The tests came back - all normal, no Lyme, but an unusually high ANA, which tests protein, specifically antinuclear antibodies, in your blood. The doctor suspected an autoimmune disease, lupus to be exact, and sent me to a rheumatologist. He was also a good doctor, taught and did research, and he listened. He did some more blood, lungs, heart testing and diagnosed me with a "very rare autoimmune disease" called Mixed Connective Tissue disease. Made sense. Except I didn't have all the symptoms. In fact I only had a couple. He said I'd develop more symptoms in the next 10 years. What?! Something inside me said: "That's not what you have."
I also had had knee problems in the summer of 2006. A swollen sore knee. Doctors said it was my crooked kneecap. One wanted to remove it. Hobbled to another who said, "We have to clip the ligaments and that will do the trick." This one was a good doctor., so I had the operation. Didn't work. Had gel injected behind the kneecap along with a cortisone shot (the worst thing for Lyme). That didn't work either. Said I would need a knee replacement eventually. The swelling came and went.
Lower back ache. Went to the doctor. Recommended physical therapy. Went. Didn't work.
I came home and got on the computer. Thank God for the Internet. Lyme disease. It frequently came up when I put in my symptoms. I read more. And more. Blogs, Web sites. The light slowly went on as I saw myself described. Things I didn't even know were symptoms. Brain fog. No energy. Some joint pains. Swollen ankle. Heel pain. Sore neck. Weight gain. Ribs sore. Lower back pain. Ocular migraines (you get the sparklies without the pain). Calf leg cramps.
Did I have all that? Yes, some were infrequent symptoms I hadn't really even thought about until they were pointed out, and they had appeared slowly over time. I wasn't reading the signals. I didn't know the language of Lyme back then. I had ignored almost everything except the fatigue and the knee. In fact I push through most pain and discomfort without awareness. This new information made me finally stop and take stock.
My dear boyfriend bought me two books on Lyme and their information just about convinced me. I was sure I had Lyme. But where did I get it? When did I get it? I sent for my records from my doctor to see if I could track anything down. I never saw a tick and never had a rash that I could remember. Then I saw that in January 2003, I had gone to my doctor with a flu-like illness and a swollen knee.
Bingo! Those are classic Lyme symptoms. I had begun hiking in the Las Trampas hills right behind my home in Alamo where I lived at the time. And ticks like to cling to grasses and shrubs, so they can jump on any carbon dioxide-emitting creature that comes by. Who knows how many creatures carry Lyme. In California, Lyme is carried by the deer tick, Ixodes pacificus, the Western black legged tick that starts out the size of the period at the end of this sentence. As they mature they grow to about the size of a sesame seed. Deer, squirrels and rats and mice are carriers. They don't get Lyme symptoms. The rest of us do. Tick jumps on carrier, tick bites carrier, tick jumps off. If the carrier is a person, Lyme is transmitted. And new evidence says it only takes four hours of tick attachment for you to get Lyme. If you pull off that tick five hours later, you could have Lyme disease.
One San Francisco doctor's name kept coming up in the blogs and on some Lyme Web sites. I made an appointment and had to wait two months, until August 2008. I was nervous. Was it all in my head? I wasn't that sick. Told him what I thought and, without missing a beat, he agreed and suspected, from my descriptions, that I might have another tick-borne disease as well. I asked to be put on antibiotics right then. Sent my blood to a Lyme-sensitive lab in Palo Alto. Normal lab testing rarely catches Lyme, which is difficult to catch with a blood test anyway. One month later - yes, I had Lyme disease and Bartonella, one of the many co-infections common with Lyme. I was almost relieved. At least it had a name. I had no idea the severity of this disease. I was beginning the journey I am on now.
What they test isn't the Lyme bacteria in your blood, but the antibodies your system creates against it. As you are treated and your immune system gets stronger, you put out more antibodies. So if a test doesn't show Lyme right away, that doesn't mean you don't have it. It may just mean your immune system hasn't produced measurable antibodies. Doctors have to go on what patients describe for now. It's called clinical evidence. Eventually it shows up in the tests.
Met a lady from San Ramon the last time I went to my doctor. She had it - hers was manifested in stomach symptoms - as did her college age daughter, who had two co-infections as well. Hers was nuero-borrealis - she couldn't retain anything she was learning. San Ramon! Alamo! It's right here. In fact my doctor currently treats hundreds - that's HUNDREDS - of Lyme patents, most from here in the Bay Area.
Every parent should be aware of ticks and Lyme; 25 percent of Lyme patients are kids. If you live where deer and squirrels live, then you can get Lyme. Kids should be checked after playing outside. One author described her two sons' bouts with Lyme, both now cured. One was ill for seven years. Couldn't even go to school. They thought he had all kinds of diseases - childhood arthritis, mental problems, eye problems, flu. We need to know! If I got it, you can get it.
Centers for Disease Control says one has to have a bulls eye rash, but more than 50 percent of Lyme patients never see one. This disease is the No. 1 vector-borne disease in the U.S.; we have five times the number of Lyme sufferers as AIDS patients. Why don't we know about it? And why didn't my doctors know about it?
CDC's official line on Lyme long has been controlled by a group of doctors, Infectious Disease Society of America (IDSA). They have a narrow definition of Lyme - just rashes and joint problems - completely ignoring the brain symptoms, the stomach problems, the rest of the Lyme symptoms that masquerade as other diseases. Lyme is a very difficult disease to diagnose, but if I could diagnose myself off the Internet, then why isn't my doctor getting the information he needs? Doctors now doing research are too few and far between, and are mostly doing it without financial help. I've found that these doctors had Lyme at one time and that's how they became interested.
One M.D. was diagnosed with advanced multiple sclerosis. He read about Lyme, went to a Lyme-literate doctor and is now cured and doing research. Lyme mimics a lot of diseases - multiple sclerosis, Parkinson's, Lou Gherig's disease, fibromyalgia, chronic fatigue, lupus - my doctor said I would be surprised at the number of cases of "lupus" he has cured. There was even a test of cadaver brains from the Alzheimer's Association and seven out of 10 had the Lyme bacteria. Mine masqueraded as an autoimmune disease.
How many other "diseases" are Lyme? Without informed doctors and better tests we will never know. This is a huge problem that keeps thousands of Americans ill and out of work. Insurance companies won't pay for Lyme, but go along with doctors who deny that chronic Lyme exists. Lyme disease doesn't go away. It grows and debilitates. And it can kill. I was lucky to find mine after only five years. Most patients go seven years and to scores of doctors before they are diagnosed - if they are diagnosed at all. Lyme caught right away takes only about two months of antibiotics to cure. But most Lyme is misdiagnosed. So chronic Lyme can take years to treat. Why don't the insurance companies realize this?
Because Lyme is a bacteria, albeit a virulent one, antibiotics work against it. You start treatment, you get worse, you get better, you get worse - the bacteria's cycle seems to be every four weeks. It's a nasty bug. Some people, not knowing, start the antibiotics and get really sick within a few days - it's called the Herxheimer effect - so they stop their antibiotics. Big mistake. Because Lyme is intracellular and extracellular, it is often treated with two different antibiotics. Some people who don't have a good immune system are critically ill right away. They may require intravenous antibiotics and medical support. And if you have a co-infection, it has to be killed before the Lyme can be treated effectively.
If I got another tick bite, I would find myself a doctor who would treat me immediately, THAT DAY. I fully intend to be cured. After I started treatment, I was fairly sick for a time but just recently I have had the best three weeks in several years. This reminded me how I can feel again. I was lucky to find a doctor who is a member of the International Lyme and Associated Diseases Society (ILADS). These wonderful, true scientists are a growing group of Lyme-literate doctors who keep in touch with each other to combine their acquired knowledge gained through experience to recommend treatment for Lyme.
I know way more than I ever wanted to about Lyme and this is just the short version. I have been researching and reading and learning. I know this: If we don't start paying attention to this disease, it can become an epidemic - or has it already?
Sue Savod is now living in Diablo and taking her antibiotics. She is focusing on her career in animal portraits while regaining her health. Contact her at firstname.lastname@example.org.
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