Is the Medical Community Behind the Times When It Comes to Treating Lyme?
Lyme disease has been recognized in the United States for more than 40 years, with about 400,000 new cases occurring in 2015, according to the Centers for Disease Control and Prevention (CDC). Nineteen tick-borne diseases now affect Americans, and one tick bite can cause more than one disease. A recent CDC study uncovered that ticks that cause Lyme disease are found in 50% of continental US counties.1In addition, according to the results of a large Johns Hopkins University study, as many as 36% to 63% of patients with Lyme disease go on to develop chronic symptoms (posttreatment Lyme disease).2
Major problems surrounding Lyme disease today include reliance upon dogma, promoting beliefs people are expected to accept without questioning or doubting, and the use of selective science by many in the medical community, the Lyme “experts,” who often blame the patient, the internet, and treating doctors with divergent opinions for their own lack of successful patient outcomes. They continue to approach Lyme with a “cookbook” approach. Patients are told the symptoms are “in their head,” that they need to stop reading the internet, or parents of patients are accused of Munchhausen by proxy syndrome (ie, making their children sick). These experts neither want to understand why their approach does not work, nor do they want to take the necessary time to understand the disease by researching and reading all the science, not just that which supports their unsuccessful treatment approach. Steeped in dogma, they ignore the fact that Lyme is meant to be a clinical diagnosis using testing as an adjunct.Lyme clinical practice guidelines (CPGs) (eg, Infectious Diseases Society of America [IDSA] guidelines) often used by these physicians to treat Lyme are outdated and not posted on the National Guidelines Clearinghouse (NGC) These guidelines are most often used to deny treatment to patients with chronic disease, and so their current absence from the NGC is beneficial to patients who may need long-term antibiotic therapy and have been denied this through use of these guidelines. The only Lyme CPGs available on the NGC are those adhering to newly revised National Academy of Medicine, formerly Institute of Medicine, standards for guidelines− the International Lyme and Associated Diseases Society (ILADS) Lyme Guidelines,3 which address the usefulness of antibiotic prophylaxis for tick bites, the effectiveness of erythema migrans (EM) treatment, and antibiotics’ role in retreatment of persistent Lyme disease symptoms.
Many physicians solely rely on the two-tiered indirect Lyme tests recommended by the CDC and the outdated guidelines. These recommendations include a positive/equivocal enzyme-linked immunosorbent assay (ELISA) followed by western blot (WB), and the tests that are US Food and Drug Administration (FDA)-cleared (substantially equivalent to a predicate test),4 yet not necessarily approved. To date, the FDA has not been able to provide Lyme Disease Association, Inc., with any information on any FDA-approved test for Lyme, including the original predicate test. According to research in BMJ,5 the two-tiered system, although very specific for Lyme disease (99%)—yielding few false-positives—has a uniformly low sensitivity (56%), missing 88 of 200 patients with Lyme. The current archaic Lyme tests remain unreliable decades later. By comparison, AIDS tests have a sensitivity of 99.5%, missing only one of 200 infected patients.
Additionally, there is no test for active Lyme disease infection, and test interpretation, especially the use of specific bands in the WB (IgM 2/3; IgG 5/10), developed at the 1994 CDC/Association of State and Territorial Public Health Laboratory Directors Dearborn meeting,6 is problematic. Some doctors and researchers believe those bands were selected only to protect the then-in-development Lyme disease vaccine (subsequently licensed and withdrawn over 4 years). Furthermore, the Lyme ELISA used for screening may not react with serum antibodies if at least a month has not elapsed between the tick bite and the test. If antibodies do develop, research in the Journal of the American Medical Association7 has shown that the antigen and the antibody produced by the patient can form a complex. Current commercial tests can only test for a free antibody, not an antibody in a complex, so patients can remain undiagnosed despite having produced antibodies.
Perhaps most noteworthy is that FDA-cleared commercial serological tests are based on one strain of Borrelia burgdorferi bacteria in contrast, for example, to a 2-strain Lyme test developed by one independent Clinical Laboratory Improvement Amendments-approved lab. The recent discovery by Mayo Clinic/CDC of the Borrelia mayonii species in the Midwest, which can also cause Lyme, and the acknowledgement that Borrelia miyamotoi, a spirochete closely related to the relapsing fever bacteria and more distantly related to the Lyme bacteria, causes a Lyme-like disease in the United States, means Ixodes scapularis ticks transmit all three of those bacteria, further clouding the diagnostic picture.
There has been considerable research over the past several years supporting the existence of chronic Lyme, including the discovery at Northeastern University that persister cells are formed by B. burgdorferi.8These cells go dormant when treated with antibiotics, but can grow again after treatment stops. Persisters are found in other diseases as well. Work at Johns Hopkins has also been done on persisters: research in Emerging Microbes & Infections,9 “…identified 165 agents approved for use in other disease conditions that had more activity than doxycycline and amoxicillin against B. burgdorferi persisters. The top 27 drug candidates from the 165 hits were confirmed to have higher persister activity than the current frontline antibiotics.” Additionally, work on biofilms in Lyme, by researchers from the University of New Haven, and published in European Journal of Microbiology & Immunology,10 demonstrated for the first time “…the presence of Borrelia biofilm in human infected skin tissue.”
The results of several animal studies have shown that the Lyme spirochete survives antibiotic treatment for Lyme disease, including a University of California mouse study,11 a Tulane monkey study,12 a Cornell dog study,13 and a National Institutes of Health human xenodiagnosis study.14
As new research continues to unlock persistence mechanisms used by B. burgdorferi, the medical community needs to avail itself of those scientific findings by attending continuing medical education conferences and grand rounds and partaking in preceptorships that foster divergent views. The medical community needs to support further research on why some individuals remain sick. It is imperative that healthcare professionals learn how to change that outcome rather than relying on outdated methodologies that have not benefited patient health.
**Patricia Smith (Pat), President of the Lyme Disease Association, Inc., graduated from Monmouth University. She has been involved with Lyme disease issues for 33 years and is a Member of the Columbia Lyme & Tick-Borne Diseases Research Center Advisory Committee, the Congressionally Directed Medical Research Programmatic Panel on Tick-Borne Diseases, and the Environmental Protection Agency Pesticide Environmental Stewardship Program. She has twice testified before US House Subcommittees on Lyme and is former Chair of the NJ Governor’s Lyme Disease Advisory Council. She has published on and been interviewed for broadcast, electronic, and print media on Lyme and tick-borne diseases.
“We are pleased to provide a much-needed Lyme-specific diagnostic solution,” said Mickey Ramchandani, CEO of Global Lyme Diagnostics. “We look forward to working with the community to advance Lyme Disease screening, awareness and education.”
The GLD Test is based on research by Dr. Richard Marconi, a professor of microbiology and immunology in the School of Medicine at Virginia Commonwealth University in Richmond, VA.
“Like so many researchers in the field, I was receiving an astonishing number of phone calls and emails from patients in distress. The stories were at times heartbreaking,” said Dr. Marconi. “When we realized that recent advances made in our lab could lead to the next generation of Lyme disease diagnostics we seized the opportunity.” “We have been able to identify the appropriate diagnostic antigens that allow for detection of early stage disease. Using novel chimeritope technology, we have constructed diagnostic antigens that are specifically designed to detect Lyme disease strains regardless of their geographic region of origin,” explained Dr. Marconi.
After licensing the technology platform and related intellectual property Global Lyme Diagnostics focused on creating a highly accurate and reproducible solution.
The GLD Test keeps the prescribing by clinicians simple, requiring only a blood draw.
Show 1081: What Do You Need to Know About Lyme Disease?
Lyme disease isn’t always easy to diagnose, and it can cause serious long-lasting damage. How can you be alert for this tick-borne infection?
There’s been a big increase in mouse populations in many places over the past year. As a result, the number of ticks is booming, and you have a greater chance of being bitten when you go outside. Could a bite put you in danger from Lyme disease?
The Basics of Lyme Disease:
Lyme disease is the name given to a constellation of symptoms in reaction to infection with a tick-borne pathogen called Borrelia burgdorferi. The black-legged tick, Ixodes scapularis, is the usual culprit in transmitting this germ. Black-legged ticks feed on white-tailed deer and white-footed mice as well as humans, hence the name “deer tick.”
The infection can produce a rash (though it doesn’t always), along with fever, chills, joint pain, fatigue, headache and flu-like symptoms. If left untreated, Borrelia infection can cause more serious symptoms, including arthritis, pain in muscles and tendons, heart symptoms due to inflammation of the heart muscle and neurological symptoms from inflammation of nerve tissue. Some people also experience brain fog or problems with memory and concentration.
Lyme Disease Stories:
Both of our guests on today’s show are physicians, and both have suffered with Lyme disease that went undiagnosed and untreated for many years. In Dr. Spector’s case, the primary symptoms were heart rhythm abnormalities as the infection destroyed his heart. He eventually needed a heart transplant. (He wrote Gone in a Heartbeat.)
Dr. Rawls also had cardiac symptoms, in addition to fatigue and many other problems. When he finally figured out what was happening to him, he developed a multi-modal treatment plan incorporating herbs to modulate his immune reaction. He also wrote a book, Unlocking Lyme.
Diagnosing Lyme:
While a bulls-eye rash is usually thought of as the signal of Lyme disease, not all target-shaped rashes are the result of Lyme, and quite a few people with Lyme disease never notice a rash. Indeed, some are unaware of having been bitten by a tick.
Lyme disease diagnosis is not as straightforward as the diagnosis for certain other diseases. The laboratory tests need to be interpreted by a clinician who is experienced in the use of two-tiered testing.
When patients feel they need to take control for themselves, one resource is ILADS: The International Lyme and Associate Diseases Society. http://www.ilads.org
There is also more information on this website about other tick-borne infections. We discussed Lyme disease, Bartonellosis and alpha-gal allergy in Show 1003. Show 907 covered Bartonella infections in detail.
This Week’s Guests:
Neil Spector, MD, is an associate professor of medicine as well as pharmacology and cancer biology at Duke University Medical Center. He holds the Sandra Coates chair in breast cancer research. Dr. Spector co-directs the experimental therapeutics program for the Duke Cancer Institute and is a Komen Scholar. His book is Gone in a Heartbeat: A Physician’s Search for True Healing.
The podcast of this program will be available the Monday after the broadcast date. The show can be streamed online from this site and podcasts can be downloaded for free. (We’d be grateful for a review on iTunes or Google Play.) CDs may be purchased at any time after broadcast for $9.99.
Stay on the trail. Ticks hide under moist leaf litter until climbing onto a blade of grass, a twig or branch. Once in dry air they don’t last very long. Open, unshaded areas, well-managed trails, and mowed yards free of leaf litter are less likely to harbor ticks.
Cover up. Before you venture outdoors, cover your body with clothing. Wear a light-colored, long-sleeved shirt, and pants all the way down to your feet.
Be extremely vigilant. Whenever you brush by vegetation, stop and check for the possibility of a tick crawling up your legs or body. Ticks are difficult to spot and some are smaller than a pinhead. Put on reading glasses if you need help spotting a tiny critter.
Treat your pets. All blood-sucking insects carry potential disease-causing microbes. Since pets bring ticks inside, have your pet regularly treated to reduce ticks and fleas.
WHEN YOU COME INDOORS:
Check your clothes for ticks.Tumble dry clothing on high heat for at least ten minutes.
Take a shower. Showering within two hours of coming indoors helps wash off unattached ticks and gives you a chance to thoroughly check your body. Conduct a full body check. Be aware that ticks prefer warm, moist places, so pay special attention to armpits, in and around the ears, back of knees, between the legs, and around your hair.
New Picaridin Repellents Outperformed DEET
Update by Kathy White, MSW, April 3, 2017
To repel ticks and mosquitoes, the CDC website recommends permethrin (an insecticide)on clothingplus DEET or picaridin on exposed skin.Picaridin has been used for decades in other countries and is now available in the U.S. It is less toxic than DEET and is approved for children.
pump spray Sawyer Picaridin20% which lasted 8.5 hours.
aerosol Ben’s 30% Deet Tick and Insect Wilderness which also lasted 8.5 hours.
pump spray Repel Lemon Eucalyptus which lasted 7 hours.
Oil of lemon eucalyptus is not for children under age 3. It can cause eye irritation. Natrapel with 20% picaridin (available at Target) also worked better than DEET. Repel Scented Family Repellent with 15% DEET worked better than Deep Woods Off with 25% DEET, perhaps because of the fragrance. These two DEET products were rated in the top 5. Ecosmart Organic repellent and IR3535 didn’t work too well. Citronella candles and wristbands and the natural oils geraniol, lemongrass, and rosemary didn’t work at all or lasted less than an hour.
Permethrin, an insecticide, repels ticks and insects. If ticks & insects touch it, they won’t bite and will drop off & die. Apply it to clothes (never skin), the outside of shoes, backpacks, tents, & sleeping bags. Follow label directions. Don’t spray it on the clothes of young children who put things in their mouths. For more on Permethrin: http://www.tickencounter.org/prevention/permethrin
Subjects wearing permethrin-treated sneakers and socks were 73.6 times less likely to have a tick bite than subjects wearing untreated footware. Subjects wearing permethrin-treated shorts and T-shirts were 4.74 and 2.17 times, respectively, less likely to receive a tick bite than subjects wearing untreated shorts and T-shirts. On subjects wearing untreated outfits, 97.6% of attached nymphs were alive, whereas signifcantly fewer (22.6%) attached nymphs were alive on subjects wearing repellent-treated outfits.
https://www.epa.gov/insect-repellents/find-insect-repellent-right-you The EPA also has this website; however, they do not endorse any product and rely upon the manufacturer’s honesty. For instance, you can type in time you want to be protected (I typed in 5-8 hours), and insect (I typed in tick). I left all other boxes blank to get the most results. The results were similar to the Consumer Report review, but check it out for yourself, realizing that there often is not third party testing.
The steps to safely removing a tick start with a pointy tick removal tweezer. Most household tweezers have large, blunt tips in comparison to ticks. This only increases the chances of tearing the tick and spreading possible infections into the bite area.
A study at Ohio State University in 1995 compared the Pro-Tick Remedy to two other tick removers and tweezers. www.tickinfo.com The researchers found that the Pro-Tick Remedy was better than tweezers & the other tick removers at removing ticks with all the mouthparts intact, and did the best job of removing the cement. (Ticks inject “cement” to hold the tick in place while feeding. The cement isn’t known to cause health problems, but it can cause irritation until the body absorbs it. It causes a hard lump until it is absorbed, which can take a few weeks or more.)
The report said, “While others (tick removers and tweezers) broke the tip of the hypostome and chelicerae (mouthparts) in at least one tick, the Pro-Tick Remedy succeeded in removing all 51 ticks without damaging any mouthparts . . . the Pro-Tick Remedy removed the most … cement while causing the least damage.”
A second study included Lone Star ticks, which have a longer hypostome and are harder to remove. All the tick removers tested did very well at removing adult ticks & were much better than tweezers for the tiny nymphs. The Pro-Tick did better than any other tool tested at removal of nymph ticks. It removed all the mouthparts of 72% of the Lone Star nymphs. Tweezers only removed all the mouthparts in 4% of the nymphs. The researchers concluded that tweezers should never be used for removing tick nymphs. The Pro Tick Remedy is sold at www.scs-mall.com, or you can buy it by sending a check for $6.50 payable to “Lyme Association of K.C.” to: Lyme Association of Kansas City, P.O. Box 25853, Overland Park, KS 66225.
There’s been a big increase in mouse populations in many places over the past year. As a result, the number of ticks is booming, and you have a greater chance of being bitten when you go outside. Could a bite put you in danger from Lyme disease?
Madison Area Lyme Support Group 