I’m the last person on earth you would expect to get Lyme Disease. I walk the dogs only in my own yard. My idea of a hike is going from the car to the mall entrance. Nonetheless, Lyme, a tick-borne disease, has been plaguing me for 15 years.
I was first diagnosed in 1999, after struggling with knee pain and intense fatigue for quite a while. I went to a million doctors, none of whom even mentioned Lyme. “Oh, you’re stressed out being a single mom, working full time.” I’ve learned this is what docs like to say to women – even women doctors say it!
I mentioned my symptoms to a colleague at work. She recommended her Lyme literate doctor, whom I will call Dr. S. He was very helpful, had me tested by one of the few labs in the country that actually has an accurate Lyme-detecting test, and put me on a lot of antibiotics. I felt better!
But here’s the mean part of Lyme. It hides. Once those little spirochetes realize the antibiotics are attacking, they burrow into muscle so they won’t be killed. So after I felt better and the doc said I could stop taking the antibiotics, the Lyme spirochetes came out again.
A common symptom of Lyme is “brain fog.” It makes you feel as though you are walking through quicksand, struggling to stay upright, and you feel that way both physically and mentally. I had debilitating fatigue and joint pains, but I forgot about the Lyme doc, and went to a rheumatologist. She diagnosed me with rheumatoid arthritis, and gave me medicine. It didn’t help. She finally got disgusted with me and told me I didn’t have rheumatoid arthritis. I flunked out of her specialty, I guess.
I went to a party where that colleague who had first recommended Dr. S. was present. Here’s what Lyme does to one’s mind: we had a lovely reunion (she retired several years earlier because of the effects of Lyme) and started talking about our Lyme experiences. I mentioned my doctor and she said, “Oh, I went to him too! Isn’t he great?” and we both agreed he was. Neither of us remembered our earlier discussion in which she recommended this doctor to me.
Symptoms returned, especially the fatigue. I was napping all weekend. My kids were concerned. I went to a physiatrist, who prescribed aquatherapy (exercising in the pool), which was great for my joints, especially because the pool was heated. But nothing was helping the fatigue.
Then my little Shih Tzu bit my finger. He didn’t mean it, but there was bleeding. I called my internist, who said it could be dangerous. She prescribed an antibiotic to make sure the dog bite didn’t get infected. Once I started taking the antibiotic, I suddenly experienced mental clarity! It was astounding, as though a window had opened. I remembered the previous diagnosis of Lyme, and the amazing Dr. S. I returned to him and started an extended course of antibiotics. The joint pain abated and the fatigue was manageable.
I started reading about Lyme. There’s a cadre of doctors, many of them in New Haven, who vehemently oppose the concept of chronic Lyme. They insist Lyme can be cured with 2 weeks of antibiotics. Former Attorney General, now Senator, Richard Blumenthal investigated the Lyme controversy, heard many speakers (doctors and patients) and discovered there was some sort of financial benefit that these opposing doctors stood to glean if they could discredit chronic Lyme. They were invested in a vaccine of some kind. I’ve never really understood why anyone would care so much if a doctor prescribed antibiotics. However, some doctors have actually been investigated and fined for being Lyme sympathizers. It’s unbelievable – like the Salem witch trials.
I learned that Lyme imitates lots of other conditions. My kids make fun of me, saying that if I have a zit on my chin or a cavity in my tooth, then “It must be Lyme!” But I’m living with it, and I know it’s real. A couple of years ago, I suddenly developed scary high pressure in my eyes, with no family history of glaucoma. I’ve had a chronic cough for over 18 months, and no medical person can figure out why. The joints in my thumbs scream with pain some days, yet other days they are fine. Sometimes I can walk around NYC without a problem, and other times, I can’t even push down on the clutch when I’m driving. Or I’ll take a step, my knee gives out and I end up on the floor. I feel as though bugs are crawling on my legs (they aren’t). All of these are known symptoms of Lyme Disease.
But I AM LUCKY! There are people who are bedridden from Lyme, who have lost their independence, mobility, and mental faculties. Dr. S. has told me about people diagnosed with multiple sclerosis or congestive heart failure, who miraculously recover after a long-term course of antibiotics, because it was actually Lyme Disease causing their problems. So although some days I wake up only to have to crawl back into bed and sleep for 8 or 10 hours, I’m still a functioning human being who can work full time and play with my grandson.
One last thing: 50% of Lyme patients never develop the famous bull’s eye rash. The damn ticks are everywhere and almost impossible to see. Do not let anyone tell you that you don’t feel what you are feeling!
If anyone has chronic symptoms that are making them feel elderly before their time, confused, disorganized, tired beyond belief, or other stuff that no one can explain or fix, I recommend you go to http://ilads.org/ and wander around the site. You will learn a lot, and maybe you will find an answer to why you feel so crummy. This applies to your children, too. Lyme can be devastating to kids.
I would be happy to share what I have learned – just ask me.