Having been in veterinary practice on both the East and West coasts, I’ve witnessed the impact bacteria, fungal, parasitic, and viral organisms have on the health of my patients. However, few are as dreaded as Lyme disease, one of the most common tick diseases in the world.
I treated Lyme disease — a bacterial disease caused by Borrelia burgdorferi — many times while living in Washington, D.C., but never in Los Angeles. As the warm and dry climate of Southern California doesn’t support the life cycle of the tick as well as the seasonally warm and humid climate of the East coat, the majority of my patients rarely are bitten by ticks or contract tick-borne diseases. Yet I still recommend the use of anti-ectoparasite products and making lifestyle choices to prevent illness-spreading bugs from getting onto our pets. What you may not know is that we also must take certain precautions when dealing with this potentially life-threatening and often chronic illness.
I lived in East Lyme, CT as a child but was fortunate to never come down with the disease during my time there or in other tick-endemic areas. My brother was not so lucky. He had a mild case of Lyme Disease as a child, but fully recovered. A good friend and fellow pet-media colleague, Nikki Moustaki, was also not so fortunate. She still endures the daily struggles of managing the chronic illness of Lyme Disease.
On so many occasions, I’ve seen the clinical signs of fever, lethargy, muscle and joint soreness, decreased appetite, and others in dogs, but I’ve never diagnosed nor treated a person. So given that May is Lyme Disease Awareness Month, I reached out to Moustaki to learn of her first-person experience enduring the hardships associated with Lyme Disease.
1. What were the first clinical signs of Lyme Disease you experienced and are they still occuring?
About three days after the tick bite (which I thought nothing about, having been bitten by dog ticks many times, not realizing it was a deer tick), I contracted what I thought was the flu. After seven days I got a little better, but then got worse again. I know now that this symptom was not due to the Lyme Disease, but was due to one of the co-infections I caught along with Lyme: Colorado Tick Fever, which is a self-resolving virus. After about two weeks I started to feel better. Then, one morning I woke up feeling terrible. I tried to get up and realized that I was paralyzed on the left side, blind, and could not speak. I could think, but my body wasn't working. Those were the most dramatic symptoms, which resolved as the day went on. I dragged myself to a neurologist, who said there was nothing wrong with me.
After that, my symptoms included profound fatigue, migraines (lasting 10 months), visual disturbances, weakness on the left side, brain fog, inability to access language, inability to type (words came out jumbled), very loud ringing in the ears, trouble balancing and walking, tremors, seizures, creaky neck, wooziness, insomnia, memory loss, inability to concentrate, hallucinations, stammering/difficulty speaking, numbness in left hand/inability to use left hand, forgetting how to perform everyday tasks, getting lost in areas I was familiar with, low body temperature, and heart palpitations, among others. My case is all neurological, so they call it Neuroborreliosis, because the Lyme bacteria, which is a spirochete (shaped like a spiral), is called Borellia.
After 18 months of treatment, I have golden days, sometimes weeks now, where I feel kind of normal. Not perfect, but not horribly sick. For the most part I still struggle with symptoms, but now it's six to eight symptoms rather than thirty. I was also diagnosed with Rocky Mountain Spotted Fever, Relapsing Tick Fever, Cat Scratch Fever, Thypoid Fever, and Colorado Tick Fever. These are just a few of the "bonus diseases," the co-infections, that many Lyme Disease patients contract from the initial tick bite. I still have symptoms from the Cat Scratch Fever (Bartonella) — that's another infection that's difficult to treat and eliminate.
2. What were the treatments for Lyme Disease you received and were they successful?
It took nine months and 17 doctors (including three emergency room evaluations) to achieve my diagnosis of Lyme Disease, an illness that should be far more widely understood among doctors but is not. Veterinarians know much more about this disease. I finally found a Lyme-literate physician who easily diagnosed me with Lyme. Before that, I had been taking a variety of medications for misdiagnosed illnesses.
I started with five months of Doxycycline and improved a lot, but not without copious suffering. With Lyme, you don't just "get better." You get worse before you get better, a phenomenon called the Herxheimer reaction (or Herx), also known as a healing crisis.
I did some intravenous antibiotics and infusions of vitamins for several months. Then I started on a combo of Azithromycin and Ceftin, and have been on those for nearly a year. When I try to go off of them, I'm back in bed, unable to function, within three days. The meds are obviously keeping some bacterial activity at bay, but they aren't really killing the bugs entirely. I have also pulsed these antibiotics with Metronidazole (Flagyl), which is supposed to bust the cysts that the Borellia bacteria create to protect themselves. I did get a little better when I was doing that, and may do it again.
3. Have you ever had a pet infected with Lyme Disease?
All of my dogs get yearly testing for Lyme and have all been negative, but I suspect that my darling Pepper, who has since passed away, had Babesia (another tick-borne bacteria) and was never treated for it.
I feel so sorry for dogs with Lyme because they can't tell their owners how bad they feel. I can only hope that most veterinarians are up-to-date on the signs of this illness in pets.
4. What is your advice for people who are infected with Lyme Disease?
The one thing that Lyme patients need to have in excess is patience. This is a very difficult infection to cure once it has gotten into your brain and joints. Also, you're lucky if you can find a doctor to treat you in the proper way — many doctors don't even believe that this disease exists, if you can fathom that. It exists in all of the lower 48 states and in many other places in the world.
Dr. Patrick Mahaney