Lyme Blood Tests Should Not Be Relied On To Diagnose Lyme Disease

(This letter was in response to a 4-part article on Lyme in the The Post Review. It was printed in both the The Post Review (Forest Lake) and the Forest Lake Times).

In his June 25 installment of the three-part series on Lyme disease, The Post Review reporter Jon Tatting seeks the advice of a “regular” doctor, Dr. Paul Post, to represent what most primary care physicians do when considering issues related to Lyme disease. While it may be true that most doctors follow the Infectious Disease Society of America (IDSA) guidelines, there is little scientific evidence for doing so.

If physicians take the time to review the few studies the IDSA used to develop such influential guidelines, they will find they rely on scant evidence and faulty research.

Fortunately for Minnesotans menaced by a high risk of contracting Lyme disease, there are physicians who have taken the time to parse the few studies that exist and have determined them lacking.

Dr. Elizabeth Maloney is one such doctor. A family practitioner in Wyoming, Minn., Dr. Maloney came to realize that the multiple symptoms of Lyme disease – which often begins with severe fatigue, headaches, migrating muscle and joint pain and can progress to nerve, brain and neurologic problems – may persist after IDSA-recommended short course antibiotic treatment. She became concerned about the divide between patients’ experience of Lyme disease and the medical description.

“Patients were saying, ‘We’re not getting better,’” while doctors were hearing in lectures and reading in standard references that they should be cured, said Maloney.

There is ample evidence that calls into question the IDSA guidelines, and readers can find published challenges from the recent guidelines review on mlasg.com. However, I will focus on what the medical community takes for granted, that the standard blood tests are adequate to diagnose Lyme disease. They are not.

“Discussions on testing must take into consideration what stage of disease one is dealing with,” says Dr. Maloney. “Testing, while appropriate for late Lyme, is not recommended when evaluating patients with known tick bites or early Lyme disease.”

Lyme blood tests measure the level of antibodies directed against the bacterial agent of Lyme disease, Borrelia burgdorferi (Bb); this is an indirect indication of exposure to the bacteria. Antibodies develop two to six weeks after infection, so tests done early in infection may be negative, even when Bb is present, Maloney said.

“With regards to late Lyme disease, available tests perform well if the patient has Lyme arthritis, but not if they have neurologic Lyme disease,” she said. “For example, the first-step test, called an ELISA, misses many patients with Lyme. A study on the standard tests done by the CDC (Centers for Disease Control and Prevention) demonstrated that the C6 ELISA missed 40% of patients with disseminated, early neurologic disease and 27% of the patients with late neurologic Lyme. The follow-up test, called the Western blot, misses late neurologic disease 28% of the time. Because the two tests are done in order and only ELISA positives have follow-up testing, this sequence can be expected to miss 47% of the patients with neurologic Lyme.”

So, it is wrong to suggest that a negative test result means a person doesn’t have Lyme disease.

Lyme is a clinical diagnosis based on a patient’s exposure to deer ticks, symptoms and exam findings, according to the International Lyme and Associated Diseases Society (ILADS). ILADS, unlike the IDSA, bases its recommendations on decades of research and thousands of case histories, not only from the U.S., but from around the world.

The fact that most physicians follow the IDSA guidelines is not a good reason to continue doing so. There are countless examples in history when the mainstream was slow to adopt evidence-based therapeutics.

“One of the most striking examples involved a physician in Austria who tried to convince his colleagues that hand-washing prevented death by ‘childbirth fever.’ In the decades that his evidence was scorned, women died needlessly,” Dr. Maloney said.

She also reminds readers that “science and medicine are not based on majority rule; they are based on evidence. Patients and their physicians should be free to examine the evidence and free to act on their conclusions rather than blindly trust restrictive guidelines which fail to serve a large number of patients with Lyme disease.”

Lyme Disease Season: Time to Dispel the Myth

(this article was first published on MinnPost on April 16, 2010)

Myth: Lyme disease is hard to get and easy to cure. Fact: Tens of thousands of Minnesotans got Lyme disease in the past 10 years, and very few of them will EVER be cured. At least, not before the mainstream medical establishment and Lyme disease specialists stop arguing and figure out how to treat it.

Lyme disease is spread by deer ticks, which are expanding their range in the state. According to the Minnesota Department of Health, one in three deer ticks carry the bacterial agent of Lyme disease, Borrelia burgdorferi (Bb). In high-risk areas of the state, such as Crow Wing and Washington counties, it’s two out of three. Climate change affects both their range and their dormancy; as the cold season gets shorter, the tick season gets longer. Deer, rodents and birds can disperse these blood suckers just about anywhere, so even city-folk are a risk. Indeed, the Metropolitan Mosquito Control District has found deer ticks in each of the seven metro counties.

I don’t say this to breed panic, but to get people to sit up and take notice: you are a tick bite away from getting Lyme disease. And very few doctors in the state truly understand or are willing to treat Lyme disease aggressively. A recent Minnesota Board of Medical Practice resolution may change all that.

Last month, the medical board voted on a 5-year moratorium from investigating doctors who treat chronic Lyme disease with long-term antibiotics, unless a complaint is filed against them by the patient or their guardian. The board agreed with Lyme specialists and activists that the science is unsettled, that much more evidence needs to be gathered in the treatment of the most common vector-borne infectious disease in the country (MN ranks 8^th for reported cases). Doctors are still responsible, of course, for informed consent and conscientious, evidence-based medicine.

Inadequate diagnostic tests, flawed studies that inform prevailing treatment guidelines, and ignorance about what the infection does in the body, result in misunderstandings about the diagnosis and treatment of Lyme disease.

After a person is infected through the bite of a deer tick, Bb doesn’t stay long in the blood stream. It burrows into tissues and cells, sabotaging multiple systems along the way. This is why different people react with a varying array of symptoms. The tests are designed to detect antibodies to the bacteria in the blood, not the bacteria itself; for this and many other reasons they cannot be relied upon to prove the existence (or absence) of Bb. Lyme specialists, including those from the International Lyme and Associated Diseases Society, advocate a clinical diagnosis, taking patient symptoms and environmental history into account. Unfortunately, if the person who is bitten waits for symptoms to manifest, they are already infected.

The prevailing guidelines for diagnosing and treating Lyme disease are the work of the Infectious Disease Society of America. They claim, despite evidence to the contrary, that a single oral dose of doxycycline will “cure” a bacterial infection – even one that has likely spread throughout the body, including the heart and/or brain. Studies on animals have shown Bb can persist beyond this recommended treatment. Based on her review of the scientific evidence, the Minnesota Lyme Action Support Group medical advisor, Dr. Elizabeth Maloney, recommends at least 20 days of 100 mg doxycycline (for adults who can tolerate it) immediately after being bitten by a deer tick in a high-risk area (see map). If treatment is postponed after the bite, longer, more aggressive therapy should be discussed and decided upon between the patient and his or her Lyme specialist.

Thanks to the MBMP resolution, doctors who care for Lyme patients won’t worry about losing their license in the process.

Summer, Fall, Winter and Tick Season

(This article was originally published in the spring, 2010, issue of "Tree Farming for Better Forests")

Minnesotans like to joke that we have two seasons: Winter and Road Construction. I suggest we rename the second season Deer Tick Season. Deer tick season runs from last thaw to first frost, roughly April through November. This season coincides with some of our most joyful outdoor activities (gardening, hiking, bird watching) and our most loathed (yard clean-up, brush clearing, raking). Partaking in these pleasures and chores places us directly in the path of deer ticks, which carry Lyme disease, a potentially devastating illness, both for your health and your pocket book.

Lyme disease is the fastest-growing vector-borne infectious disease in the county. The following paragraphs are intended to keep you healthy by arming you with vital information for the coming deer tick season. You’ll learn how to landscape for a tick-free yard, how to spot a deer tick, and what to do if you get bit.

While deer ticks are found across Minnesota, ticks in the colored swath have been found to have high incidence of Borelia burgdorferi (Bb), the bacterial cause of Lyme disease.

LANDSCAPING

Deer ticks get their name from one of their favorite hosts, but they can also be carried by rodents and birds, allowing them to be dispersed almost anywhere. When not attached to a host, they prefer to hang out in shady, wooded areas, clinging to shrubs and tall grasses, waiting for their next meal ticket to pass by – possibly you or a member of your family. With this in mind, clearing the perimeter of your property is the first step to keeping ticks at bay. The Tick Management Handbook suggests clearing out shrubs and ground cover from the edge of your property and installing a three-foot buffer of gravel or wood chips. The buffer will keep you from brushing against the taller grass or shrubs while mowing. If you have a jungle gym or other yard furniture, install it as far from the wooded area as possible, and consider spraying the area with an insecticide that kills ticks.

Grass should be kept mowed; deer ticks that make their way onto a shorn lawn, especially if it is in a sunny patch, are likely to dehydrate without shade to protect them. To discourage deer from meandering into your yard, consider a deer fence or deer-resistant plantings. Ask your local nursery for suggestions on native, non-invasive plants that are distasteful to deer. To kill deer ticks on mice and other small rodents, set out toilet paper tubes filled with permethrin-soaked cotton balls that mice carry back to their nests, killing all ticks in the horde. If your pets are like mine, they will think these tubes are fun to play with, so put them where your pets and children cannot reach them.

Now that winter is over, you can discard the full body armor in favor of lighter, more skin-revealing attire, right? I leave it up to you to weigh the discomfort of covering your skin with clothing against the potential health risk of covering your skin with insecticide. Many people compromise by using a combination. Bug spray containing 30-40% DEET is recommended by the Tick Management Handbook for tick bite prevention. Keep in mind that coverage should be thorough; ticks will simply crawl to a spray-free zone on your body to feed. Clothing can also be made tick-repellant with the use of permethrin. The chemical bonds to clothing and can provide another layer of protection that kills ticks on contact. It can last on clothing and other outdoor gear (tents, furniture, etc) for several weeks, through at least one washing. You can find information on Minnesota-manufactured tick repellant products at buggspray.com.

TICK ID

However you choose to enjoy your day in the great outdoors, be sure to end it with a thorough tick check. Gather pets and other family members and make a game of it. Here’s what you’re looking for:

1 in 3 deer ticks in Minnesota carry the bacteria that cause Lyme disease, Bb; in high-risk areas, it’s 2 in 3. Some ticks also carry other infections, such as bartonella, babesiosis, and human anaplasmosis, which complicate an already complex disease.

If you find a tick, don’t freak out!.

With a pair of tweezers, grab as close to the skin as possible and pull straight out. Don’t do anything to irritate the tick; twisting it or using a lubricant such as petroleum jelly or nail polish remover can cause it to spit, which is exactly what you DON’T want to have happen. Place the tick in a plastic bag or jar to take to your doctor.

I’VE BEEN BITTEN, NOW WHAT?

If you have been bitten by a deer tick, go immediately to your family physician to request a dose of antibiotics. If you don’t have the evidence (the tick), you will need to tell your doctor where you were when you got bit and describe the culprit. Doctors in Lyme-endemic areas may not need to be told twice that you have been exposed to the disease. However, hundreds of Minnesotans report that they have difficulty convincing doctors that the threat of Lyme is real and that timely and appropriate treatment is required to prevent the illness. I only say this to prepare you to be persistent in requesting antibiotic therapy to keep Lyme or a co-infection from manifesting.

Dr. Elizabeth Maloney, a family physician who has extensively studied Lyme disease and now educates health-care practitioners on this topic, recommends that anyone bit by a deer tick, especially in the high-risk areas of Minnesota, request 20 days of 100mg doxycycline, provided they are able to safely take that medication. Studies in mice have shown that Bb survive shorter treatment times, such as the single oral dose of doxycycline that is recommended in prevailing guidelines. This antibiotic and dosage is not recommended for children under 8 or pregnant women; amoxicillin may be appropriate in those cases.

Dr. Maloney cautions against guessing how long the tick was attached. Some studies suggest that a deer tick must be attached for at least 24 hours to transmit Bb. However, if the tick has fed on something or someone else before it bites you, it could already have Bb in its saliva and transmit it to you immediately. Some doctors believe that if you don’t have a rash at the bite site, you haven’t been infected. No necessarily! Only 70% of people who get Lyme disease ever develop a rash. Incidentally, the most common Lyme rash is oval and uniformly colored; the bull’s eye pattern occurs in only 10-20% of all Lyme rashes. Above all, you must not agree to “wait and see.” Once the flu-like symptoms of early Lyme disease appear, rash or no, you have missed the opportunity to ward off the disease. Stick to your guns, and don’t leave the doctor’s office without the prescription.

For more information on Lyme disease and prevention, visit:

• Minnesota Lyme Action Support Group: www.mlasg.com
• International Lyme and Associated Disease Society: www.ilads.org
• Lyme Disease Association: www.lymediseaseassociation.org

Sources:

“Tick Management Handbook”

http://www.cdc.gov/ncidod/dvbid/lyme/resources/handbook.pdf

“Challenge to the Recommendation on the Prophylaxis of Lyme disease” http://www.ilads.org/lyme_disease/written_testimony/5%20Maloney-Prophylaxis.pdf

“Active Infection: Clinical Definitions and Active Persistence”

http://www.mlasg.com/files/Active_Infection_Clinical_Definitions_and_Evidence_of_Persistence.pdf