Tuesday, January 25, 2011

Timeline of Symptoms (Historical)

I was only this month diagnosed with chronic Lyme and able to connect it to my history of chronic illness, which I will detail in chronological order below.

There were many stomach aches to be experienced in my childhood. Since we traveled overseas often--spending days or weeks in places like Syria, Morocco, Germany, Italy, Greece, Turkey, Mexico, and Peru--I picked up the "traveler's bug" during every trip. Bouts of vomiting, fevers, chills, weakness, diarrhea, headaches and overall malaise occupied these trips. Maybe we weren't as sanitary as we should have been, for I ate ice cream off street carts and tacos off trucks, rode and pet camels and donkeys, drank water from fountains that flowed through industrial third-world cities, used toilets that were holes in the ground with no sinks for hand-washing....... you get the idea. 

Sure, I was lucky to have experiences that very few do. I'm grateful for the fantastic memories I made during the travels, the cultural and educational experiences, and the overall privilege bestowed upon me, but I don't think I'd be exaggerating to say that some of the illnesses left me with a case of PTSD. (However, since PTSD is psychological and neurological, I plan to discuss that at more depth later.) 

A large part of me thinks I'm infected with parasites from these travels decades ago, or what I've come to learn are termed "co-infections" when one has chronic Lyme. Since I have never been tested for parasites, I plan to add this to my priority list: Get tested for parasitic infections. (Update--2012: I'm a host to six types of parasites.)

Back to the topic at hand. My last blog entry left off with the early demise of my health starting around 1st or 2nd grade.
Nausea. Upset stomach. Crying spells. Cravings for sugar and simple starches. No appetite for healthy foods. An underweight, malnourished body.

I would have forgotten just how weak and frail my state was in elementary school, if it weren't for the memories of P.E. class. Thank you, P.E., for reminding me how much I hated you! Since my endurance never improved (even through high school), and since I almost always came in last--even behind the obese kids--I started to see the P.E. teachers as evil-doers who just shook their heads and fists at me. To them, I was just be lazy and unmotivated... they couldn't possibly fathom that making me run for a mile was the most painful form of torture my childlike brain could imagine, leaving me sore and sick for days afterwards.

When my stomach aches didn't go away with time, a doctor finally suggested, at the start of my 5th grade year, that I have a scope performed on my stomach. When the results showed I had acid reflux, I started a daily regimen of acid reflux medications that would only make me sicker. The stomach aches persisted and worsened, to the point at which I was taking Reglan (an anti-emetic) as often as I could. Rarely did I actually vomit, unless we were traveling, but mostly I worried, panicked, that I might vomit.

One morning during mass at my 5th grade Christian school, I experienced my first panic attack. Seated mid-row, tucked tightly in from both sides, I was suddenly gripped with a simultaneous sense of terror and nausea. There was no time for thinking--every ounce of me just had to get out of that pew and to a rest room immediately! My heart was racing so fast I thought it would explode. I ran like the wind all the way to the rest room, sat on the toilet, cried, and... didn't get sick. No vomiting, no gastrointestinal symptoms. Just a sense of defeat and... relief.

I wouldn't have another panic attack for six more years, but they'd be back with a vengeance.

The stomach aches dragged on and on, coming and going at random times like the unpredictability of Texas storms. And then came another storm--or at least it bears quite an uncanny resemblance to a downpour: In 7th grade, I experienced a nasal "allergy" that has never stopped. In case you missed the weight of that statement, allow me to rephrase it: In 7th grade, my sinuses flared up, started to overproduce mucus, and I signed away my life to the makers of Kleenex. I haven't gone anywhere since then without a stash of tissues on my body. Not a day has passed that I haven't woken with the need to blow my nose and fallen asleep with a tissue in my hand.

Allergy testing showed I was allergic to a host of common pollutants that are inescapable lest you live in a cave. My life became prescription allergy pills, nasal sprays, and weekly allergy shots. But in spite of all the medication, my allergies continued to worsen.

8th grade was particularly brutal. My classmates were vicious, cruel, tormenting me as often as they could with comments about my nose-blowing. More tolerant students were simply inquisitive, wanting to know if I'd seen a doctor and suggesting a certain allergy remedy. Every sniffle I made in class filled me with embarrassment and shame. 

By ninth grade, I still hadn't started my first period, and still weighed about 80 pounds.

After two years on allergy shots and pills with no improvement (not to mention hypo-allergenic bed casing and carpet cleaner), my mother took me to an Ear/Nose/Throat doctor, who performed a CT-scan which showed sinusitis and suggested sinus surgery as the solution. Ecstatic when he told me I would experience a 75% improvement in my sinus symptoms, I felt a huge weight lifted off me. The summer between 9th and 10th grade (which is when, incidentally, I finally hit puberty), I had endoscopic sinus surgery.

Except for a near-fatal post-op incident in which I blew open fresh stitches in my sinuses, causing a gush of blood to pour out my sinuses and mouth, and ending with my vomiting clots of blood and falling unconscious on the hospital floor, the surgery really didn't do anything for me. Once I healed from it, I blew my nose just as often as before. And so ended junior high school.

No doctor ever suggested I be tested for chronic viruses, bacterial infections, parasites, or immune system disorders, all of which can cause respiratory problems, excessive phlegm production and allergies; the fact that allergists and sinus doctors don't test for these things when a when patients show no improvement or response to treatment is more than baffling--it is highly disturbing.

I started high school with a big, bad attitude and a distrust of everyone. Refusing to smile for cameras, pictures from that era paint me to be as distraught as I truly felt inside. I wasn't a cool kid in school and didn't have a boyfriend, eventually gravitating toward the darker, quieter and more artistically expressive crowd of students. Forced by my mother into therapy, I found myself communicating with someone who seemed more patronizing than professional and clueless about how it felt to be me. Therapy didn't last long. Poetry became a huge escape for me, which later in high school turned into lyrics and songwriting.

Throughout high school, I experienced a host of maladies: PMS brought about severe cramps that rendered me in a fetal position, and sleep evaded me at night. I constantly craved sugar, and my mind would never shut off. Anxiety started to grip my every moment. The anxiety led to OCD-type behaviors, which included constantly chewing the insides of my cheeks and lips until they bled, picking at pimples on my back and upper arms, picking at split ends on my hair, and feeling the need to be writing or drawing to keep my hands from going idle. At night, I would twirl my toes in bed and couldn't escape the feeling of something crawling under my skin.

At 16, I was stricken with a phobia that would absolutely change my life forever. When I tell you I developed "emetophobia", a fear of vomiting in public, you might blow it off as trivial. However, emetophobia led me to start to see all food as toxic poison that would certainly make me sick and vulnerable, revealing how deeply, deeply insecure I was. I would visualize food as vomit and force myself to swallow my meals just to keep myself alive. Contrary to what many people thought, I didn't actually want to die, and I was never anorexic or bulimic (despite numerous accusations that I was); I just feared that everything I ate would make me vomit, and it became an obsession for several years that during that time never escaped me for a moment.

Panic attacks started to take place any time I felt a sense of being trapped somewhere I might throw up without having time to escape to perform the act in privacy. Although I never threw up, I absolutely had to sit in aisle seats or near doorways, and rode elevators and buses in a state of full-blown terror and drenched in sweat. Please, please don't throw up, I would beg myself.

Still not knowing I had emetophobia (I wouldn't learn the name for this until college), and completely unaware that it was a psychological disorder, I had two more scopes performed on my stomach, in addition to a barium x-ray and a gastroparesis test (to detect slow digestion, a disorder which can cause food to putrify in the stomach). With every stomach test that came back normal, I sunk into a deeper depression.

Also during high school, I started having sharp, stabbing chest pains that were random in nature, occurring separately from anxiety attacks or physical exertion. Off I went to a cardiologist, who performed a stress test, only to show--shockingly (not!)--that my heart was fine.

Between ages 16 and 18, I traveled to France, Syria, Lebanon, Peru, Argentina, Mexico, and Italy, and nearly killed myself from the stress. Furthermore, being so malnourished and chronically tired and weak, I was belittled by family/companions for struggling to trek through Macchu Picchu, climb the Sacre Coure steps, or hike the Cinque Terre trail. It's not to say I didn't try, for I attempted and barely completed each of the above, but I paid the physical and emotional price.

On one particular transatlantic flight between Paris and the U.S., I remember when the "fasten seat belt" light came on, I was convinced that, between my fear of heights/flying and my fear of vomiting in public, I would have a heart attack. I locked myself in the airplane bathroom and proceeded to squeeze open every pore and hair follicle on my body, including my face. An hour later, I emerged from the bathroom, exhausted, embarrassed, my face bleeding and broken out, and cried in my seat until we landed.

Salvation from this insanity arrived in the form of Celexa freshman year in college. (Celexa would soon evolve to Paxil, then to Lexapro and eventually Cymbalta.) A university psychiatrist helped me realize that my neurosis was an imbalance of brain chemicals, and this presciption would help to keep seratonin active longer in my brain. While the medications do not actually add seratonin or increase brain seratonin levels, they do improve the communication of neurotransmitters and make the seratonin more active.

Blood tests recently performed by my doctor show that my brain seratonin levels are so low they are below the minimum reading that can be detected in the lab, which is less than half the minimum spec for healthy adults. This is likely also caused by Lyme. I plan to devote an entire upcoming entry alone on neurological lyme, a.k.a. neuroborreliosis, but in short: when Lyme reaches a later stage and gets in the spinal fluid, it causes the brain to literally swell up, fill with lesions, misfire synapses, and cause symptoms like vicious anxiety attacks and obsessive compulsions.

In my 20s, my emetophobia has taken a back-burner to the chronic fatigue (CFS) and respiratory issues. I haven't really experienced any new symptoms, just a composite of everything from my childhood, compounded by an immune system that's very, very slow to recover from illness. For instance, what start as simple colds become sinusitis or bronchitis that last several months, requiring steroids and antibiotics to cure. If I sleep under eight hours, I almost undoubtedly become ill.

More than that, the fatigue and weakness are the most intrusive of the active life I desire. Already feeling the effects of limited mobility, such as an inability to stand on my two feet for more than five minutes, I fear what this means for my future. But I'm hopeful that treatment for Lyme and Hashimoto's will provide real relief in this department, with a major goal being development of physical endurance. People just don't understand how hard it is to "just exercise more" when you're plagued with Lyme, diseased thyroid, candida, low blood cells (no immunity), and chronic infections like EBV and pneumonia. Then again, until two weeks ago, nobody (including me) knew I had any of these diseases, so it was easy to assume I could just exercise myself strong. Trust me, I've tried, even with the help of a personal trainer.

I hate to say it (well, not really), but doctors have been pretty much useless--except for my current Lyme doctor. Every primary doctor, immunologist, disease specialist, and more have dismissed me as a hypochondriac the minute I start to rattle off my symptoms. Even the three endocrinologists I've seen as an adult haven't tested my thyroid antibodies to confirm Hashimoto's. In fact, one endocrinologist noted that I had gone from a borderline hypothyroid state to a fully hyperthyroid state and back again, and didn't suggest anything was wrong, noting that my thyroid was just "self-regulating". Amazing!

The worst doctors were the ones that told me to my face I was lying, making it all up. Then there are the friends, teachers, boyfriends and others who have said far worse--but I reserve the "relationship" blog entry for a future date. (I also look forward to writing about my strange, eccentric and socially-isolating behaviors.)

It's incredibly relieving to know legitimate diseases are responsible for 23 years of chronic illness. Most interesting is the allegation by my Lyme doctor that chronic Lyme may have actually caused my Hashimoto's and candida. While I'm certainly angry that nobody detected any of these illnesses in the myriad tests performed on me, the relief of knowing, well, trumps the anger. I'm ready to start treatment (and I'm one week from starting! Can't start till the fifth of Feb). I'm ready to be well! What a novel idea!

Once I start treatment, I'll document my experience undergoing treatment of antibiotics, anti-virals, anti-fungals, herbs and immune boosting supplements. I've done my homework and I know to expect a Herx reaction, so I'm going to turn here for support when the Herxing gets really bad :-)

Thanks everybody for reading my blog, Lyme sufferers and non-Lyme sufferers alike. May the healing begin for the ill, and may the knowledge begin for the uninformed........


  1. Leila, my heart goes out to you to have suffered so much! Wow! What's amazing to me is how much resilience, perseverance and passion you still seem to have for life.

    I'm rooting for you and writing to you privately.


  2. Wow......... You have been through SO much. I can't even begin to imagine how hard things have been. You are clearly a very strong individual!!!

    You should get tested for mycoplasma. I have it and chlamydia pneumoniae and I attribute them to all my chest infections and sinus infections. My chest has cleared significantly since starting treatment 5 months ago.

    It's interesting that you had such bad stomach issues and panic attacks. My therapist told me that there are receptors for the brain in the stomach, so having stomach issues can cause panic attacks...

    I'm so happy you are finally getting some answers.

    I look forward to getting to know you more : )

  3. you're story is similar to mine. I too suffered from terrible anxiety, ocd, and now CFS. I am waiting for my lyme test results....