The debate over chronic illnesses stemming from tick bites has landed on the steps of the U.S. Capitol.

The House of Representatives last month approved legislation introduced by Rep. Chris Gibson (R-N.Y.) that would require the federal government to conduct and support research on Lyme disease and other tick-borne illnesses. The Tick-Borne Disease Research Accountability and Transparency Act of 2014 still needs to pass through the U.S. Senate.

Meanwhile, this weekend, doctors, patients, and Lyme disease advocates will assemble in Washington, D.C., for the 15th annual convention of the International Lyme and Associated Diseases Society (ILADS).

It’s an important time for people suffering from illnesses they believe are related to tick bites. A longstanding feud between the Infectious Diseases Society of America (IDSA) and ILADS is raging with new fervor as more and more people nationwide report debilitating symptoms that last for decades. The IDSA and the U.S. Centers for Disease Control and Prevention (CDC) have created treatment guidelines for Lyme disease based on a number of scientific studies showing that a short course of antibiotics can clear the infection in most people, though several studies mention that one or more subjects experienced "residual symptoms."

Patients who believe they have chronic Lyme disease don’t accept the answers doctors give them — that their Lyme disease should be gone after a maximum of four weeks of antibiotics, and that any lingering symptoms probably are not related to an ongoing Lyme infection. 'Chronic Lyme disease' is not a widely recognized medical diagnosis.

Miserable patients seeking relief, and doctors who have no idea how to help them, have created a culture of extreme mistrust. Patients think most conventional doctors are labeling them as hypochondriacs without making any real effort to help. Most doctors say they can’t help these patients because they do not in fact have chronic Lyme disease. They say other doctors who claim that they can treat chronic Lyme disease are offering false hope, acting unethically, and possibly offering patients treatments that are harmful.

Bill 'Acknowledges Our Chronic Lyme Sufferers'

Gibson’s legislation calls for basic, epidemiological, translational, and clinical research on Lyme disease and other tick-borne illnesses. It requires biennial progress reports from the National Institutes of Health (NIH).

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It also establishes a permanent working group known as the Interagency Lyme and Tick-Borne Disease Working Group. That group would be required to report prevention, treatment, surveillance, and other issues related to Lyme and to represent “a broad spectrum of scientific viewpoints.”

In a statement to Healthline, Gibson said his legislation will force government agencies such as the CDC and the NIH to coordinate their research efforts. 

“The bill acknowledges our chronic Lyme sufferers, gives patients a seat at the table, and establishes a new oversight framework that will allow the patient community and Congress to oversee federal research activities to ensure progress towards cures and solutions for those suffering from chronic Lyme,” Gibson said.

One thing experts do agree on is that so-called chronic Lyme disease falls into a category of illnesses that present as general malaise with no specific diagnosis. Fibromyalgia has only recently begun to shake off that label as new research has emerged about its causes. Those who believe they suffer from chronic Lyme applaud the affirmation that such research has given fibromyalgia sufferers and would like to see the same thing happen for Lyme disease.

Antibiotics Made This Patient Sicker

Laura Garberick, 37, of Battle Creek, Michigan, said she was bitten by a tick in the early 1980s but was never treated for it. She broke out in a rash that doctors thought could be just about anything. Some people bitten by a tick develop a signature bull’s eye rash, but some don’t.

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The cause of Lyme disease was not discovered until 1981, according to the NIH. Children with rheumatoid arthritis who lived and played near wooded areas in Connecticut began to have rashes before showing other symptoms.

Doctors test for Lyme disease using what’s called EIA and Western blot tests. This protocol was established in 1994 in Dearborn, Michigan, at the National Conference on Serologic Diagnosis of Lyme Disease. ILADS provided this link to a PDF of what transpired at the meeting.

The attendees decided which tests would become standard for diagnosing Lyme disease. Critics argue that the group chose tests that are not as sensitive as others offered by private laboratories. However, the CDC warns patients against the validity of "in house" Lyme tests from private companies.

Garberick said a Western blot test in the early 1990s gave her an “inconclusive” Lyme diagnosis. She said she later had a urine test through IGeneX, a laboratory popular among the Lyme disease community but not recognized by many conventional physicians, particularly outside of the East Coast, where Lyme disease is prevalent.

According to the CDC, of 35,000 probable Lyme disease cases in the United States last year, 95 percent occurred in the northern or northeastern parts of the country. However, the CDC also estimates that the number of diagnosed Lyme disease cases may be up to 10 times higher than reported.

Garberick said she has endured joint pain and chronic fatigue for most of her life. For a long time she said she had as many as 10 seizures per day.

She found a doctor who treated her with five months of oral antibiotics, but she said it didn’t help much. She agreed to ramp up to antibiotic injections for another four months, but she became very ill. “I had such a reaction I couldn’t even feed myself — my hands wouldn’t work,” Garberick told Healthline. Long courses of antibiotics are standard for doctors who claim their patients have chronic Lyme disease.

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She said the doctor urged her to continue with intravenous antibiotics, but she declined. She since has found relief with holistic medicine, she said, and doesn’t feel too bad aside from being a bit tired.

“[Antibiotics] are harsh on your system, but when you’re having 10 seizures a day you’re willing to do whatever to get better,” Garberick said.

When Conventional Drugs Failed, She Turned to Integrative Medicine

Ruschelle Khanna of New York City can relate to Garberick. For her, feeling better means walking around smelling like a garlic clove. “I’m pretty smelly,” Khanna told Healthline, explaining she has found relief with a regimen that involves 20 supplements on a given day, including garlic. “But I’d rather be smelly than having seizures.”

Khanna, a 100-pound woman who at one time could lift 160 pounds, said she became ill after visiting Southeast Asia. She does not believe she was bitten by a tick because she never developed a rash. She suspects she may have been bitten instead by a mosquito. Khanna and many other people involved in the Lyme disease movement believe that Lyme can be spread by other insects or even during sex. The CDC says there is no credible evidence to support these claims.

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Khanna said she became so sick she could not hold her head up. Back spasms and severe spinal pain, among other things, made life miserable.

After being treated unsuccessfully by conventional doctors with medications such as Klonopin (used to treat seizures and panic disorders) and Lyrica (used to control pain and seizures and commonly prescribed for people with fibromyalgia), she turned to integrative medicine.

Khanna said she received a Lyme test from IGeneX that came back inconclusive. She said not even her Lyme doctor would say she has Lyme disease, but she added, “Some will say you have Lyme at the risk of their license.”

In New York, legislation to shield doctors who use unconventional treatments for Lyme disease from punishment by medical boards is sitting on Gov. Andrew Cuomo’s desk. The legislation was approved by the state senate four months ago.

A licensed clinical social worker, Khanna bristles at the way doctors treat people for whom there is no obvious and easy solution. “I finally sought out an osteopath who would at least listen to me and not send me to a mental institution,” she said. Khanna says that alternative therapies have allowed her to live without constant, debilitating pain. 

Are Co-Infections to Blame?

Cheryl Savage of Portland, Oregon, said she was also passed from doctor to doctor and pumped full of painkillers, anxiety medications, antidepressants, and muscle relaxers. One doctor, believing she had Grave's disease, ordered radioiodine therapy that destroyed her thyroid.

Frank Rice, president and chief scientist at Integrated Tissue Dynamics (INTiDYN), has conducted research offering insight into the cause of fibromyalgia. He said patients with unexplained chronic illnesses are often forced to hop from specialist to specialist.

“It squirrels them into different diseases that get fought over by different specialists in different turfs, and it really has gotten in the way in terms of what is driving these symptoms collectively,” Rice said.

Savage said she experienced drenching sweats, excessive movement she refers to as “restless body syndrome,” and countless other ailments. She believes she was bitten by a tick in California in 1992. She said she had the trademark rash but it was never treated. 

"I was housebound for the better part of three years and ended up in a wheelchair," Savage said.

She has been diagnosed with Lyme and several Lyme co-infections. Co-infection with other tick-borne bacteria, such as Anaplasma phagocytophilium and Babesia, is relatively common, doctors say. Savage finally found some relief with a Chinese herbalist, but was forced to stop treatment due to its expense. In 2013, her doctor prescribed low-dose naltrexone. She has has decided not to undergo extended antibiotic treatment.

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“He tailored my herbs through pulse diagnosis, with diagnostic equipment, and through careful analysis of my clinical symptoms,” Savage said of her herbalist.

Is Treating Patients Like Giving a Placebo?

Dr. Richard Horowitz is the author of the New York Times best-seller “Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease.” Many patients with Lyme or who believe they have Lyme have rallied around him.

In his book, he presents his own plan for diagnosing and treating Lyme disease. He said existing research has never addressed co-infections, of which there are many strains. “It’s like telling someone who has 16 nails in their foot that since you pulled out one nail, they should feel better,” Horowitz said.

Horowitz and Rice agree that doctors these days, under pressure from health maintenance organizations and other third-party payers, can’t spend the time needed to make a proper diagnosis in these tough cases. Nor do they have a model for it. “We’ve been stuck in this paradigm too long,” Horowitz said.

Rice believes the current environment is particularly cruel to people suffering from chronic illnesses like fibromyalgia.

He compared some doctors who offer treatments for “chronic Lyme” to well-meaning trainers of law-enforcement dogs. “Drug-sniffing dogs are very well-trained, and what they find out is that when they put them to work in the shipping yards, they started getting depressed because it was so rare they found anything. So they purposely planted drugs so the dogs could have success and find it, and wag their tail and get a reward,” Rice said.

Like Horowitz, Rice is in the process of establishing a nonprofit institute to treat people with unexplained chronic illnesses. “Let’s get rid of some of these barriers that are caused by turfs,” Rice said.

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