Finally, my bout with the Poo Flu had abated and I was able to crawl out of bed and walk my dogs again – kind of. About 30 minutes in to every walk I would be doubled over with intense cramping and pain in my belly. Every time I ate I would have crippling stomach pain shortly thereafter. Oddly, any sort of emotional encounters with people would cause the same pains. I thought maybe my two anti-parasitic pills had not fully kicked in. Next, I experienced excruciating pain in my finger joints. The pain was so intense that it would wake me up at night, crying. I could barely clutch a gardening tool. My new Mexican neighbors loved to shake my hand, a kind gesture that would bring me to my knees in pain. In the following months, each day or week saw a new symptom. I had a rash of tiny pink dots on my wrists. The joint pain migrated throughout my body, first affecting the joints which had prior injuries, then traveling to fresh, unsullied joints. Once easy four mile walks with my dogs became a task requiring Herculean effort, requiring a long nap once I returned home. I became incredibly sensitive to light, sound, touch, and smell. Every day I wrapped myself up in hat, sunglasses, long sleeves and pants, I avoided human touch because it would nauseate me, I couldn’t listen to music, and the scent of the horse manure, drifting in from down the street was beyond unbearable. I felt brain becoming fragmented. I could not focus on anything, I didn’t have the attention to read the simplest book, I forgot even the simplest things, like how to speak English. My blood pressure had dropped so low, most days it hovered at or below 90/60, every time I bent over to pick a weed I would become light-headed when I stood. I never actually passed out, but some days, when I regained my equilibrium I could do nothing more than stumble my way to bed. Sleep was a dream of the past. I would fall asleep without much trouble, but I usually awoke at midnight, and again at 3:00 a.m., the ringing in my ears overpowering the sweet, lulling sound of the crashing ocean in the distance. I became an emotional wreck. I was in a constant state of frustration, usually with myself. More than a few times I had violent outbursts. While most episodes were just yelling and throwing things, one particularly horrible outburst ended in a fistfight. More days than not, would find me crawling back into bed, whimpering from the pain that enveloped my entire body, floored by a lethargy so intense I could not lift my head from my pillow.
How is one supposed to know they have contracted Lyme disease? It is the Great Imitator. The wide range of symptoms vary from individual to individual, and also vary depending on the day, mood, weather, or any random stimuli. Lyme disease is often misdiagnosed for fibromyalgia, chronic fatigue syndrome, lupus, arthritis (Lyme disease was originally called Lyme Arthritis for the accompanying joint pain), mental disorders, and Alzheimer’s disease. The only 100% accurate method for diagnosing Lyme disease is the erythema migrans, EM, also know as the bulls-eye rash. Depending on whom you talk to, the percentage of Lyme patients who had the EM is between 27% and 80%. In a recent study by lymedisease.org (LDo), of more than 3,000 patients surveyed only 40% reported having the EM. If you never experienced the rash, how would one know they have Lyme disease? Adding yet another layer of confusion and frustration is the lack of accurate testing. A two-tier testing process is currently used. The first is the enzyme-linked immunosorbent assay(ELISA). The second step is the western blot test. According to LDo, this two-tiered system misses roughly 54% of Lyme disease cases. In contrast, the test for HIV/AIDS is 99% accurate. There are other tests available that are more accurate but are not approved by the CDC. In the United States there are only three labs that specialize in testing for tick-borne diseases and are recommended by LDo. They are very expensive. At IGeneX in San Jose CA, a test for Lyme costs between $500 and $750, if you want to be tested for the co-infections that will add another $816 to your bill. I had to send my own blood samples off to a specialist in Mexico City, which only cost $250 for Lyme and co-infections.
Symptoms of Lyme
The earliest symptoms of Lyme disease are often mistaken for the summer flu, or my Poo Flu. Many of the symptoms are consistent with a normal flu but most cases occur between May and September. Unless this illness coincides with the bulls-eye rash, most people will blow it off as “just the flu.” Generally, people recover from this flu, and in some cases the body is strong enough to kill of the Lyme bacteria. In other cases, such as mine, the symptoms grow in number and severity.
- Rash (EM or other)
- Flu-like symptoms
- Muscle pain
- Joint pain
- Neck pain
- Sleep issues
The list of symptoms seems endless. Not every patient experiences every symptom, nor do they experience them in the same degree. Symptoms randomly seem to come and go. Even at my sickest, I had days when I felt great, almost normal. Sadly, those days were too few and too far between.
I often describe this as “bone-tired”, it is not like any exhaustion I experienced in all my years of racing bicycles
- Migrating joint pain
- Muscle aches
- All over, unexplained achiness
- Shortness of breath
- Chest pain
- Heart palpitations
- Low blood pressure
- Mood Swings
- Brain fog
- Difficulty thinking or reading
- Unable to concentrate
- Bell’s Palsy (facial paralysis)
- Tingling, burning, and numbness in the extremities
- Hypersensitivity to touch and temperature
- Muscle weakness and loss
- Impaired balance and coordination
- Hair loss
- Too much sleep
- Too little sleep
- Interrupted sleep
- Early waking
Tinnitus (ringing in the ears)
Neck crepitus (crackling in the neck)
Vision issues (double, blurry, floaters)
Unexplained weight loss or gain
Hypersensitivity to alcohol
Loss of libido
For a complete list of symptoms click here.
While most of my symptoms have abated, I don’t know if I will ever be symptom free. It is said that the Lyme bacteria never completely die. One can go into remission, but at this point a cure is a very rare beast. Every time I feel a pain in my fingers, ringing in my ears, that bone-tired lethargy, or my neck crackles when I roll my head, I fear the pinche borrelia burgdorferi bacteria have awoken and are threatening to invade my entire body once again.