Lyme Disease - A Misdiagnosed Mystery

Lyme Disease Source: https://www.hopkinsmedicine.org/news/newsroom/news-releases/2020/12/research-story-tip

Intro

Lyme disease and other tick-borne illnesses are on the rise in America. Similarly, tick populations continue to rise. April through June is when deer ticks are most active (and sometimes in the fall), which means we must remain vigilant during these months and know what to look for. The purpose of this blog is to bring awareness to Lyme disease and other tick-borne illnesses as well as provide a deeper understanding about them.

Lyme Disease

Lyme disease was first identified in 1975. It presented in rural Lyme, Connecticut and caused rheumatoid arthritis-like symptoms (amongst others). These symptoms were unknown in origin at the time. Later in 1981, the spiral shaped bacteria, called Borrelia Burgdorferi, was discovered in deer ticks. It was observed that the bacteria could pass to humans via tick bites, and thus the mysterious Lyme disease was solved... or at least believed to be solved.

Today, the unfortunate reality is that the majority of Lyme Disease cases go undiagnosed. 84% of patients go without any diagnosis, 65% mistakenly receive other (incorrect) diagnoses and this leads to 59% of patients having a new diagnosed medical condition due to lack of proper testing, diagnosis and treatment. While factors such as outdated testing methods, inadequate clinical judgement and insufficient treatment options contribute to this misdiagnosis, the larger issue is that conventional medicine poorly understands the bacteria and the havoc it can create.

Testing and Diagnosis

The current diagnostic standard of Lyme disease is the ELISA test and Western Blot test. The ELISA test is estimated to be 80% accurate at best, however, by itself it cannot diagnose Lyme disease. If positive, then the Western Blot must be ordered to confirm the diagnosis. The limitation of the Western Blot is that its average sensitivity to diagnosing Lyme is 59.5%. Additionally, patient-driven data shows that 50% of missed/delayed diagnosis is due to false-negative results (37%) or patients being told that their test was "false-positive" (13%).

The diagnostic symptom of Lyme disease is the "bullseye" rash. If there was a recent tick bite, some doctors will use this rash to confirm Lyme disease and begin treatment without testing. However, not everyone with Lyme disease presents with the bullseye rash, or even recalls a tick bite. Only 1/3 of Lyme patients recall a tick bite which can be problematic with conventional medicine. Also, studies estimate that 27%-80% (big range) of Lyme patients develop the bullseye rash. Keep in mind, these numbers are also based on the skewed 16% of patients that get the proper diagnosis!

Symptoms - Acute vs Chronic

Lyme disease has been found to be either acute or chronic. In acute Lyme disease, since the bacteria is still circulating and hasn't settled into any tissues, antibiotics are the best course of action. The complexity in chronic Lyme is that the spiral-shaped bacteria can coil itself into tissues such as ligaments, tendons, organs and muscles. This can cause "migrating" muscle/joint pain that is common in chronic Lyme. Here are some common symptoms associated with both acute and chronic Lyme:

Acute Lyme

• Bullseye Rash

• Fever

• Chills

• Headache

• Fatigue

• Muscle/Joint Aches

• Swollen Lymph Nodes

• Muscle/Neck Stiffness

• Facial Palsy

• Arthritis

• Heart Palpitations

• Episodes of Dizziness and/or Shortness of Breath

• Inflammation of the Brain and Spinal Cord

• Nerve Pain

• Shooting Pains, Numbness, or Tingling in the Hands and Feet

Chronic Lyme Symptoms

• Migrating Joint Pain

• Exercise Intolerance - Physical activity leads to intense fatigue and/or depression

• Chronic Fatigue

• Depression

• Sharp Pains, Nerve Pains, and or Tingling/Numbness

• Facial Palsy

• Muscle Tremors

• Heart Problems

• Anything and everything that is unusual... I wish it wasn't so vague, but it's true. In functional and holistic medicine, Lyme is referred to as the "Great Mimicker." Since the list of symptoms is long, I linked an article from a doctor I respect, Dr. Zev Myerowitz, since he does a wonderful job at categorizing common symptoms:

  • Lyme Disease - Myerowitz Chiropractic - Bangor, Maine (myerowitzchiroacu.com)

Tick-Borne Illness and "Coinfections"

The dilemma with Lyme is often not even the Lyme disease itself. There are 18 known tick-borne illnesses (TBIs) in America, and 27 known TBIs worldwide. For example, Babesia Microti, a protozoan parasite TBI, is found in 52% of Lyme cases. With Conventional methods vaguely screening for antibodies specific to Borrelia (Lyme), this common TBI is often missed. Additionally, antibiotics won't successfully treat Babesia since it is a parasite, and not a bacterium. Other common TBI coinfections of Lyme are:

• Bartonella

• Anaplasma

• Ehrlichia

• Mycoplasma Pneumoniae

• Rickettsia

• Chlamydophila Pneumoniae

• Coxsackie Virus

• Powassan Virus

While conventional medicine recognizes each of these as pathogens, the treatment is only issued if: 1. found via testing and 2. pathogen levels are high enough to cause an acute response. Commonly, these organisms are low-grade burdens on the immune system and present as unrelated and otherwise "odd" symptoms. It is also possible to be bitten by a tick and become infected with a coinfection of Lyme rather than Lyme. This adds to the mystery and nuanced nature of TBIs and Lyme disease.

I often see Lyme patients in my practice, and my anecdotal experience is that other opportunistic infections often accompany Lyme and other TBIs. It seems to be a pattern and I've found that my Lyme patients are never only healing from Lyme, but are "bug collectors" that have multiple, and sometimes many, low-grade chronic infections that need to be addressed before fully healing. These common opportunistic "bugs" are:

• Epstein Barr Virus

• Cytomegalovirus

• Parvovirus

• HSV-1

• HSV-2

• HSV-6

• HSV-7

• Streptococcal A

• Candida

• Mold

• H. Pylori

Action

Often times, Lyme protocols lead to improvements followed by perceived regression. This is likely due to another pathogen "surfacing" as the body attempts to clear the Lyme. However, in my experience, this improvement followed by perceived regression indicates successful clearance of Lyme. The body now has increased capacity to address the next immune burden and it is usually ready to do so. It can be common to re-run labs and find "new" problems. Again, whatever was found was there prior, but is now surfaced. Healing this way in layers leads to long term health.

For acute Lyme (recent infection), conventional medicine and antibiotics are the best course of action. For chronic Lyme, functional and holistic medicine tend to have better outcomes. In acute cases, the problem is that the bacteria are present and need to be killed whereas in chronic cases, the problem is that the immune system has failed to kill the bacteria and they have made their way into tissues where antibiotics cannot reach. Having gone through conventional, functional and holistic methods myself, my personal and professional recommendations are.

1. Prepare to invest

   1. Due to the complexity of Lyme disease, the healing process requires investments in multiple areas - financial, lifestyle and time are the main areas of investment.

2. Test, test and test some more

   1. Understanding that Lyme is only part of the burden and investigating other areas (pathogens) will allow you to focus your efforts and expedite the healing process.

   2. Vibrant Wellness Tickborne panel is what I use in my practice to find Lyme and common coinfections. I have found it to be the most sensitive and accurate.

3. Keep an open perspective

   1. While Lyme disease can be incredibly debilitating, those willing to pursue healing will gain strength, awareness and spirituality during the process. Healing from Lyme is incredibly transformative as it pushes one to grow emotionally, physically and spiritually.

Conclusion

Unfortunately, due to inadequate conventional methods, Lyme disease is difficult to diagnose and treat. However, with thorough functional testing, healing from Lyme Disease (and other TBIs) can be quite direct. But remember, Lyme is usually not the only issue. Having all of the pieces and understanding how they fit together is where it becomes complex. A qualified practitioner can assist with bringing clarity to healing journey.

Assuming thorough testing has been performed, a Lyme client can expect to heal in as a little as 7 months! No matter where you are in your healing journey, there is always hope and there is always healing.

Sources:

1. Discovery of the disease agent causing Lyme disease | NIH Intramural Research Program

2. Mistaken Identity: Many Diagnoses are Frequently Misattributed to Lyme Disease - PubMed (nih.gov)

3. Lyme disease blood test (ucsfhealth.org)

4. LYME SCI: Analysis shows standard Lyme testing is highly inaccurate | LymeDisease.org

5. LYMEPOLICYWONK: How many of those with Lyme disease have the rash? Estimates range from 27-80%. - LymeDisease.org

6. Signs and Symptoms of Untreated Lyme Disease | Lyme Disease | CDC

7. Tickborne Diseases of the United States | Ticks | CDC

8. Babesia microti—Borrelia burgdorferi Coinfection - PMC (nih.gov)