What’s The Connection Between Lyme Disease & Chronic Fatigue?

Your fatigue levels could actually be spread by a weird little parasite known as ticks!

Lyme disease (which is quite different from lime disease) is an infectious disease caused by a bacterial species known as Borrelia. (1) You probably associate Lyme disease with ticks – and that’s because ticks are the primary means in which the Borrelia bacteria are spread.

While there are no exact symptoms that makeup Lyme disease, fatigue – specifically, chronic fatigue – is probably one of the more consistent ones. Those low energy levels of yours, the root cause could very well be an infection you don’t know you have!

Even if your doctor suggests you tested negative for Lyme, you could still have the infection. Properly diagnosing Lyme disease is no easy task. Read on to learn everything you need to know about Lyme disease.

The very strange symptoms of Lyme disease

The symptoms of Lyme disease are vast and non-specific. This often leads to multiple misdiagnoses and improper treatment(s). Some of the more common symptoms include: (2)

• Fever
• Headache
• Fatigue
• Joint pains
• Neck stiffness
• Tingling sensations in your extremities

Some consider the hallmark sign of Lyme disease to be the bullseye rash (also known as erythema migrans). But this only occurs in 70-80% of people exposed to Lyme. (3) The other 20-30% of people may not know they have been infected.

Lyme is often referred to as the great imitator. It received this name because of the large number of symptoms that seem to mimic other illnesses. Chronic Lyme disease often gets misdiagnosed as other strange conditions. Some of the more common diagnosis/conditions include:

• Chronic fatigue syndrome
• Fibromyalgia
• Irritable bowel syndrome (IBS)
• Lupus
• Multiple Sclerosis (MS)

This list is not comprehensive. These conditions are only some of the more common conditions that may actually be an undiagnosed infection of Borrelia. Click here for a more comprehensive look at conditions that are commonly misdiagnosed.

Even if your symptoms fit, that doesn’t mean you have Lyme disease. The first step in proper diagnosis is a proper medical history. That seemingly innocuous bite you got while hiking, that could be from a tick!

Have you contracted Lyme disease?

In humans, Lyme disease is primarily spread through bites from infected ticks. In the United States and Canada, the primary species of Lyme carrying ticks are known as Ixodes. These ticks harbor the Lyme causing bacteria known as  Borrelia burgdorferi and Borrelia mayonii. (4, 5)

In Europe, Lyme carrying ticks are known as Ixodes ricinus. To make matters worse, Europe has two additional strains of Lyme-causing Borrelia bacteria –  Borrelia afzelii and Borrelia garinii. (6)

Ok, I’m sure all of you are familiar with Lyme being transmitted through tick bites. But did you know that Lyme disease could be transmitted sexually?

At the time of my writing, there is still a great deal of controversy between camps about how Lyme disease can be spread. The CDC is quite firm in their stance that the only way in which Borrelia bacteria is transmitted to humans is through tick bites. (7) They will admit that its possible for Lyme disease to be transferred through the blood but they have not seen any cases of this occurring to date.

Granted, the research journals the CDC quotes are from 1999 and 2001. (8, 9, 10) A lot can change in the understanding of a disease in twenty years, and new research is suggesting that Lyme disease may be more likely to spread in the bedroom than on the hiking trails.

I want to be clear that the CDC’s official stance on Lyme disease being transferred sexually is that the Lyme disease spirochete is not compatible with this route of exposure. (11) But more recent studies have shown positive Lyme samples in both semen and vaginal excretions. (12) Perhaps most startling is that identical strains of Lyme disease were found in married couples. (13)

This suggests that Lyme disease may be transferred sexually. Much like every aspect of Lyme disease, more research is certainly needed into accurately determining how it can be spread. It is also hypothesized that Lyme disease could be transferred via breast milk and even across the placenta. (14) But before any firm conclusions are made on exactly how Lyme can and cannot be transferred, we need a lot more research.

When it comes to Lyme disease, the medical community is conflicted. And I haven’t even talked about how Lyme disease is diagnosed.

Why properly diagnosing Lyme is an absolute mess

The most commonly used – and arguably the most inaccurate – way of testing for Lyme disease is something called antibody measurements. These are blood tests which look to see if your immune system has identified the Lyme bacteria and created a recipe to remove it. These recipes are known as antibodies.

Conventional doctors will use one of two tests to determine whether or not you have Lyme disease:

1. Western blot
2. ELISA

Both of these tests are looking for antibodies created by your immune system to the Lyme bacteria. Current recommendations for testing in conventional medical settings recommend starting with the ELISA test. Should that come back positive, it is recommended to run the more sensitive Western blot. (15) The inherent problem with these tests is that they were designed to produce a very low number of false positives. The unfortunate consequence of this is both tests create a very high number of false negative results.

To clarify, in Lyme disease, a false positive occurs when a test incorrectly diagnosis someone who doesn’t have Lyme disease with Lyme disease. A false negative is the opposite. False negatives occur when someone with Lyme disease tests negative.

Both the ELISA test and the Western blot have a high degree of false negative results. To shed some light on how inaccurate conventional testing for Lyme disease is, consider the following…

In 2014, the state of Maine reported 1169 cases of Lyme disease. That works out to approximately 87.9 cases of Lyme disease per 100,000 people. (16) That same year, the province of New Brunswick in Canada reported 5 cases of Lyme disease. (17) An incidence of 0.66 cases of Lyme per 100,000 people.

That’s a 133-fold difference! (18)

This is exceptionally odd considering Main and New Brunswick have nearly identical climates, wildlife, and estimated levels of Borrelia bacteria. (19) Heck, New Brunswick and Maine are so similar they even share a border! The only way there would be a discrepancy of over 100x is if Canadian Doctors failed to efficiently detect Lyme disease. Which is most likely caused by a testing methodology that is woefully inadequate!

Allow me to give you an example of just how inaccurate the testing for Lyme disease is:

Nova Scotia, Canada is currently considered either medium or high risk for Lyme disease with endemic areas increasing in number and size.

To get an idea of the incidence of Lyme disease, 1855 random samples of blood from residents of Nova Scotia were sampled. All samples were first run through the ELISA test. 215 samples came back either positive or equivical (11.6%). The samples were then tested using the Western Blot.

Zero samples came back positive according to the CDCs recommended diagnostic criteria. (19) Zero! In an area that is considered high risk for Lyme and nearly two thousand different samples. Based on the prevalence in Maine, there should have been at least one sample that came back positive!

Clearly, the two-tiered testing method (ELISA + Western blot) is not sensitive enough to accurately diagnose Lyme disease. This is the inherent problem with antibody testing – sometimes your immune system hasn’t detected the infection from Lyme-producing bacteria. If your immune system fails to recognize an invading bacteria/virus/parasite etc. you’re not going to find any antibodies in your blood. And this is exactly what is seen all too often in Lyme disease.

So, what sort of testing should be used for accurately detecting Lyme disease? 

How to accurately diagnose Lyme disease

Ok, by this point in the post, I hope you’re far more cautious about conventional testing for Lyme. Just because your family doctor tells you Lyme antibodies were not found in your blood, that does not mean you don’t have Lyme disease.

Now, I’m going to complicate testing for Lyme disease even more.

Those antibodies that show up in your blood, they can last for a number of years. (20) Meaning that you could have been infected with Lyme disease at some point in time but your immune system warded off the infection. But your immune system is still producing antibodies – which is why your test comes back positive. This could lead to an intense treatment protocol that may not even be necessary.

A better way of testing for Lyme disease is through something called an EliSpot. EliSpot testing measures T-lymphocytes. T-lymphocytes are a subtype of white blood cells that play a central role in cell-mediated immunity. Cell-mediated immunity does not rely on antibodies to defend your body from invaders. Instead, lymphocytes that are unique to an invader are used for defense.

As you may have surmised, there are specific T-lymphocytes that your body uses for fighting the Borrelia bacteria (Lyme disease).

Unlike antibodies, if you don’t have Lyme disease, you won’t have Lyme-specific T-lymphocytes in your blood. Which makes measuring these white blood cells one of the most accurate ways to test for Lyme. The EliSpot test is so sensitive that if you only have 1 Lyme-specific T-lymphocyte out of 100,00 the test will be flagged as a positive result. (21, 22) This test is 20x-200x more accurate than the ELISA test. And probably closer to 1000x more accurate than the Western Blot. (23)

To further ensure Lyme disease is being diagnosed properly, a test to run alongside the EliSpot is something called CD57+ cells. CD57+ cells document the degree to which your immune system is suppressed in chronic cases of Lyme disease. If you’ve recently been infected with the Lyme bacteria, your CD57+ cells will remain in normal ranges. But for most people with chronic fatigue syndrome, a chronic Lyme infection is more likely. In chronic Lyme, CD57+ cells will be suppressed. (24, 25)

CD57+ cells are helpful to be run as you work your way through a treatment protocol. If your treatment is working, you’ll start to see an increase in CD57+ cells. This is one of the first markers you can use to determine if treatment is working or not.

But wait, there’s more! Lyme disease often comes with these things called co-infections. Co-infections are other bacterial infections that tend to occur at the same time as Lyme disease. Let’s learn about the co-infections that come along with Lyme disease.

There’s more to the mystery of Lyme disease

Just when you thought you had a handle on diagnosing Lyme, I’m going to complicate things once again. Enter co-infections.

When a tick bites you, she may be carrying more than just the Borrelia bacteria. Fun fact – only female ticks will spread Lyme disease and other co-infections.

Co-infections are other bacterial strains that can be transferred from tick to you through a bite. If you have a co-infection, treating Borrelia is not enough. You’ll also have to identify and treat the co-infections. Some of the more common co-infections include: (26)

• Babesia
  • Babesia is a parasite that closely resembles malaria.
  • Symptoms of babesiosis are similar to those of Lyme disease but babesiosis more often starts with a high fever and chills. As the infection progresses, patients may develop fatigue, headache, drenching sweats, muscle aches, chest pain, hip pain and shortness of breath. (27)
    • Sounds a lot like chronic fatigue doesn’t it?
• Bartonella
  • You may know the Bartonella bacteria as cat scratch disease. But it also can be transferred via tick bites.
  • Early signs of bartonellosis include fever, fatigue, headache, poor appetite, and an unusual streaked rash that resembles “stretch marks” from pregnancy. (28)
• Rickettsia
  • In North America, Rickettsia is commonly known as Rocky Mountain Spotted Fever.
  • Initial symptoms typically include high fever, severe headache, abdominal pain (with or without vomiting), and muscle pain. It often—though not always—includes a spotted rash that begins at the wrist and/or ankles, and spreads outward from there. (29)
• Erhlichia and Anaplasma
  • Ehrlichiosis is a term that describes several different bacterial diseases, one of which is also called anaplasmosis
  • Each is often characterized by sudden high fever, fatigue, muscle aches, headache. (30)

These are the most common co-infections that a tick can transmit to you. Much like testing for Lyme, properly testing for co-infections is complicated. You’ll need to find a Lyme-savvy practitioner to help with proper diagnosis. This is especially so for those with chronic fatigue.

Can chronic fatigue be transmitted through tick bites?

Maybe.

To be clear, chronic fatigue syndrome is a diagnosis based on exclusion. And what qualifies as a positive diagnosis has changed a lot over the past few years. To get a diagnosis of CFS, all the blood markers run by your doctor need to fall with normal ranges.

But how likely was it that your doctor tested you for Lyme disease?

And if he/she did, the way you were tested was likely via the inaccurate testing methods I described. One small study of 210 patients with a positive chronic fatigue diagnosis found that 209 of them (99%) were thought to have been exposed to Borrelia. (31) And when these same patients were treated with antibiotics (the recommended treatment for Lyme disease) 62% had a statistically significant improvement in fatigue symptoms. (32)

Other studies have also shown there to be a significant correlation between Lyme and chronic fatigue syndrome. (33, 34, 35) Though researchers are unsure if CFS develops as a result of Lyme disease or if Lyme disease actually is CFS.

But before you go get tested for Lyme disease, know that there is also research that suggests its not at all connected to chronic fatigue syndrome. Some studies have shown the proteins found in the cerebrospinal fluid (CSF) of those with Lyme disease to be completely different than those with chronic fatigue syndrome. (36) If Lyme caused chronic fatigue syndrome, you would expect to find similar CSF proteins in both populations.

The logical conclusion that you should reach is that Lyme may very well be connected to your fatigue. We’re not exactly sure how or why but there’s a definite possibility they’re connected. If you’ve ruled out everything else, performing an accurate blood panel to test for Lyme could be the logical next step for you.

Now, I want to hear from you!

How has Lyme disease affected your fatigue levels?

How did you get tested for Lyme disease?

Leave your answers in the comments section below!

Want to know more than your doctor about overcoming fatigue?