Lyme Disease: Overview

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. 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.

  1. Borrelia is the genus, and burgdorferi, the species.
  2. Often Borrelia burgdorferi is written, or referred to as Bb, because who wants to say Borrelia burgdorferi over and over again?
  3. 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.

lyme stages

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