Colleen Donovan's long journey with Lyme disease and its complications began typically — with a bite and and the telltale "bullseye" rash. Ms. Donovan went to a walk-in clinic where they put her on Doxycycline, the standard protocol for Lyme that has been caught early. They also gave her a blood test for Lyme.

    But then things took a strange, and in hindsight, very unfortunate turn.

    "I called and they told me that the test was negative and I should stop taking the Doxy, so I did," she said. "That was bad."

    Now, the medical community knows you don't really get an antibody response for 2-4 weeks, meaning Ms. Donovan's disease went undetected, and the short course of antibiotics further suppressed her body's ability to fight off its effects.

    Ms. Donovan never got a fever, bolstering the sense that she did not have the disease. It wasn't for several years when, following a course of antibiotics for another issue, Lyme symptoms presented themselves, with a vengeance.

She tried other medications, and was able to feel decent for a period of time, but her symptoms would always reappear.    

    Ms. Donovan is no longer certain how many of her symptoms, including brain fog, fatigue, and crippling nerve pain, are the result of a lingering Lyme infection, or if she is now primarily dealing with autoimmune issues that were triggered by Lyme. She has also since been diagnosed with Babeseosis, another tick-borne illness.

    "I think Lyme mimics a lot of things; there's this overlap with autoimmune disorders like chronic fatigue and fibromyalgia. They don't have a lot of answers.

"A lot of my original symptoms are gone, but I have new ones. Did I just trade one bad thing for another? I'm not really sure."

    Lyme was initially described in the mid-1970's when a number of people in Lyme, Connecticut presented with symptoms including joint pain, fever, and rash. It has since spread to all 50 states; officially 30,000 new cases are reported each year but experts fear the true number, including undiagnosed cases, may be closer to 300,000.

    By all indications, Ms. Donovan, of Bristol, is suffering from what is commonly referred to as "chronic Lyme," although many in the medical community, including experts at the Centers for Disease Control, reject that term. There is significant confusion surrounding how to define a condition that cannot readily be measured in a laboratory, as many sufferers, once "treated" with Doxy or other medications, don't appear to be ill — at least in a petri dish.

Their blood work is clean.

    The result is that a lot of people presenting with lingering Lyme symptoms are treated very poorly by certain members of the medical community that become frustrated when presented with a case that does not add up.

    Ms. Donovan has experienced that on more than one occasion.

    "They can actually be really hostile. Last January I went to Rhode Island Hospital with really bad nerve pain. I was in so much pain, and it was really early in the morning, and I had nowhere else to go," she said.

    "When we were doing the intake I mentioned my Lyme diagnosis, and I was pounced on."

    "The E.R. doctor just stood there and told me that's not real, theres no such thing, and they need the beds in the hospital for actual sick people. That's when I started crying," she said. "You expect when they go to the hospital that they are going to treat you compassionately, even if they don't know what's wrong."

    The doctor sent in a psychologist to talk to Ms. Donavan about meditation and the mind-body connection, and getting therapy.

    The same thing happened with Ms. Donovan's former primary care doctor, in Boston.

    "She got pretty upset with me, she said the blood work showed there was nothing wrong with me and I just needed to manage my stress better."

    That doctor sent Ms. Donavan to a psychiatrist who put her on two antidepressants, and then to a neurologist who wanted to prescribe Adderall and an anti-narcolepsy drug to combat Ms. Donovan's fatigue. When Ms. Donovan resisted, the doctor accused her of wanting to be sick.

    Ms. Donovan never went back to that doctor; now she has a primary care doctor in Bristol who helps manage her symptoms, though she conceded it must be frustrating for her doctor to manage symptoms for a condition that doesn't appear on any test.

    "There are sympathetic doctors out there who are trying to help, but most of it is trial and error," she said.

And many of the "trials" are not covered by heath insurance, and are pretty expensive. "You can burn through all your money pretty quickly if you don't have an unlimited income."

    As for the future, Ms. Donovan, not surprisingly, wishes scientists would develop diagnostic tests that are more accurate. The one she originally took misdiagnosed Lyme 40-70 percent of the time.

    Ms. Donovan, and other people in her shoes, are left to search for relief largely on their own. Support happens mostly online, as Ms. Donovan concedes that she and her peers don't travel much, and for many, getting through the day, and work, if able, consumes most of their energy. "Most of our free time is spent napping," she said. "You want to help other people who are struggling but you don't have the energy."

    Now that she has had Lyme as long as she has, Ms. Donovan is skeptical that antibiotics are the answer for eradicating Lyme for good. Ample evidence exists in primate studies that the Lyme bacteria survives long-term antibiotic therapy and appears in tissue necropsies.

    Certain therapies may show promise, and are being researched, including fecal transplant therapies (thought to be helpful in Crohn's disease) and hyperthermia treatments. But they are not FDA approved and relief-seekers are forced to travel overseas for these experimental treatments.

    Trained as a zoologist, and with experience working in both zoos and research facilities, Ms. Donovan had to give up plans for graduate school; she moved back home with her parents 4 years ago, and works as a dog sitter. She's getting discouraged by the unexpected detour her life has taken. "At age 36 I had imagined I would have a career, maybe a family."
    Still, she's far from throwing in the towel.

    There's a new therapy that shows promise, and unlike some of the more complicated ones that require money and a passport in absence of FDA approval, this one can be done at home.

    Bee venom.

    "I mail-order them from South Carolina; forager bees that are on their last 3 weeks of life."

I use those to sting myself on my spine," Ms. Donovan says. She knows it sounds a little drastic for the uninitiated, but she's committed to getting her life back and willing to try anything for the possibility of long-term relief.

    This treatment was popularized by a woman named Ellie Lobel. A longtime Lyme sufferer, Ms. Lobel "moved to California to die," she claimed, when she was attacked by a swarm of killer bees. It completely turned her health around.

    "She developed this whole protocol. I was kind of afraid to do it, but now I've worked up to stinging myself 3 times a week, with 10 bees each time."

    Ms. Donovan's back is marked by pinhole wounds where she stings herself next to her spine. Some "experts" call it a fad, and claim it's dangerous and ineffective, but the anecdotal evidence is intriguing enough to make the momentary pain well worth it.

    The average amount of time for efficacy is 2 years. But if it works, it will be well worth it.

    She demonstrates how she uses the tweezers to hold the bees and administer the sting. The animal lover in her feels badly for the bees, but if Ms. Donavan has learned anything in this Lyme journey, is that she has to help herself if she wants to find answers, as the standard protocols are not working.

    "I'm determined not to take any more antibiotics," Mrs. Donovan says.