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Pennsylvania DO’s new book delves into Lyme disease, tick-borne illnesses

Roughly 300,000 Americans are diagnosed with Lyme disease each year, announced the Centers for Disease Control and Prevention this month—an incidence 10 times greater than the agency previously estimated.

Tick

Ticks should be removed immediately from the skin and placed in a jar for later identification. While the longer a tick remains on the skin, the likelier of infection, certain tick-borne diseases can be transmitted in less than 15 minutes, according to Kathleen A. Spreen, DO, MPH. (Photo courtesy of Dr. Spreen)

The author of a just-published book on tick-borne illness, Kathleen A. Spreen, DO, MPH, believes that the new estimate still falls short because Lyme disease and related tick-borne diseases are often misdiagnosed.

Lyme disease doesn’t always present in the same way and co-infections with other tick-borne illnesses frequently occur, complicating the diagnosis, says Dr. Spreen, a Lyme disease survivor. Her college-age son nearly died from a combination of Lyme disease and three other tick-borne infections, including babesiosis, a severe parasitic infection that can cause high fevers, respiratory problems, rigorous chills and anemia.

“If you get one tick-borne disease, it’s difficult enough to diagnose it,” Dr. Spreen says. “If you are infected by two or more pathogens, those pathogens affect each other and the immune system in ways that make it much more difficult to diagnose the disease.”

Dr. Spreen, who lives in southeastern Pennsylvania’s Chester County, which has one of the highest rates of Lyme disease in the country, spent several years researching and writing the more than 830-page Compendium of Tick-Borne Disease—A Thousand Pearls. Designed to be comprehensive, the textbook provides detailed descriptions of more than a dozen tick-borne diseases and the various types of ticks that can cause disease. The compendium covers diagnostic approaches, treatment options, disease management plans and preventive measures.

“My target audience is primarily family physicians, emergency physicians and other health professionals on the front lines of seeing patients,” Dr. Spreen says. “When a patient comes in and says, ‘I have a tick bite, and I’m feeling sick,’ a physician can use my book to go step-by-step through a differential diagnosis and then diagnose the disease and plan the course of treatment. The book does not prescribe how to practice medicine but just outlines the various options.”

The book is also aimed at people who have been diagnosed with or suspect they may have a tick-borne illness. “Dr. Spreen’s book is the greatest amount of information on tick-borne disease in one source that you could ever find,” says Douglas W. Fearn, the chairman of the Lyme Disease Association of Southeastern Pennsylvania, who has been infected twice with Lyme disease. “She did a tremendous amount of work gathering all of the data, talking to a lot of people, reading all of the literature and synthesizing the information into something very readable that can go on a physician’s desk.”

Dispelling misconceptions

First recognized in the 1970s, Lyme disease, or borreliosis, is a multi-system infectious disease generally caused by the pathogen Borrelia burgdorferi. Over the years, physicians have adopted excessively simplistic guidelines for diagnosing and treating Lyme disease, while new variations of borreliosis and other tick-borne diseases have emerged, according to Dr. Spreen.

Misconceptions abound over Lyme disease, she maintains. The first is that Borrelia can only be transmitted by a deer tick. “We know very clearly that other ticks transmit the disease, including the Lone Star tick. Even the dog tick is now a suspect,” Dr. Spreen says.

A second misconception is that a tick must be attached to someone for at least 24 hours to cause infection. “That’s just silly,” she insists. “In all the confirmed cases of Lyme disease that I know of, I don’t know a single person who had a tick in place for 24 hours because nobody would knowingly leave a tick in place for that long. If you discover a tick on your body, you’re going to remove it right away.”

Kathleen Spreen, DO

Through her new textbook and speaking engagements, Lyme disease survivor Kathleen A. Spreen, DO, MPH, aims to shed light on frequently misdiagnosed tick-borne diseases. (Photo courtesy of Dr. Spreen)

Studies performed on mice have shown that after 72 hours, an infected tick will transmit pathogens in 100% of cases. “That transmission rate goes down as the attachment time goes down. But it doesn’t go down to zero,” Dr. Spreen says. “We have many cases in which Lyme disease was transmitted in one or two hours, and certain other tick-borne diseases can be transmitted in less than 15 minutes.”

A third common misconception is that everyone who has Lyme disease develops a bull’s-eye rash, considered one of the telltale signs of the disease. “Probably fewer than 50% of people with Lyme disease have a skin rash,” Dr. Spreen says. “Of these individuals, most have a solid maroon oval rash, while maybe 10% to 20% have a bull’s-eye or target lesion.”

Dr. Spreen’s book also discusses in detail the problem of false negative tests for Lyme and other tick-borne diseases because, she says, laboratories don’t have sufficient understanding of the pathogens involved.

In addition, even when Lyme disease and other tick-borne diseases are correctly diagnosed, they are often ineffectively treated. Too often patients are prescribed doxycyline for less than a month and that’s it, Dr. Spreen says, noting that this antibiotic is not the best solo first-line treatment for all tick-borne infections and it should not be used to treat children.

“Although the majority of people who get Lyme disease do get well on a short course of antibiotics, never to be troubled by the disease again, there is a significant subpopulation of patients—perhaps 20% to 40%—who have ongoing persistent symptoms that can be debilitating,” Dr. Spreen says. “Some physicians say you never need treatment beyond a month. My opinion is that you treat people until they’re better or until they’re functioning well. Sometimes that can take years.

“The earlier that people are diagnosed and treated, the better chance of a successful outcome.”

Nan Crews, DO, of Lebanon, Pa., is one of those Lyme disease sufferers who never had an identifiable rash and suffered for years from fatigue, severe joint pain and brain fog before figuring out that she had the disease.

“It wasn’t until I took some penicillin for an unrelated dental abscess and all of my joint pain went away, that it finally dawned on me that I might have Lyme disease,” says Dr. Crews, who left a busy family medicine practice for a less-stressful career in osteopathic manipulative medicine.

Dr. Crews, who treats Amish families via house calls, frequently urges patients who have Lyme disease symptoms to get tested for the disease.

“Lyme disease is subtle and variable,” Dr. Crews says. “And when people have co-infections, they get very sick. Many people are being diagnosed with Parkinson’s disease, multiple sclerosis and Alzheimer’s disease when they really have tick-borne illness.

“Kathy Spreen’s book is desperately needed.”

cschierhorn@osteopathic.org

7 Responses

  1. Barbara Kubis on Sept. 6, 2013, 9:42 p.m.

    Hello Ms Schierhorn Thank you,for a well written and helpful article addressing the problems surrounding lyme disease and providing valuable information of a newly published book written by Dr. Spreen.

    I have been sick with ongoing complications from lyme and need to set up an appointment with Dr.Spreen.

    If you can forward my email address to her staff or leave me her office number I would greatly appreciate.

    Regards,

    Barbara Kubis
    Barbk517@aol.com
    215 266-3527

  2. myra holt on Sept. 8, 2013, 1:14 p.m.

    Hopefully most of the drs.in the Virginia area will get on board and help with the epidemic in our area.we have alot of sick people here including myself.Thank You for this message.

  3. linda on Sept. 8, 2013, 7:36 p.m.

    Don’t count on VA doctors, they still have their heads stuck in the sand, I live in VA and went to NY to be treated. Just 2 weeks ago a doctor in VA looked at the list of meds I was on and said “no doctor in VA would prescribe these meds”…that’s why I went to NY, last time I will visit that doctor!!!!!!!!!!!

  4. Dolores Claesson on Sept. 27, 2013, 6:56 a.m.

    Thanks to both Dr. Spreen and Dr. Crews for speaking out about their own experiences. My entire family is dealing with lyme and a myriad of co infections. The IDSA or infectious disease society guidelines should be used to line the animal cages at the CDC, NIH, NIAID but never to treat ill people. Lyme is a complex and severe illness compromised of many pathogens that can be chronic. In my family alone we have found Borrelia and positive on both ELISA and Western Blot and even with that were misdiagnosed and not considered a positive case here in Florida. In addition one family member has Rocky Mountain spotted fever and the most ill has Borrelia, Babesia duncani, Ehrlichia, Bartonella, BRUCELLA, Coxsackie A and B viruses, reactivation of all herpes viruses and low or weak immune system and low IgA and IgG antibody sub classes. This is a world wide epidemic that has been shoved under the proverbial rug. We need to fess up to the complexity of this disease and then find ways to eradicate all the pathogens. 108 bacteria were found in ticks in Italy and that is the tip of the iceberg.

  5. Susan Fetcho on Sept. 27, 2013, 10:06 p.m.

    I had the pleasure of hearing Dr. Spreen speak tonight. Such a blessing. Clearly, she “gets it.” Complex information presented clearly and compassionately. I bought a book for myself and one for my primary care doc.

  6. James Wilkins on Oct. 6, 2013, 7:21 a.m.

    Will definitely be buying this book – very curious. Long time sufferer but making great progress now. Does anyone have any contact details for Dr. Spreen? I need to tell her about Raintree Formulas Spiro product – works wonders!

  7. Maud Nerman DO on Nov. 9, 2013, 6 p.m.

    I applaud both the article and book shining a spotlight on Lyme. I constantly see it missed in California.Doctors and patients need much more education on the large numbers of people suffering from Lyme and the co-infections.

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