgia, Chronic Fatigue, Myofascial Syndrome, Occipital Neuralgia and TMJ. One doctor said my symptoms began with TMJ, another said they began with Myofascial Syndrome. No matter which one began the progression, it all seemed hopeless. I went back to my PCP for pain in my left ribs and she suggested that I had some type of a flared-rib or scoliosis – probably from birth. This seemed rather ludicrous to me as my whole life I had spent active in dance, yoga, swimming, surfing, meditation, hiking, and Pilates. None of this seemed to make sense, especially in how doctors continued to pass over the concerns that I was explaining to them. I even contacted a nutritionist who seemed astonished at how I consumed the lowest calories possible to stay healthy yet my body still resisted weight loss (which as stated before, I now know to be a very common indicator of CIRS). I continued on my long journey of being passed around from doctor-to-doctor and treatment-to-treatment and getting nowhere. It was then suggested I contact a neurologist to receive Botox treatment for migraines as well as TMJ, yet my chronic pain persisted. From 2019-2022 I began having digestive problems. Throughout that time I had seven bouts of oral thrush (candida/yeast overgrowth) which I had never experienced in my entire life! My doctor passed me off to another ENT, who told me that it was probably just from stress (again this seemed rather ludicrous!).

How can doctors think any of this is “normal”? I had nausea, stomach pain, a constant feeling of fullness and I no longer could eat certain foods. At this point, I had long given up on sharing my symptoms with anyone (especially “experts”) and began to believe what I had been told; that I was responsible for my health issues due to not handling stress better. Yet, I still had a lingering intuition that something wasn’t “normal.” In 2022 I had a pre-skin cancer procedure done and the nurse had to place a white grounding patch (for cauterizing) on my left ribcage. My entire body jolted on the table several times with electric shocks until she removed it. I asked if there were electric currents in it and she replied that it was simply a white patch with nothing else in it. They never questioned my body’s reaction which I thought rather strange as electric jolts are not something the body produces normally.

A good friend suggested I go to an Integrative Medicine Doctor to find out if I had any food allergies or was harboring heavy metals. At first, I resisted because I had given up on getting well and began to succumb to the idea that I might have to live this way for the rest of my life. I remembered back to that strange tattoo reaction I had while living in Hawaii and thought that I might indeed have heavy metals in me so I decided to try one last doctor. I’m grateful that I did because in describing my symptoms this doctor strongly suggested that I test for mold. I doubted her suggestion as I’d never lived in a home where I could see or smell mold. Regardless, I followed her advice and in August of 2022, the test results came back “negative” for heavy metals (I’ve since learned I need a more sophisticated heavy metal test to find accurate results). However, the test was off-the-charts with multiple high levels of mold mycotoxins!! I was truly shocked. I also had Sibo (Small Intestinal Bacterial Overgrowth), leaky gut, gluten intolerance and candida (all of which are common with CIRS). I’d never in my life had problems with any type of food or digestion! As I have previously stated, I had always been into health and nutrition. I had the home I’d been residing in since 2017 tested for mold which came back showing very high levels. I hired a mold remediation company to perform dry-fogging (which I later learned from a mold “expert” is not the recommended route of action, yet thorough testing and remediation combined can exceed many thousands of dollars). The dry-fog company said the high levels of mold mycotoxins were most likely due to spores circulating in the HVAC system. Later, a plumbing company advised the owner of this home that all the old piping under the house is corroded and needs replacing. I realized that my health was in jeopardy. I had a recent exposure to another water-damaged home with a roof leak and had to sadly say that I can no longer go over to that cherished person’s home. I now have a deeper acceptance of the necessity to care for myself with the seriousness of water-damaged buildings. Facing this illness with continued mycotoxin exposure is overwhelming. 

There is no acknowledgment or funding for CIRS, mold illness or remediation. The incredible fact is that mold can be in homes without anyone seeing or smelling it! Multiple people can live in the same home and only one of them might be affected which causes a vast amount of misunderstanding. “Mold Disease” symptoms can appear similar to those of “Lyme Disease” as well as many other illnesses, leaving CIRS unfortunately misdiagnosed. Throughout my life, I give 100% to all I do and for this to take me down shows how profound of a disability CIRS can become. My experience with CIRS has been horrendous and I’ve heard of even far worse stories. Something needs to change! 

Since finding out that I have CIRS, I have been doing as much research as my health allows. I’m astonished at the lack of awareness or acknowledgment about this illness. I am finally accepting that I’ve been very ill for quite a long time from mycotoxins that have been affecting my brain, (mold mycotoxins have the ability to cross the blood-brain barrier), nervous system, digestive system, and all organs. It causes chronic fatigue, mood swings, OCD, anxiety, smell, sound, texture and heat sensitivity, lung and sinus problems, headaches, excessive thirst, urinary frequency, Lyme Disease symptoms, histamine intolerance, mast cell activation syndrome, rashes, bruising, skin sensitivity, burning sensation on skin, weight gain and weight loss resistance, ice pick pains, tinnitus, night sweats, electric shock sensations, numbness, tingling/neuropathy, debilitating full body pain, problems regulating temperature, low thyroid, irregular hormones, balance issues, word loss, brain fog, memory, cognition and concentration issues, and so much more. (All of the above symptoms are those I’ve experienced). This is a horrifying illness that strips one of so much. I no longer remember what it’s like to feel like a “normal” human, let alone a woman. 

The gaslighting that occurs from doctors, family, friends and society saying that it’s all in the mind is astonishing and certainly detrimental, especially after sharing the medical research and diagnosis with them.

The cost of recovery from CIRS is very expensive. Insurance does not cover CIRS treatment. Doctors who treat CIRS estimate one year as a minimum treatment time, but it can take 3-5 years or even longer for a full recovery. Every person is different in how they are affected by the illness and how long they have been exposed. Each person’s recovery time also varies so there is no set standard.

I have gone through many arduous experiences, yet I have never experienced anything so challenging in my life as this illness or the recovery process. I am grateful to at least know the illness that I’m currently suffering from and encouraged that it is indeed possible to recover. At the same time, it’s also discouraging to know that after all I’ve been through and tried, I’m only at the beginning of a very long process.

The fact that I endured this illness for nearly a decade before finding a doctor who knew enough about the symptoms to actually test and diagnose CIRS is astonishing; especially with the brain power available in this day and age. What I’ve come to understand is that mycotoxins began to form a colony inside of me while living in the Hawaii home, but laid dormant with only minor effects. Having continuous unknown mold exposures caused a collapse in my immune system, thereby activating the gene for CIRS and allowing mycotoxins to take over my body. The recovery process is like attempting to empty a bathtub with the faucet on. Furthermore, being in an environment with current mold exposure is comparable to using a bucket to bail out a leaking boat amidst a rainstorm or trying to soak up the ocean with a sponge, prolonging the process of a viable recovery.

Thank you for taking the time to read my story. I hope you will feel inspired to research more on CIRS and please share to educate others.

UPDATE: I am finally getting treatment that is helping me at Natural Medicine and Detox in Phoenix, AZ.

If you’d like to support my recovery click on the heart ➵

With Love and Grattitude,

       

Photo Credits: Susan Knight Studios, Sarah Lee, Free Dive Photo.

Special Thanks to Bobbie Jo and Eric Carr for their kindness and generous support in helping create this website as a vessel of hope and healing for all.