It’s early summer 1984. A 28-year-old girl in a rural area of Connecticut develops a high fever, extreme headache, neck and joint pain, vomiting, and bull's eye rash on left thigh. Doctor diagnoses Lyme Disease, prescribes one week of Doxycycline. Patient throws up the first two pills, but is able to keep them down on the third try. Patient feels much better.
Late summer 1984: Patient begins to suffer breathing difficulty, nausea and dry heaves, extreme dizziness and word retrieval problems. No one knows why.
Let’s fast-forward. 1985 - 1998: Patient continues to experience above, as well as developing memory loss, double vision, hyperacusis (exaggerated response to sound), difficulty swallowing, "air hunger," drenching cold sweats, irritable bladder, irritable bowel syndrome, numbness and tingling, low body temperature, panic attacks, crushing fatigue, constant sinus infections, hair loss, skin rashes, mouth ulcers, muscle pain, pleurisy, loss of balance, dry eye syndrome, Reynaud's syndrome, and last but not least, loses the use of right arm and hand. The tests this patient has had to undergo in this 14-year period have cost thousands...the doctors number in the dozens...no one knows what's wrong; the doctors are searching for the "zebra." They will learn there is no zebra, just a horse out in our own back yard.
1998: Patient finally has to quit her part time job at a library. Painful neuropathy of both legs and loss of use of right arm and hand renders her incapable of work now. Very sadly for her, patient has to apply for Social Security in her 40's. Something no one seems to get a handle on has stolen patient's life away. The one and only clue? That the patient has never been well since getting Lyme Disease in 1984.
Then a Lyme activist comes along. Mentions the possibility of “chronic” Lyme. Patient has never heard of this. Patient finds copies of 1984 records and brings them to current physician. "You were never treated properly," he/she (I won't tell you) says, and orders 3 weeks of IV. Patient feels miserable. Doctor agrees in light of all this new evidence to start patient on antibiotics again - to be taken until she feels better, no matter how long. Patient is extremely skeptical. Who could get well so long after the fact? And why this open-ended time frame, that has to be wrong, doesn't it? Isn’t the normal length of time for antibiotics about 10 days (unless you’re taking them for pimples, then it could be 2 or 3 years)??
Patient doesn’t feel any better the first month. Or the second month. After 3 months the dosage is upped. 18 months of strong dosage of Doxycycline later – and patient has a great deal of her life back. Patient is NOT "cured." Patient must travel out of state for more treatment - CT doctors live in fear. Patient will never be "cured." She must go on long-term antibiotics when symptoms become unmanageable. She acknowledges the threat of “super-bugs” from antibiotic resistance is a real one (though has never heard this from a dermatologist treating a patient with acne, and what about the loading of antibiotics into chickens and beef?) She does some research and finds that going off medication too early can indeed lead to this drug resistance. “Long enough and strong enough” – those are the words a Lyme patient and treating physician must live by.
Don’t worry. This patient is not gullible enough to fall for "snake-oil" promises of a cure from "unscrupulous" practitioners. Patient only knows a handful or less of completely unscrupulous doctors. The ones who try to “set up” Lyme-literate physicians lead the pack. They kill two birds doing this – they keep us sick, and they ruin the practice of good physicians. If only they’d use their education and power in a positive way - toward getting us better, toward helping us function. Or at the very least get out of our way. Well, now they might have to. An historic law was signed in Connecticut on June 21, 2009 by our Governor – a law stemming from a bill voted on unanimously by a courageous and caring House and Senate. It’s very simple language, but powerful. Thank you, Governor Rell, you have picked up a pen and paved the way to restoring the lives, livelihood and hopes of your constituents. Doctors? Please, start your engines.