A Walk in the Woods – with a Twist of Lyme
(read this before venturing outdoors this spring)
By Ewa Milewska
Early in June 2005 one of the very first really warm spring days arrived in Tiny Township. I could finally wear just sandals on bare feet, shorts and a shirt. I sprayed myself with citronella repellent and went to explore a patch of woods near my property. I wish I knew then what I know now…
Five days after that walk I noticed an itchy red mark on my shoulder. Over the next few days the circular rash expanded to about 15 cm in diameter and developed a darker centre with a few blisters. It was strange and burning uncomfortably, so I went to see a doctor in a walk-in clinic. The older woman suspected that something had bit me and I remembered then a tiny black insect, not bigger than a sesame seed that I had brushed off my shoulder. She prescribed a week of antibiotics.
On the Internet I found pictures of very similar “bull’s eye” rashes and read that they were caused by a tick bite. Once I finished the prescribed course of antibiotics, I returned to the walk-in clinic and saw another doctor, a young woman this time. I suggested that I might require further treatment, because I could possibly have Lyme disease. She just laughed at me and told me that in Ontario you only can get Lyme disease near Lake Erie, so there is no way I could possibly have Lyme disease. The rash had started to fade by then so she took it as a sign that I was getting better anyway.
In three weeks another rash appeared on the back of my thigh, a carbon copy of the first one but lighter in color. It matched the description of what is known as a disseminated secondary rash, which is a sign that infection has spread via the bloodstream to other parts of the body. This rash, too, gradually faded away over a period of a couple of weeks.
By the middle of July I developed a strange mid-summer flu, with body aches and crushing headaches. I was finally able to see my family physician, who agreed that clinically it looked like it could be Lyme disease. She prescribed three weeks of antibiotics, as per official Lyme guidelines, and a test for Lyme disease, which came back negative. I felt better.
Unfortunately within weeks of finishing the antibiotics, my health went downhill again. I developed persistent gynecological bleeding, stomach bloating, intestinal cramps. My muscles and eyelids would twitch uncontrollably for hours at a time. I often felt dizzy: I remember holding onto the walls when walking down the hallways at work. I experienced “brain fog” and short-term memory loss. I remember sitting at a meeting, trying hard to concentrate on what people were saying. Even when I could finally understand, I still could not respond because I could not remember what they had just said.
One day – it was fall by then – on a regular walk with my dog, I realized that I was barely able to lift my feet and, if not for the dog that was pulling with all his might on the leash, I would not be able to move forward. I could not deny anymore that my sickness was back. I went to see my doctor again.
She ordered various tests and they all came back OK; the second Lyme test coming back negative just like the first one done in July. According to all the tests there was nothing wrong with me!
Lyme Disease is difficult to diagnose and is often called a “great imitator” because it mimics various illnesses as bacteria move around the body and attack various organs. Lyme patients often are misdiagnosed with MS, ALS (Lou Gehrig’s Disease), Fibromyalgia, Chronic Fatigue Syndrome, scleroderma, Crohn’s disease, various forms of arthritis, heart block, Alzheimer’s, etc.
Lyme disease sufferers often see many doctors before a proper diagnosis is made, if ever. Sometimes they are told that “this is all in their heads” and are sent to a psychiatrist. Ironically, Lyme disease can actually cause mental disorder when the brain is involved.
In my case, I noticed that my condition would get worse about every four weeks, which, I learned, can be associated with the cycle of the bacteria, Borrelia burgdorferi. (Other members of the same family cause syphilis and leptospirosis.) This type of bacteria is very difficult to completely eradicate because it does not stay just in your bloodstream, where antibiotics are most effective, but it often hides in hard to reach places like your skin, joints, brain, and internal organs. Also, in the presence of medication, Borrelia can assume a cystic capsule-like form, which resists penetration by drugs and antibodies. Later, under favorable conditions the cysts can reconvert into spiral form, which does most of the damage.
In spite of “normal” test results, my family physician could clearly see that I was seriously sick and decided to resume the antibiotic treatment. Unfortunately, after only six weeks I had to stop taking them. Since I did not take a sufficient quantity of probiotics along with the antibiotics, I developed systemic yeast infection. Official guidelines call for no more than three to six weeks’ treatment, but this is often not enough to completely eradicate the disease.
It was not enough in my case either. In a few weeks, my original bite site started to burn again and new blisters appeared. I also developed a strange skin condition: circular patches the size of a quarter, which would start as a red itchy bump that in a few days would assume a pearly, rough paper-like texture. In its advanced stage Borrelia burgdorferi often attacks joints, which become red, swollen and warm to the touch. If not treated, infected people may end up paralyzed, bed ridden or in wheelchairs.
It was time to see a specialist. There are very few LLMDs (Lyme literate medical doctors) who specialize in Lyme disease and co-infections (Lyme is not the only disease that is spread by tick bites). My LLMD ordered various tests to check for possible illnesses and co-infections. Since my third Lyme test performed in Ontario came back negative again, he ordered a different, more sensitive test from a highly specialized laboratory in California. I had to pay for it out of my own pocket, as it is not covered by insurance. This test came back positive.
According to various studies the rate of false negatives of the Lyme test now used in Ontario can be as high as 70%. It is important to recognize that diagnosis often needs to be based on clinical symptoms rather than blindly believing in the highly inadequate testing methods. A comprehensive list of these symptoms is available on www.canlyme.com, the website of the Canadian Lyme Disease Foundation.
After a five month course of a carefully monitored combination of medications, I finally felt like I was getting my life back. I have been off medication and symptom-free for several months now, and I hope the disease is gone for good!
In Canada the current extent of the disease is unknown due to outdated diagnostic and surveillance methods. According to the Ontario Ministry of Health and Long-Term Care, there were only 38 cases of Lyme disease in Ontario in 2005, and 36 cases in 2006. These numbers look very low, when we realize that Ontario is adjacent to the US states with the highest incidences of the disease, and 20,000 new cases are reported in the U.S. every year. According to the US Center for Disease Control, the true number of cases may be ten times bigger.
Lyme disease can be relatively easily treated with a few weeks’ course of antibiotics, but only at a very early stage of the disease. The longer one waits and allows the bacteria to spread around the body, the more complicated the treatment becomes, with relapses and recurrence of the disease. Some damage may be irreversible, but even in the very advanced stage most patients improve on antibiotics and their quality of life gets better.
As always, prevention is the best treatment. When going into the woods or fields with long grass:
• wear long sleeves and long pants tucked into high boots
• put on a repellent containing DEET
• check your body after outdoor activities, and
• learn how to safely remove embedded ticks.
But remember: few people actually recall tick bites, which often happen in hard to see places, and only about half or less develop a rash (erythema migrans).
Ticks brought to Canada by migratory birds from the south are then carried by deer, mice and other rodents. More are surviving our northern winters thanks to the warming climate. In summer 2006, an infectious disease researcher was called to the Thousand Islands National Park because so many park employees were finding ticks on themselves. He was shocked by the sheer number of ticks on the islands; one in ten ticks tested carried the Lyme bacteria. How many hot spots like this one are there in Ontario? Nobody knows for sure.
And let us not forget our pets! They can get sick, too. Fortunately, many veterinarians are currently more knowledgeable about Lyme disease than MDs.
If you suspect you might be sick with Borreliosis, which is another name for Lyme disease, do not get discouraged by oblivious doctors. Insist on receiving specialist attention. To learn more about Lyme disease, visit www.tinycottager.org and click on Health Concerns.