A Mystery Illness That Changed My Life
By Orsi Crawford
My name is Orsi Crawford, and here's my brief journey of a mystery illness that has changed my life. Honestly, I cannot put a date on when this all started.
I've always considered myself a "healthy" person, but looking back, I was probably the healthiest sick person around.
What do I mean by that?
I'd always led a healthy lifestyle full of nutritious foods, exercise, yoga, travel, and love for my family and friends. But underneath it all, I had always battled ailments. I'd spent my 20s in and out of doctors offices and healers for repeated UTIs and digestive issues. The conventional solution for these was always repeated antibiotic treatments. I had been on virtually all antibiotics during this decade of my life, not knowing the negative effects this can have on one's gut microbiome and immune system.
As I was getting my body ready for my 1st pregnancy, my doctor at the time was running blood work, and I was told I had a low white blood cell count. This ended up being chronic, and I went through my first and second pregnancy not making anything much of it. I had seen an immunologist and hematologist, and they stated that this was "fine" and that I should have nothing to worry about. It could be genetic. I just had to keep an eye on it for changes. And I trusted what all these doctors said.
Fast forward a few years, and more and more symptoms started showing, adding up to some 40+ symptoms in total. These included fatigue, brain fog, joint pain, muscle pain, thyroid dysfunction, headaches, eye pain, itchy skin, rashes, reoccurring UTIs, interstitial cystitis, tinnitus, heart palpitations, panic attacks, severe anxiety, weight loss, neuropathy . . . to mention a few.
Most doctors discarded me as having postpartum issues—that all these could have resulted from childbirth, hormonal shifts, and mental issues. Yes, mental issues.
I was referred to a shrink, and I was sent home with Ativan. My constant digestive issues also continued and started to worsen. I developed severe acid reflux and heartburn. I had a few upper GIs and a colonoscopy to rule out inflammatory bowel disease. Again, my diagnosis was IBS (Irritable Bowel Syndrome) and GERD (Gastro Esophageal Reflux Disease). I was sent home with the drug Belladonna (for IBS) and double prescription strength Prilosec (for GERD).
I was also told by the gastroenterologist that GERD is like diabetes, incurable. I would have it for life, therefore I had to take his medication long term. I was always an anti-meds kind of girl and always resorted to natural cures, such as herbs, essential oils, diet, acupuncture, and other natural therapies; but after having tried these and not seeing improvements of my symptoms, I reached for these meds out of desperation. Needless to say, I experienced a whole line up of side effects from these medications, which just added to my misery of having all the other symptoms. I was convinced I was suffering from a mystery autoimmune disease, infection—even cancer had crossed my mind.
Then came the year 2012. I had a slow deterioration of my voice. It started out similar to laryngitis—when you get a virus and you loose your voice for a few days, but then your voice returns back to normal. For me, weeks had gone by, and I literally sounded like a broken record. I couldn't carry on conversations for more than 5–10 minutes without pain and even had episodes of feeling like I was choking on foods.
It was time to go see an ENT. After scoping my throat, he told me that my voice issue could be due to acid reflux, and he sent me home with Zantac. After Zantac did nothing and my symptoms never improved, he suggested I see a vocal cord specialist at UCLA, who was the best in LA—I'd be in good hands. After going through another painful scope, the doctor determined that my left vocal cord was paralyzed. He told me that I would have to wait six months or so to see if the vocal cord would recover on its own.
I asked all those normal questions patients ask: Why do I have this? What causes this condition?
He ruled out spasmodic dysphonia, a vocal cord disorder, and said that I belonged in the category of 1/3 of his patients of "unknown cause." I patiently waited a month and hoped and prayed that my vocal cord would recover.
I visited naturopaths, chiropractors, acupuncturists, and energy healers and took healing herbs, went on a very strict acid-reflux diet protocol—still no change in my vocal cord condition. I ran back to my doctor's office at UCLA asking for help, because I could hardly communicate with anyone.
He told me that the only treatments for this condition were 3 things: hyaluronic acid injections directly into the damaged cord, surgery, and regular voice and speech therapy.
I tried voice and speech therapy first without any success. Then came the brutal injections directly through the Adam's Apple into my vocal cord (no anesthesia). The idea of these injections is to boost or medialize the cord so that it touches the right cord upon forming a sound. These injections were given to me every 6 months or so, because they'd wear off.
Then came the announcement from my doctor: "You cannot have any more injections because your cords could hemorrhage. Scar tissue can build up. The injections were never a permanent solution."
Again, out of desperation, I resorted to the next step: surgery—Thyroplasty Type I. Basically they would cut my neck open under twilight anesthesia, wake me up, and insert a tiny Gortex type implant next to my cord to permanently medialize it. They would test my voice during the surgery, which meant that I would have to try and make sounds.
The procedure works in 95% of cases, but 5% of the patients can permanently loose their voice. I risked the 5%, because I was desperate for my voice back.
I had the surgery in December of 2015. I lost my voice for 2 weeks while my cord and surrounding laryngeal tissue healed. As I slowly regained my voice (thankfully, I wasn't in that 5%!)
I started thinking to myself, this is NOT normal and shouldn't happen to a healthy person.
I was determined to find the root cause of this rare condition. Thankfully, a dear friend of mine suggested I see her doctor, an integrative physician in Los Angeles. He had a long wait list, but I got in after 3 months. After our thirty minute detailed discussion about my mystery ailments, he told me he would test me for Lyme Disease.
I thought to myself, oh wow, that's it? After years of searching for a diagnosis, going from doctor to doctor, nobody ever brought up Lyme disease, and this doc knows what this could be?
I started the testing process (which is a whole other story that I will talk about in future posts) and sure enough, I tested positive for Lyme and Co-Infections, such as Babesia, Bartonella, Rickettsia, HHV6, and others.
I then had my a-ha moment when I remembered being bitten by a tick while horseback riding in Connecticut in 2007.
But wait . . . I didn't get sick from the bite. I didn't have a the typical Lyme disease bullseye rash. I didn't get a fever and flu-like symptoms. So how could I have Lyme disease?
I remember people telling me back then that I didn't have to worry; you didn't have the classic symptoms, therefore you can't have Lyme disease. Wrong! As I later found out from my own research, only about 30% of people get the classic Lyme disease symptoms—and most don't even know they got bit by a tick.
Other research suggests that different vectors (not just ticks) are carriers of these infections—mosquitos, fleas, mites, horse flies, and spiders. So, I could have had this illness for much, much longer as a result of many other insect bites.
Ironically, it was a bittersweet relief to hear those two words: Lyme disease.
Because my affliction wasn't acute—meaning my tick bite had happened 9 years prior, I was categorized as having Chronic Lyme disease—which by the way, is not recognized as an illness by the CDC.
After going through a period of shock, I told myself: I got this. I can conquer this, it's my only option to get back to my normally functioning self: mother, wife, daughter, sister, and friend.
It's a way better option than slowly dying of a mystery illness—which I had thought was happening to me.
This whole journey has not only been a transformation of a sick physical body but also a transformation of spirit and soul. I realized how much I had covered up to the outside world, to my loved ones, and how much I didn't let myself be vulnerable. I had cried many times alone. It can be a very lonely and isolating disease. It is also a disease that requires a lot of research on behalf of the patient and a lot of patience to try different treatment modalities and protocols.
Lyme disease is an individual illness that can affect any organ system in the body, causing hundreds of different symptoms. They call it "The Great Imitator" for a reason; it can mimic many other illnesses, including Fibromyalgia, MS, ALS, lupus, Hashimotos, Crohns, heart disease, depression, bipolar disorder, mold illness, cancer, etc. Sadly, most conventional practitioners don't ever look at Lyme as the root cause of these illnesses, nor do they test more frequently when people experience mystery symptoms.
One really has to be their own self-advocate to never give up searching for answers and the right diagnosis.
In closing, my doctor ended up treating me holistically without antibiotics due to my destroyed gut microbiome and dysfunction. My healing took 2–3 years of vigorous IV treatments, detox protocols, anti-parasitic treatments, energy medicine, traditional Chinese Medicine, dental work, herbal antimicrobials, essential oils, loads of supplements, and a very strict diet protocol.
Our understanding of Lyme disease is evolving, and it is now clear that the simple-minded approach to infectious disease that doctors were all taught in medical school just does not work for Lyme disease. Dealing with any chronic disease—including chronic Lyme—demands an approach that heals, strengthens, and restores the patient. My own ups and downs of this journey inspired me to enroll in school again to become a nutritional consultant and health coach. My goal is to bring awareness to this illness and empower others to advocate for themselves, to seek out the right help, and to help them navigate their health back to balance.
If you have questions, please reach out to me here on Flapper Press and follow me on Instagram @the.holistic.circle.
Read Elizabeth Gracen's interview with Orsi Crawford here.