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Lyme Disease: Testing & Diagnosis

Posted on May 2, 2016 at 11:15 am.

Summary: Effective diagnostic testing for Lyme has never been reliable. In the absence of an EM rash, there is no way to reliably and consistently diagnose Lyme disease , acute or chronic, using serological testing (testing the blood). Beyond this, Lyme is difficult to diagnose because fewer than half of all patients recall a tick bite or develop the signature bulls-eye (EM) rash, and routine Lyme ELISA screening test has up to a 60% false negativity. Coinfections also have a high rate of false negativity. Overall, the medical literature on diagnostic testing highlight the need for both and improvement and standardization in blood tests for Lyme disease and coinfections.

If you find a tick on your body or attached to you, REMOVE IT PROPERLY and SAVE THE TICK. Testing the tick for Lyme (and co-infections) is much easier than testing your blood later on. More on this below.

Tick Submission: The Easiest Route of Diagnosis

So, you’ve been bitten by a tick. Now what?

First, remove the tick properly. I know that they’re nasty things, BUT DON’T THROW IT OUT OR FLUSH IT!

Instead, put the tick into a small plastic Ziploc bag with with a moist cotton ball or piece of wet paper towel.

You have the option to send this sample in for diagnostic testing. Remember, it’s much easier and much more accurate to test the tick itself. Here is the company we use:

Ticknology: They’re not free, but they’re affordable.

Diagnosing Lyme: Overview of Blood Tests…And A Litany of Problems

Clinically, Lyme disease is diagnosed based on symptoms: objective physical findings such as EM (erythema migrans, also know as the bulls-eye rash), facial palsy, or arthritis. Lyme can sometimes be diagnosed using serological blood tests. A serological blood test measures levels of specific antibodies in a patient’s blood. The most commonly used serological tests available for Lyme are referred to as a two-tiered test; typically, doctors will order an ELISA antibody test first, and if results are positive, a western blot test will be ordered. Research shows that the ELISA and the western blot are NOT reliable tests; if you look at the research literature on this methodology, the false negative rate is anywhere from 33% to 75%.

This being said, the ELISA and the western blot are still considered the “gold-standard” for diagnosing Lyme disease.

Wait, WHAT??!!

Let’s take a closer look. But first – if you’re simply not in the mood for the following dry-as-hell details about testing, and the problems inherent to the testing available, just read this succinct overview of current testing, from Columbia University Medical Center.

Below, I’ve listed out the detailed reasons why the “gold-standard” testing for Lyme is inadequate.

Measurable amounts of antibodies will not show up for 2-4 weeks after exposure, so if testing happens too quickly after infection, it’s possible to test (falsely) negative.
Spirochete levels tend to peak at 60 days after infection and then drop to low levels in the system. If tested when they are at low levels, many tests may not detect their presence.
Spirochetes can encyst, alter their genetic makeup, and alter their form. This makes testing for Lyme disease difficult. (I know – it sounds like I’m making this up. Spirochetes are creepy and smart. For more on this, see here.)
READ THIS:

…a certain percentage of people are lucky enough to mount a robust antibody response and then that shows up on the blood test. A significant amount of people are not. And it also has been shown that the longer you’re sick with this and the longer it’s been since you were actually exposed, you’re actually less likely to show an antibody response because of the way the bacteria can evade the immune system. These are what are called stealth pathogens, and they’re actually remarkably well designed to persist and to hide from the immune system. So after a while, your body kind of gives up and stops making antibodies…

So the two-tiered testing has a pretty high false-negative rate. And if you do sort of make it through the first gate and you have a positive ELISA and then you do the Western blot, the CDC has set up this criteria wherein certain antibodies that you’re making are considered specific, and certain other ones are not, and they require that you have a certain pattern and a specific number of these different antibodies in order to qualify for a positive test. And there’s a lot of controversy about which ones they chose and which ones they didn’t. Back in the ’80s, they had developed a Lyme vaccine, which has been since taken off the market because of some fairly severe side effects that people were developing, but they changed the test once they did that, and they excluded certain bands which would have been positive as a result of the vaccine.

…And the other problem with the test is that there’s one kit that’s used that has been approved by the FDA and the CDC, and that kit has one strain of the bacteria, and it is the Lyme Connecticut strain. Worldwide, there are probably 300 different strains of this bacteria, and some really interesting cutting-edge research is coming out of California as we’re seeing what were thought to be only European strains. We’re seeing them showing up here. So Borrelia bissettii, Borrelia miyamotoi, and all sorts of other Borrelia bacteria, like Borrelia hermsii, which causes more of a tick-borne relapsing fever picture, which we’re seeing if we know to look for them. However, that one test kit is not going to pick those up because those antibodies are different. So there are a number of reasons why the testing is problematic. Sunjya Schweig, MD, from this interview

5. The ELISA test tests blood serum for the presence of Borrelia antibodies. Lyme ELISA testing is useless as a screening tool because of its high incidence false negativity. From Harrod’s book, Healing Lyme: “…a significant number of studies have found, and continue to find, that the ELISA test is not all that effective in diagnosing Lyme disease. In general, some 40 percent of people known to have Lyme (because of EM rash) test negative for Lyme infection with ELISA. To make this statistic worse, studies have found ELISA to be negative in 35 percent of people in whom a skin biopsy found cultivatable spirochetes.”

6. The Western blot looks for either IgG or IgM, two different antibodies that are produced in response to infection. Western blot evaluation is the best first step in lab evaluation, but it requires knowledge of which bands are reasonably specific for Lyme.

However, it should be noted that “IgM antibodies rise during the third week, peak after four to six weeks and then disappear by week eight – so if you tested after this, they may not show at all. IgG antibodies, which appear between six weeks and three months of infection, can persist for years or decades after successful treatment, and so when tested, people will be found to be positive for the disease even if they do not have it.” -Buhner, Healing Lyme (all of the journal articles are listed at the end of this book)

7. Borgermans et al. (2014) sums up the reliance on two tiered-tested: “There is consistent evidence that the two-tier testing lacks sensitivity, cannot distinguish between current and past infection, cannot be used as a marker for treatment, is often dependent on subjectively scored immunoblots, and is considered expensive.”

8. Given the unreliability of testing, it’s recommended that when diagnosing Lyme disease, practitioners should AT LEAST use a checklist of symptoms along with the western blot assay with at minimum two bands.

“Bands” are borrelial proteins of the same molecular size against which the patient’s blood is tested; the more bands, the more specific the diagnosis. Patients should consider, if not offered, requesting results that include all bands. They should also consider requesting antibody testing for some of the common co-infections like Bartonella and Babesia and Ehrlichia.

9. If you’re being tested with the western blot, have your doctor request a complete list of the bands that react with your blood (many labs simple report “negative” or “positive” and do not provide a list of the bands). In some circles, two bands are considered enough to diagnose Lyme: 41kd and another Lyme-specific band.

10. Borrelia bacteria are very, very slow growing (which is why treatment can take so long). That being said, borrelial organisms are best treated when they’re actively replicating. On average, they replicate once a month, which is different than “normal” bacterial infections.

11. IgeneX, Clongen Laboratories, Advanced Testing Laboratories, and Medical Diagnostics Laboratory are preferred labs for Lyme-literate doctors when ordering a western blot, as they test more bands including bands 31 and 34, which are specific to Borrelia burgdorferi (and are the actual bands the vaccine was made from).

12. This post isn’t definitive in regards to the tests available – there are many. The point of this was to review the most common tests used in attempt to diagnose Lyme disease. Some tests, notably a blood culture that, so far, seems promising, is still being researched.

13. Chronic Lyme and other tick-borne illness is a clinical diagnosis, meaning it is most often diagnosed by a Lyme literate physician based on history, physical exam, and laboratory testing. Because there is no one perfect test for this condition, and the currently available tests each have their own limitations, practitioners must pull all of the information together – history, exam and testing – to make a clinical diagnosis. You can see ILADS treatment guidelines here.

This is the 3rd post in a 4-series piece on Lyme disease. See the last post here.

Lyme Disease: Overview

Posted on May 2, 2016 at 11:05 am.

Written by Lauren Breau

This is the second post in a four part series. If you haven’t read the first post, The Lyme Wars, I’d suggest you start there.

This post gets into the details of Lyme disease. During my research on Lyme, it became obvious to me that understanding Lyme requires embracing complexity. Many people out there, patients and practitioners alike, shy away from a delving into Lyme because it feels overwhelming (and it feels overwhelming because it absolutely IS). This is an attempt to make the info out there more condensed and accessible, but also an attempt to leave no rock unturned. I urge you to take your time with this series of posts. Click on the links and read the research, understand the arguments and the treatment options.

Also, before getting into the details, I want to say one very important thing.

If you find a tick on your body, or on someone else, REMOVE IT PROPERLY and SAVE THE TICK!!! Put the tick in a small plastic bag with a small piece of wet paper towel. Testing the tick is way easier (and way more accurate) than getting tested for Lyme with blood work. However if you start to see the symptoms of lyme disease, its best to get tested to be sure you haven’t caught the disease. See Testing and Diagnosis for more information on this.

Lyme Disease

Lyme Disease (NOT “Lyme’s” Disease) is a bacterial infection caused by Borrelia burgdorferi that can be transmitted to humans and pets by ticks when they bite you (if they are infected). Not all ticks are infected, and even if they are infected, that doesn’t mean they will infect you if they bite you.

There are other tick-borne illnesses that can be transmitted with Lyme, like Babesia, Bartonella and Erlichia, which is why all of the illnesses together are referred to as “tick-borne illness,” because there are more than one. These are also often referred to as “co-infections.” You can have Lyme and not have any of the co-infections, but it is not uncommon to see people with at least one co-infection.

This is from one of my favorite local-to-Maine resources on Lyme, Dr. Kristen McElveen, ND. Her post on Lyme is practical, informative, and simple. See it here.

Borrelia burgdorferi: What’s in a Name?

Borrelia burgdorferi is the name of a particular spirochete; a spirochete is a particular type of bacteria. The word spirochete means “coiled hair” and describes the shape of this bacteria. Spirochetes have been around millions of years longer than humans; in fact, the more you learn about them, you may feel similarly to me, and wonder if they’re more intelligent than humans. (Read on, if you just rolled your eyes.)

There are 15 spirochetal genera and 300 (if not more) different species of spirochetes. Four of the fifteen spirochetal genera have been found to cause human disease: Leptospira and Brachyspira, as well as Treponema (famously, syphilis), and Borrelia (famously, burgdorferi).

Borrelia burgdorferi is the species of spirochete most talked about when discussing Lyme disease.

A quick overview.

Borrelia is the genus, and burgdorferi, the species.
Often Borrelia burgdorferi is written, or referred to as Bb, because who wants to say Borrelia burgdorferi over and over again?
You’ll come across the term ‘borreliosis,’ which means a disease caused by Borrelia bacteria. (‘Lyme borreliosis’ is a more specific term than ‘borreliosis.’)

But wait! It’s important to understand that different species, subspecies, and strains are commonly lumped within Borrelia burgdorferi.

WTF??

It’s why you often see this bacteria referred to as Borrelia burgdorferi sensu lato (sensu lato means “in the broad sense”). In other words, Borrelia burgdorferi sensu lato refers to all the Borrelia that cause Lyme-like disease. Why am I getting into all this detail, you ask?

Stephen Buhner, of the fastidiously-researched, Healing Lyme, makes some compelling points on this taxonomic confusion.

They should more properly be called borreliosis, which simply means a disease caused by Borrelia bacteria…Each of these subspecies and strains possess slight variations on the core genome; all cause slightly or very different symptom pictures…each borrelial species, during infection, produces offspring that have slightly to very different genetic structures. In other words, when you get Lyme disease, you don’t just have one bacterial species in your body making you sick but rather an infectious swarm of similar but not identical genetic variants. This is one of the reasons why antibiotics are less than perfectly successful at treating Lyme infections.

-from Healing Lyme (2nd edition)

The Black Legged Tick: The Most Common Vector of Bb

The best documented route of Bb transmission is by a tick bite, and usually it’s the black-legged tick of the Ixodes genus (Ixodes scapularis and Ixodes pacificus are the most common). For a great resource, see these vibrant photos of different species of ticks. Proper identification is always helpful.

Nymph and adult black-legged ticks can transmit Lyme bacteria. Nymphs, the most likely to transmit Lyme disease, are about the size of a poppy seed. Upon attaching to a host, the tick releases a series of anti-inflammatory chemicals and antihistamines to numb the skin, and secretes a glue-like compound called cementum which helps it stay stuck to the host. After inserting its mouthparts into the host to feed, an infected tick can inject borrelia, and other pathogens, into the bloodstream. For a delightful illustration of this (blech!), see here.

As I alluded to previously, borrelial organisms are clever, and apparently I’m not alone in thinking this. In an article in the New Yorker, journalist Michael Specter interviews Richard Otsfeld, a senior scientist at the Cary Institute of Ecosystem Studies, who has studied Ixodes for over 10 years.

Ostfeld is a thoughtful, soft-spoken man, not unduly excitable. But when he talks about the Lyme bacterium he sounds like a proud parent. “Borrelia is a remarkable creature,” he told me. “It has all my respect.” He went on to explain that the bacterium, after slipping through the tick’s mouthparts, can change its form, cloaking itself in the surface proteins of the tick’s saliva. Then, much like H.I.V., the bacterium hijacks the immune system. “It doesn’t stay in the bloodstream for long,” he said. “Instead, borrelia manages to insinuate itself into parts of the body that have fewer circulating antibodies, where it is harder for antibiotics to reach.”

Nazzzty little things. NAZZZTY!

Lastly – it’s common knowledge that the transmission time from an infected (attached) tick is about 2 days. However, when existing research on this was reviewed, it showed that many factors were involved that affected transmission time, and transmission of bacteria can occur with tick attachment anywhere between 10 minutes and 72 hours.

The Bulls-Eye Rash That May Never Appear: KNOW WHAT’S UP

Lyme disease caused by the bacteria borrelia from a tick bite — A bulls-eye rash. If you have this, you have Lyme disease. REMEMBER – not everyone gets the rash, and sometimes the rash is atypical in appearance.

If you are infected, symptoms appear anywhere from 2 to 30 days after you’re bitten. Early symptoms are flu-like (fatigue, aches, fever, etc.) Some people develop a distinctive bulls-eye rash (erythema migrans, often referred to as EM), but some studies show that this occurs in less than half of infected people.

In addition, the rash may not look like a typical bulls-eye rash and may be in an area on your body that you can’t see; an atypical rash, if you have one, will usually occur around the place you were bitten and will often expand over time.

A bulls-eye rash is diagnostic of Lyme disease. Period. Blood testing, in this case, is not required for diagnosis. If you have a bulls-eye rash, anywhere on your body, you have Lyme disease. Treatment should start immediately.

Acute and Chronic Lyme: Symptoms

I got this handout at the 2016 MidCoast Lyme Conference in Wiscasset, Maine; I wish I knew who put it together so I could give that person or organization credit (let me know if it was you!). MidCoast Lyme Disease Support and Education is a great resource, btw. See their website here.

Prevalence and Geography

Borrelial organisms have been around longer than humans. In other words, they ain’t new (and neither are borrelial infections). In the U.S., Lyme has been reported in all 50 states, though it’s most prevalent in the Northeast, Northwest, and Great Lakes area. It’s theorized that the disease has captured our attention more now than ever because of the spike in numbers of people infected.

But why are more people getting infected?

Spikes in infection rates are attributed to population increase and resulting alterations to the physical environment. Climate change, too. From Specter’s article on Lyme in the New Yorker:

Deer are not Ixodes’s most important host, but they have come to symbolize the spread of Lyme, and represent an ecology that has changed dramatically in the past thirty-five years. “Once you have Lyme disease in the area, and once you start to carve up the forest into little bits, and especially when the fragmentation is done by suburban development, you get an increase in Lyme risk,” Richard Ostfeld told me recently when I met with him…”The best host for the tick and pathogens is not deer but white-footed mice,” he said. “And they do beautifully when you chop the forest into bits. They thrive. And competitors do not.”

As for infection statistics, which I covered in some depth in an earlier blog post, The Lyme Wars – let’s just say that infection rates have been grossly underestimated. But to sum it up, here’s Stephen Buhner from Healing Lyme:

In 2004, as I was writing the first edition of this book, the CDC was insisting that only 20,000 new Lyme infections were occuring yearly…this despite the fact that Germany, a significantly smaller country, was reporting 30,000 new infections each year. Still, even then, Harvard researchers were insisting that infections were, at minimum, ten times the CDC number, in other words, at least 200,000 infections per year. In response to tremendous pressure from both researchers and Lyme support groups, in 2013 the CDC altered that figure, finally agreeing that, at least, 300,000 infections were occurring every year in the United States.

It’s argued (convincingly, in my perspective) that every state in the US is endemic to borrelial infections. Endemic = common to that locale.

A quick note of importance: Pets can bring infected ticks into the home. They can also get Lyme disease. See here for more.

Coinfections

Really, an issue that deserves its own blog post.

In sum – an infection transmitted by the bite of a black-legged deer tick infected with Bb is often complicated by coinfections. Coinfections are other bacteria, protozoa, and viruses carried by the same tick. Because some of these other diseases are caused by protozoans or viruses, not bacteria, antibiotics will not help. All infections must be treated for you to get well.

When you think of Lyme disease, therefore, consider a potential coinfection/coinfections as a rule. The most common causes? Bartonella, Babesia, Anaplasma, Ehrlichia, and more recently, Borrelia miyamotoi. (They all have their own distinct clinic symptoms, as well, so diagnosing coinfections can be tricky.)

For more on coinfections, see here.

Removing Ticks

And what should I do if I get bit? See here for a great animation.

Here, for the real thing.

And don’t forget! SAVE THE TICK! A natural reaction of disgust is to toss it to the ground with the desire to squash it into oblivion. Don’t do that. Put it in a sealed plastic bag with a lightly damp cotton ball (no alcohol); it may be more than helpful for you to have in the next month. Date the plastic bag and keep for at least 6 weeks.

Side note: Though there is limited research on this (well, there is some research on andrographis as an antibacterial herb), Stephen Buhner recommends applying andrographis tincture after removal of a tick and then covering that area with a green clay pack (simply mix green clay powder with an equal amount of water, apply, and cover). Buhner reports great success with this approach (though admittedly, at this point reported successes are only anecdotal). I carry a small, portable tick first-aid kit with me; it has a stainless steel tick remover, a couple of Band-Aides, a little container of green clay, and a small tincture bottle of andrographis (Andrographis paniculata).

Prevention

Of utmost importance, so familiarize yourself.

Here’s a printable info sheet about tick prevention from The Lyme Alliance of the Berkshires. Also, see here. And here.

Does Chronic Lyme Exist?

It’s a persistent, controversial question. My opinion (based mostly in research, but affected by clinic experience) is YES. Because I already wrote about this in detail, please see The Lyme Wars for more on this (including links to much of the research that helped me form my personal approach).

Are all the questions answered? Nope. Does more research need to be done? Absolutely. Are the politics still raging on? Sigh….yes. Would you like an unbiased, succinct summation of these issues, from Columbia University Medical Center?

Great! See here.

In short, Lyme infection can lead to severe illness and disability in some people. It can affect any system of the body. Lyme can cause (but is not limited to) extreme fatigue, arthritis in any joint, neurological problems, psychiatric problems, cognitive problems, ongoing headaches, muscle pain, and vision and hearing problems. No two cases of Lyme disease are the same; it should be considered, and is, difficult to diagnose.

Remember this: The diagnosis of Lyme disease is based on a clinical presentation; the laboratory can support or confirm the diagnosis, but it cannot rule it out. For more on testing and diagnosing Lyme, see here.

Left untreated, or under-treated, Lyme disease can persist of years, even a lifetime.

This is the 2nd post in a series of four posts. For the next two posts, see:

Lyme: Testing & Diagnosis

Lyme: Treatment Options & Resources

The Lyme Wars

Posted on May 2, 2016 at 11:00 am.

Written by Lauren Breau

…In Which Lauren Explains the Length of this Blog Post

So, first lemme explain.

Though I try hard to keep my blog posts to a small-coffee-length, I quickly learned during my research on Lyme that to talk about the disease without acknowledging its controversial history is a waste of time. If you want to know about Lyme disease with any intimacy, you must understand its complexity as a diagnosis, as a disease, and as an organism. The more people who can hold a nuanced discussion about Lyme disease, the better off we’ll be.

That being said…

In the world of medicine, there’s nary two words uttered that stir a stronger response than Lyme disease, especially here on the East Coast. Unfortunately, reactions typically include confusion, distrust, fear, and frustration, especially if the conversation turns to chronic Lyme disease (chronic Lyme disease is considered a constellation of persistent symptoms in patients with or without evidence of B. burgdorferi infection). While there is (some) agreement on the optimal treatment for early localized Lyme disease, there is considerable controversy over the existence, prevalence, diagnostic criteria, and treatment of chronic Lyme disease.

Sadly, this controversy isn’t contained to backyard chats over black bean burgers and strawberry lemonade, but rages within the field of medicine and divides patients and practitioners alike. Worst of all, it makes it difficult for patients to get guidance from their primary care practitioner if they suspect they’ve contracted Lyme and/or a co-infection, or worse, wonder if they are suffering from chronic Lyme.

It’s a discouraging fact: Many health care practitioners are misinformed about the presentation and treatment of both acute and chronic Lyme, and because of this, patients suffer.

But there’s a reason for this misunderstanding. And it’s very, very complex. In fact, it took me over 100 hours of research (journal articles, books, podcasts, blog posts, and talking to other practitioners) to get a handle on the information and to figure out where I stood in the debate. I dreamed about spirochetes, drove to work listening to people tell their personal stories of Lyme disease, and listened to interviews with experts who vehemently disagreed with one another. The term “Lyme Wars” is…appropriate.

There is little consensus even when it comes to diagnosing Lyme. The the one sure diagnostic sign, the presentation of erythema migrans, also known as a bulls-eye rash, DOES NOT always appear in an infected patient. In fact, according to the International Lyme and Associated Diseases Society (ILADS), fewer than 50% of patients with Lyme disease recall any rash at all. Beyond that, some get atypical forms of this rash, but because it’s not the bulls-eye rash, it’s overlooked.

In other words, lots and lots of people who have been infected with Lyme disease go un-diagnosed, as they never visit the doctor. And some, feeling unwell, do see their primary care practitioner, and are also misdiagnosed.

Dog or cat tick invasion - aka Black legged deer tick — The black-legged tick. The most common vector for Lyme disease.

I’ve learned to be cautious about oversimplifying the presentation of acute Lyme disease (also known as “early Lyme”). See here for a list of these signs and symptoms (I’m including this link knowing that many people will default to the CDC when searching for information on Lyme disease).

See here for an even better list.

The Lyme Wars: IDSA vs. ILADS

So, why does all of this controversy exist?

In the past couple of decades, two opposing views have surfaced in treating tick-borne illness. The Infectious Diseases Society of America (IDSA), maintains that Lyme disease can be treated with a short course of antibiotics and that persistent infection is rare or non-existent. In their view, Lyme is hard to catch and easy to cure. Practitioners who follow the IDSA guidelines reject the term “chronic Lyme,” and argue that without biological proof (a positive blood test or the telltale skin rash) the symptoms of “chronic Lyme” are too diverse and too vague. Some speculate that the lingering symptoms could be an autoimmune response to the original infection, or the result of damage to tissues from the original infection. The preferred term for these persistent or lingering symptoms after antibiotic treatment is post-treatment Lyme disease syndrome (PTLDS).

The opposing view comes from the International Lyme and Associated Diseases Society (ILADS). They argue that Lyme disease is an under-reported and growing problem that often fails to respond to standard antibiotic therapy, resulting in a chronic debilitating infection that requires prolonged antibiotic treatment.

To make things more complicated, co-infections, which often accompany the bite of an infected tick, must also be detected and treated appropriately. ILADS uses the term chronic Lyme. They argue that Lyme disease is a clinical diagnosis. From their website:

The disease is caused by a spiral-shaped bacteria (spirochete) called Borrelia burgdorferi. The Lyme spirochete can cause infection of multiple organs and produce a wide range of symptoms. Case reports in the medical literature document the protean manifestations of Lyme disease, and familiarity with its varied presentations is key to recognizing disseminated disease.

The “Discovery” of Lyme disease and Ensuing Debate

The debate over chronic Lyme has been raging since the mid-70s, when a cluster of cases originally suspected to be juvenile rheumatoid arthritis was identified in three towns in Connecticut, including the towns Lyme and Old Lyme (hence the name “Lyme disease”).

Yes. That’s Lyme disease.

NOT “Lyme’s disease.”

To note: What we know as “Lyme disease” has existed for much longer; it’s suspected that the first detailed account of what is now known as Lyme disease appeared in 1764 in the writings of Reverend Dr John Walker after a visit to Deer Island off the west coast of Scotland. Beyond this, practitioners of Chinese Medicine have been writing about Lyme for even longer. More on that later.

08e4fdf7-1b6d-4784-8868-d224dc881485 — Wait, what? You think you might have chronic Lyme disease? Aghhhhh!!!!

The debate peaked in 2006, when the Attorney General of Connecticut, Richard Blumenthal (now a Connecticut Senator) initiated an antitrust investigation into the development of Lyme disease treatment guidelines by the IDSA. The investigation found significant flaws in the IDSA guidelines development process, including uncontrolled conflicts of interest by panel members, a paucity of evidence, over-reliance on the panel’s ‘expert’ opinion, exclusion of competing viewpoints, failure to acknowledge legitimate controversy, and failure to subject guidelines to broad external review or comment.

This paper, titled, “The Infectious Diseases Society of America Lyme guidelines: a cautionary tale about the development of clinical practice guidelines,” published in Philosophy, Ethics, and Humanities in Medicine, is a more detailed look at this antitrust investigation. It’s a fascinating read and the listed references are equally interesting. (Note: The authors of the linked paper serve on the board of directors of CALDA and ILADS, and presented testimony before the IDSA Lyme guidelines review panel.)

The investigation was closed on May 1, 2008, without charges. The IDSA had agreed to submit to review of its guidelines by a panel of independent scientists in 2009. After that? Here’s the summation from Wikipedia:

The IDSA focused on the fact that the medical validity of the IDSA guidelines was not challenged,^[33] and cited mounting legal costs and the difficulty of presenting scientific arguments in a legal setting as their rationale for accepting the settlement.^[34] A journalist writing in Nature Medicine suggested some IDSA members may not have disclosed potential conflicts of interest,^[28] while a Forbes piece described Blumenthal’s investigation as “intimidation” of scientists by an elected official with close ties to Lyme advocacy groups.^[30] The Journal of the American Medical Association described the decision as an example of the “politicization of health policy” that went against the weight of scientific evidence and may have a chilling effect on future decisions by medical associations.^[35]

Problematic Guidelines for Treating Lyme Disease

And don’t think the controversy stops at this (disappointingly) unresolved antitrust investigation. Even the guidelines on how to treat an acute infection are up for debate. From the blog of Kristen McElveen, a local ND who treats Lyme and chronic Lyme:

Currently, the ILADS recommendation for acute Lyme is a minimum of 6-8 weeks of antimicrobial therapy, while the IDSA/CDC is now even recommending 14-21 days. Unfortunately, many doctors are still only prescribing a single dose of doxycycline, or up to a week’s worth, which is not sufficient treatment, even from an IDSA/CDC standpoint.

And guess what? Also problematic are the blood tests for Lyme. Currently, there are no blood tests that can be considered 100 percent reliable. The only reliable, definitive, diagnostic marker of acute Lyme is the bulls-eye rash, and as mentioned previously, many people will an acute infection will not present with one, or the rash may be atypical and therefore missed.

For an in-depth look at the available diagnostic tests, see here.

The Persistence of Lyme Disease After Antibiotic Treatment?

And as for the question whether some people, even after receiving the accepted treatment for Lyme disease (i.e. they took antibiotics), REALLY have symptoms that persist? A study from Johns Hopkins University found that six months after Lyme treatment, 36 percent of patients reported new-onset fatigue, 20 percent reported widespread pain, and 45 percent had neurocognitive difficulties.

Raises an eyebrow, non?
Some people who are going through horrendous pain such as this may look at an alternative to their prescription medications in the form of medical marijuana. Click here to see how this can help you if you are suffering from pain and aren’t getting any relief from your current medication/s.

And wait – check this out. A study done in 2012 showed that after treating monkeys with antibiotics (monkeys that were infected with Bb and showed a disseminated Lyme disease infection) STILL had spirochetes after antibiotic treatment.

In other words: 1). Non-diseased monkeys were infected with Bb, the spirochete that causes Lyme disease. 2.) The monkeys were given antibiotics, which should, according to some theories, have cleared them of Lyme disease. 3.) Non-infected ticks (ticks with no Bb) were allowed to feed from the monkeys. 4.) When those ticks were examined, Bb spirochetes were found.

One of the researches behind this study, Monica Embers PhD, of Tulane National Primate Research Center, was part of a panel on Lyme disease on The Diane Rehm Show. Also on the panel was Dr. John Aucott, assistant professor of medicine, Johns Hopkins University School of Medicine and clinical researcher (who is also the founder and president, Lyme Disease Research Foundation); Dr. Paul Mead, chief of epidemiology and surveillance, Lyme disease program at Centers for Disease Control and Prevention; and Pamela Weintraub senior editor, Discover Magazine and author of “Cure Unknown.”

To hear that episode, see here.

Stephen Harrod Buhner’s book, Healing Lyme, is one of the most informative, well-researched books I’ve come across in my search to learn more about Lyme; the references in the bibliography are extensive, with over 3000 citations. In his first chapter, Welcome to the Lyme Wars, he shares his thoughts on the existing controversy.

Feelings have regrettably reached religious intensities among many. It has become, in most instances, a rather vicious conflict between different groups of specialists, all with differing paradigms, in all possible combinations: medical/medical, medial/herbal, and herbal/herbal. Caught in the cross fire are those with Lyme disease who are trying to understand what is happening to them and struggling to discover how to best deal with it. This is, in my opinion, reprehensible. The point, as too many healers have apparently forgotten, is finding the most effective way to help people heal. The purpose is not to be right about one’s pet treatment regimen or belief paradigm.

A broad review of thousands of peer review journal papers on Lyme disease rather easily reveals that much of the conservative medical world’s treatment is not based on any real understanding of the disease. It is, unfortunately, often based not on evidence or a clear understanding of the disease organisms in question but merely researcher or physician opinion. As Lee and Vielemergy (2011) comment in their review of the Lyme treatment guidelines promoted by the Infectious Disease Society of America (IDSA) between January 1994 and May 2010, “More than half of the current recommendations of the IDSA are based on level III [i.e., personal opinion] evidence only. Until more data from well-designed controlled clinical trials become available, physicians should remain cautious when using current guidelines as the sole source guiding patient care decisions.”

Also, see here for a succinct explanation of the controversy, according to The Lyme and Tick-borne Diseases Research Center at the Columbia University Medical Center. Their mission statement speaks volumes:

The Lyme and Tick-borne Diseases Research Center was established as the first academic research center in the country to focus multidisciplinary research on chronic Lyme disease. In recognition that a growing number of patients experience ongoing or relapsing symptoms after having been treated for Lyme disease, in recognition that diagnostic tests often do not provide definitive information regarding the presence or absence of infection, and in recognition that there are multiple possible mechanisms by which symptoms persist, the mission of this center has a particular focus on identifying better diagnostic assays, better treatments, and a better pathophysiologic understanding of the mechanisms of symptom persistence.

Prevalence of Lyme disease

And at the risk of sounding like a broken record – guess what? The debate does not stop here.

The prevalence of Lyme disease is even controversial. In 2009, the C.D.C. reported 38,000 cases (three times more than in 1991), but many researchers argued that the true number of infections was five to ten times higher than that number. And in fact, in 2013, the CDC changed their estimate.

This particular piece, written by Michael Specter in 2013 and published in the New Yorker, is an attempt at an overview of the existing controversy; in the article, he consults with various Lyme experts who disagree with one another. (In my opinion, the most bullish and unsophisticated of all the people interviewed happens to be the chief of the division of infectious diseases at New York Medical College, and the lead author of the IDSA’s guidelines for Lyme). Near the end of his piece, Specter wraps up his story on Lyme with a captivating but troubling comparison of current day Lyme activism with early AIDS activism.

Meanwhile, the scientists sometimes seem to respond more comfortably to data than to people. Researchers at the N.I.H. are pursing several lines of inquiry, including the possibility of bacterial persistence. The atmosphere resembles that of the early days of AIDS activism, when many of the individuals most at risk lost confidence in their doctors and sought their own medical answers. In the end, organizers of ACT UP and the Gay Men’s Health Crisis became well known for their public protests, but they succeeded for another reason: they did their homework. Nobody was more knowledgeable about the course of H.I.V. infection than the best-informed activists.

What Does the Research Say?

If you want to start reading the research, I’ve found the following open access journal papers to be very informative.

(Of note: Pamela Weintraub’s book, Cure Unknown: Inside the Lyme Epidemic, is a book known for impeccable research and captivating investigative journalism. Weintraub is Executive Editor at Discover magazine whose son became ill with Lyme disease).

Anyway – here’s some research for you.

Berndtson, Keith. Review of evidence for immune evasion and persistent infection in Lyme disease, International Journal of General Medicine (2013) 6:291-306.

The last paragraph of this paper?

Based on well-designed post-treatment animal studies and ongoing delineation of Bb’s mechanisms for host immune evasion and persistence, we can reasonably conclude that some, possibly many, chronic LD patients suffer from symptoms related to persistent infection with Bb. As inevitably happens in the evolution of scientific ideas, new research proves that the reality is more complex than we thought, and the time has now come to move beyond the divisiveness of the past into a more reality-based paradigm for research, education, and patient care. The question is no longer whether LD can survive an antibiotic challenge in order to become a persistent infection. High quality studies show not only that it happens, but they also show how it happens, and why we should not feel surprised that it happens. Our task in the new era is to determine which patients suffer from persistent LD, and to keep pressing for evidence-based wisdom to guide the physicians called upon to treat them.

This paper is also very informative.

Borgermans, L. et al. Relevance of chronic Lyme disease to family medicine as a complex multidimensional chronic disease construct: A systematic review, International Journal of Family Medicine (2014) volume 2014. From this paper:

There is growing and well-documented evidence to the concept of persistent Bb infection in both animals [21–31] and humans [32–41]. Recent evidence shows Bb is able to escape from destruction by the host immune reactions, persist in host tissues, and sustain chronic infection and inflammation, despite aggressive antibiotic challenge [32, 35, 36, 42–44]. An estimated 20% of patients display recurrent symptoms after antibiotic treatment [45]. A recent study showed that, at six months following antibiotic treatment, 36% of patients reported new-onset fatigue, 20% widespread pain, and 45% neurocognitive difficulties without evidence of depressive symptomatology [46]

This is the first post in a 4-part series. The next three posts, in order, are:

Lyme disease: Overview

Lyme Disease: Testing and Diagnosis

Lyme Disease: Treatment Options and Resources