3 Reasons Diagnosing Lyme Disease is So Difficult

Introduction

Having Lyme disease can be a real challenge, but a misdiagnosis with something else can be much worse. So many people go undiagnosed for many years, while needlessly suffering and being mistakenly treated for something else. This experience happened to me as well, as I went at least 15 years before getting an official diagnosis of Lyme disease.

Unfortunately, this happens all too often, and most of the time it’s an unnecessary occurrence. Getting a proper diagnosis in the early stages of Lyme disease can help prevent a lot of needless heartache. This is so important, because the earlier the diagnosis, the better chance of a successful complete recovery.

Why is diagnosing Lyme such a difficult task?

Well, there are a number of reasons, but here are the top 3

1. Many doctors simply don’t test for it. Even today, with the growing number of people becoming infected with this disease, not just in the US, but worldwide, many doctors still haven’t included Lyme disease testing with their standard diagnostic workup. From my experience, the reason for this is that doctors aren’t being prepared well in medical school to properly test for, as well as diagnose, it.

Lyme disease can present in a number of different ways, while also mimicking many other conditions. This is why it is often called the great imitator. If you don’t understand this, then you may not test for it as a result of missing some of its symptoms. Failure at providing a proper diagnosis often leads to a lot of time wasted treating for the wrong health issue(s), while allowing to the disease to become chronic.

2. The tests said to be inaccurate. The current standard laboratory tests used to diagnosis Lyme disease are the ELISA and Western Blot (known as a 2-tier system). It would be great if using these two tests alone could reliably determine a true Lyme infection, but like anything else, it’s not that simple. These tests tend to have an accuracy issue, many times indicating a false negative, meaning that the person actually has the disease, but tests negative for it. False negatives tend to occur approximately 50% or more of the time while using these tests.

One of the reasons why these tests are unreliable is due to the Lyme spirochete’s ability to hide from your immune system, deep within your tissues. The ELISA and Western Blot rely on testing for antibodies that your immune system makes in response to an infection. Though, if your immune system can’t see the bug, then it can’t make antibodies to it, rending both tests useless in this instance. It’s often called a stealth pathogen for this reason.

As stated earlier, I had firsthand experience with the inaccuracy of these two tests. Fortunately, I found other ways to help determine a true diagnosis of Lyme disease, which I will discuss later in this article. Just know for now that a negative test for Lyme disease does not necessarily mean that you don’t have it.

3. The Co-infection. During the time of initial infection with the Lyme spirochete, whether through a tick bite or some other possible vector, most often it is accompanied by two or more additional microbes, such as bacteria, viruses, parasites, etc. These are often called the co-infections. Though, two co-infections tend to be a conservative estimate. Most people are probably infected with a lot more, but current conventional testing methods are limited in determining many of the possible infections.

Some examples of these infections include: Babesia, Bartonella, Anaplasmosis, Ehrlichiosis, Rocky Mountain Spotted Fever (RMSF), Powassan virus, Q Fever, Tularemia, and Brucellosis, though there can be others, and some that we may not have even discovered yet. Co-infections complicate the diagnosis of Lyme disease because they can cause a number of other symptoms, in addition to the ones that are normally experienced with Lyme disease.

Needless to say, understanding these infections and the symptoms that they cause can be complicated, to say the least. This becomes even more complicated when you factor in the lack of training and clinical experience that most doctors have with these infections, in addition to the misinformation that is disseminated throughout the medical community.

The Drawbacks of the 2-Tier System (ELISA & Western Blot)

To review, currently, the 2-tier system lab tests (from blood samples) being used to help make a diagnosis of Lyme disease are the ELISA and the Western Blot. These tests work by identifying antibodies (proteins made by the immune system to fight this infection) against Borrelia burgdorferi (Bb), a type of bacterial spirochete (based the shape of the bacteria-spiral), which is thought to be the underlying cause of Lyme disease.

The ELISA test is the first test used when testing for a Bb infection. Typically, most doctors order this test by itself to initially rule out Lyme disease. The problem with this system is that the ELISA test tends to miss a number of people who actually are infected with Bb. That means most doctors won’t even order the Western Blot separately unless a positive ELISA test is indicated.

The Western Blot (WB) test tends to be a little more useful than the ELISA test in my opinion, but by no means is it adequate by itself. The WB uses something called bands, or markers, that are associated with Lyme disease. There are 10 IgG bands and 3 IgM bands in all. Don’t worry about what the IgG and IgM are right now, just know that they are used in the Western Blot to help identify whether you have ever been exposed to Bb. The standard method currently accepted by the medical community says that you must test positive for at least 5 of the 10 IgG bands and/or at least 2 of the 3 IgM bands to be considered positive for Lyme disease (see Figure 1 below). Though, this isn’t the only way that this test can be interpreted per the designers of the test, but it is the only acceptable way according to mainstream conventional medicine at this time.

Figure 1

Figure 1:  Above is a sample of a Western Blot blood test result. Notice that there are 7 reactive bands out of the 10 IgG bands (18-93), indicating a positive test. In addition, there are 2 reactive bands out of the 3 IgM bands (23-41), and by itself indicates a positive test. The sample demonstrates a positive test for an immune reaction to the Lyme spirochete Borrelia burgdorferi (Bb). Unfortunately, many people infected with the Borrelia burgdorferi bacterium will not have such an obvious positive test result.

An alternative way to help determine if you have ever been exposed to the Lyme spirochete is to look for certain individual bands in the WB test. Some of the bands are more specific to the disease than others. That means it is possible, if you are positive for a single specific band, to have been infected at some point with the Lyme spirochete, even if you didn’t test positive for either 5 of the 10 IgG bands or 2 of the 3 IgM bands. Once again, most doctors aren’t aware of these specific bands and their association with a Bb infection. You would have to find a Lyme Literate Naturopathic Physician (LLNP) or a Lyme Literate Medical Doctor (LLMD) in most cases to acknowledge this method of evaluation.

Western Blot Bands – Some Are More Useful Than Others

Some examples of the bands that are said to be highly specific to Lyme are: 23-25, 31, and 34. Additionally, the following bands are thought to be specific: 18, 22, 30, 37, 39, 88, and 93. The rest of the bands have not demonstrated a specific association with Lyme disease. Regarding the latter, certain bands tend to react to most kinds of spirochetes, not just Borrelia burgdorferi, and are considered non-specific. For instance, syphilis is caused by a type of spirochete (bacteria) that is different from the Lyme spirochete, but may cause some of the non-specific Western Blot bands to be positive, for example, band 41. Even so, these bands may still be helpful, but they do not indicative a Lyme infection by themselves.

Once again, even if your doctor tests you using the Western Blot, there is no guarantee that any of the bands will be positive, even if you do indeed have Lyme disease. The Lyme spirochete is smart, and it tends to hide from your immune system.

Making this a little more complicated, during the first six weeks after initial infection, the ELISA and Western blot tests are usually useless. If you know you were just bitten by a tick, it will take at least six weeks for a Bb infection, when present, to demonstrate a positive test result on either of the two standard tests. So, in this circumstance, it is important to ask your doctor to treat you immediately to help prevent a long running infection, as well as to test you after six weeks has passed. If an infection with Bb is present at that time, and you have symptoms of Lyme disease, find a doctor who has experience with treating people with this disease. 

What Can Be Done – Alternative Ways To Help Determine Whether You Have Lyme Disease & Co-Infections

If the ELISA and Western Blot tests tend to be inaccurate 50% or more of the time, then how do people who actually have Lyme disease and/or co-infections get an official diagnosis? Well, this is where having both personal and clinical experience with these diseases becomes so important. The following are some other ways to help determine a possible Lyme infection.

1. Lyme Questionnaire: This is a good place to start. The questionnaire is compiled of questions related to Lyme disease, and depending on your answers, will help determine the probability of an infection, including possible co-infections. Feel free to contact my office for this questionnaire.
2. Specialized tests: There are laboratories that use blood tests designed to be more sensitive to a Borrelia burgdorferi infection. as well as many co-infections. In addition, they often assess for the DNA of specific microbes using a blood test called a PCR as well. Together, they make the probability of finding a true infection much greater.

Most Lyme literate doctors offer these tests in their practice. They can be helpful in determining a Lyme infection, although I personally have found them more useful in determining specific co-infections. Unfortunately, all of the specialty tests tend to be quite pricey, and for this reason, aren’t always an option for some people. Examples of reputable laboratories that do these specialized tests are: Galaxy Diagnostics and iGeneX.

3. Listen to the Person! One of the greatest sources of diagnostic information comes from you. The signs and symptoms that you experience are very important when determining if you have Lyme disease. For this reason, I tend to spend approximately 2 hours, and sometimes more, on a first office visit with my patients, going over each person’s current set of symptoms, in addition to their past medical history, family history, social history, environmental conditions at home and in their working establishments (if applicable), past environmental exposure(s), specific dietary habits, and a thorough physical examination. Additional specialized testing is ordered when needed.

With regard to the physical examination, most people have heard that a tick infected with Borrelia burgdorferi causes a kind of “bullseye rash,” called erythema migrans, which is a rash on the skin where an infected tick bites and feeds. Unfortunately, it’s estimated that less than 50% of the people who are bitten by a tick infected with Lyme spirochetes develop this classic bullseye rash. So, just because you don’t see a bullseye rash doesn’t mean you weren’t infected with Lyme. Save the tick and send it out to a testing lab for additional evaluation. These labs are approximately 70% sensitive when testing for Bb and some of the co-infections.

4. Therapeutic Trial: Lastly, we conduct therapeutic trials in my office. I personally find this to be the most effective way to help identify a possible infection. Basically, the patient is given an antimicrobial that tends to cause a reaction when the bacterium Bb and/or coinfections are present. The reaction experienced is usually a temporary and slight worsening of their symptoms. They may also experience flu-like symptoms. It can be tricky in determining a true reaction because sometimes they are very subtle. This is one of the times where having experience with the disease is very important.

When used together, the four listed diagnostic methods above help provide much stronger evidence for a Lyme diagnosis. If you believe you have Lyme disease and/or any of the co-infections, feel free to set up a 15-minute complimentary consultation with me below (see button below). Or you can schedule an intial consultation if you prefer instead.

Additional Testing

• Testing for Lyme and co-infections aren’t the only assessments that should be performed. There are other assessments that are important in themselves, such as determining the following: food sensitivities, allergies, heavy metals toxicity, nutrient levels (vitamins, minerals, fatty acids, etc.), hormonal imbalances, and some others. An imbalance in any of these areas can be the difference between breaking free from chronic Lyme disease and being trapped in a chronic diseased state. Follow me by clicking on the social media links below for future articles explaining these additional tests in more detail, as well as many other tips.

I hope this article has given you insight in understanding some of the various ways to help determine if you or a loved one has Lyme disease and/or co-infections. And, I wish you all the best in your quest toward reclaiming your health. For more information, feel free to contact my office by clicking on the button below.

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