Co-Authored by Dr. Ellen and Dr. Scott Antoine. Comments and Edits by Dr. JP Saleeby
The co-authors of this article Dr. Ellen and Dr. Scott Antoine at the Center for Fully Functional Health grew up in New York and it wasn’t uncommon for a friend or family member to be diagnosed with Lyme disease. Their complaints typically consisted of rash with or without joint pain. They were typically given antibiotics for some period of time and told they were healed. For me (Dr. Saleeby writing) an ER doctor practicing in GA, SC and NC all through medical school, residency, and working as an Emergency Medicine attending, I can not remember ever being taught to consider Lyme disease, seeing a patient present with it, or personally diagnosing a case of Lyme. The Infectious Disease Society of America (IDSA) does not even recognize Lyme as a problem and chronic persistent Lyme disease (CLD) as a syndrome. The International Lyme & Associated Disease Society (ILADS) on the other hand does understand chronic Lyme and how to properly diagnose and treat. The organization even renamed the condition MSIDS. I did my training under the internationally known and respected Lyme doctor (LLMD) Dr. Richard Horowitz. I have been a member in good standing with ILADS since 2014. Lyme disease is now not only an endemic disease in high risk states in the USA (CT, NY, NJ, etc.) but is a worldwide epidemic seen in Europe, Asia, South America, etc.
If you were not living in New York or Connecticut, it was not even considered. When I started seeing patients with chronic health conditions presenting with chronic fatigue and pain that was not explained or improved with traditional and integrative therapies, I began to wonder what I was missing. It wasn’t long before it became clear that Lyme disease was certainly one of the conditions I should be considering in my differential diagnosis list in these ‘difficult to diagnose and treat’ cases. Many of these patients have seen numerous doctors (sometimes as many as 15-specialists and the last three doctors were psychiatrists because by that time ‘everyone’ was thinking they were crazy), and been told that ‘it was all in their head’ by not only the medical community but also often by their own family and friends.
The Cause
Lyme disease is caused by the spirochete (a ‘spiral’ bacterium) Borrelia burgdorferi and is transmitted to humans through the bite of an infected tick. * We now know the Borrelia sensu lato is the ‘’thing’’ as there are many species and strains of Borrelia in American and the world. This term encompasses all the Borrelia species that cause disease in humans. “Classic” symptoms of acute illness typically include fever, fatigue, and what is known as an Erythema Migrans (bulls-eye looking) rash. Long-term sequelae include neurologic, cardiovascular, and musculoskeletal complications.
*There are reported cases of sexual as well as in-utero transmission of Lyme disease. Ticks may not be the only vector for transmission.
The Centers for Disease Control (CDC) have stated on their website that the surveillance criteria were never intended to be used as diagnostic criteria, nor were they meant to encompass the entire scope of Lyme disease. The number of cases of Lyme disease is significantly underreported at approximately 30,000 new cases per year. The CDC states “studies suggest that the number of people diagnosed with Lyme disease each year in the United States is around 300,000.” After years of reporting averages of 30K, they in the past 5 years bumped up estimates to 10X that number. ILADS considers a more reasonable rate of 800,000 cases per year. Also noted is that Lyme disease is the fastest-growing vector-borne, infectious disease in the United States. It is now a world-wide epidemic, but recent COVID-19 pandemic has sidelined this and only after the pandemic is over will we be able to re-focus our attention on this disorder.
Contrary to popular belief, Lyme disease is not just a medical condition found in those living on the East Coast, as cases have been reported in every state in the USA and numerous other countries in the world. I have been surprised when I have had patients with a clear case of Lyme disease (CDC positive blood testing, history, rash, symptoms, etc.) who have been told by another practitioner (likely a non-LLMD) that ‘it can’t be Lyme. We don’t have Lyme here.’ That’s just not an accurate statement! [LLMD= Lyme Literate Medical Doctor]
What You Need To Know About Lyme Disease
- Lyme disease is a complex disease and can be difficult to diagnose.
- Only 50%-60% recall a tick bite.
- At most, 60% of infected people develop the typical ‘bulls-eye’ rash. More likely it is about 33% that report a ‘’bulls-eye’’ lesion(s).
- Joint pain is present 20-30% of the time
- Fifty percent will suffer Psychiatric or Neurologic features such as Anxiety and Depression and involuntary movements, “Bell’s Palsy” and other.
- Lyme disease is often referred to as the ‘Great Imitator’ because symptoms mimic other health conditions.
- Fibromyalgia, Multiple Sclerosis, Anxiety, and Chronic Fatigue are among the most frequent diagnoses patients are given.
- Rheumatologic and neurologic diseases are other commonly diagnosed conditions in Lyme infected individuals.
- There are cardiac manifestations mostly rhythm problems and palpitations but also functional such as CHF and myocarditis.
- There is Lyme conjunctivitis and iritis too.
- Lyme disease can present with a myriad of symptoms as many react differently to the infection. Here are some of the more common presentations we see:
- Fatigue
- Headaches
- Irritability
- Joint pain
- Pain (Radiculopathy)
- Anxiety/Depression/Mood Changes
- Numbness/Tingling
- Chest pain
- Palpitations
- Poor memory/Focus/Concentration (Cognitive issues)
- Sleep disturbances
- Facial paralysis (known as a Bell’s Palsy)
- Hormone abnormalities
** This list is not comprehensive of all possible presentations, just the more common ones LLMS see in the office.
- Testing for Lyme disease is unreliable.
- ELISA testing is the first step in a two-step screening process recommended by the CDC and is only 35% accurate in culture positive Lyme disease.
- Standard Western Blot, the second step in the screening process, can miss 20-30% of culture positive Lyme disease.
- Culturing Borrelia is very difficult and is only performed in specialty labs and some university settings.
- IgeneX and Vibrant Wellness (and Red Labs in Belgium) are at the top of the list for best labs for serology testing.
- Lyme disease is a clinical diagnosis.
- The CDC notes that the diagnosis of Lyme disease is based on physical signs and symptoms as well as a history of possible exposure to affected ticks.
- Lab testing alone cannot make the diagnosis.
- The Horowitz MSIDS 38-point Questionnaire is a good screening and prognosticative tool.
- Chronic health concerns are common in Lyme disease patients.
- 40% of patients diagnosed with Lyme disease report chronic health issues.
- Ticks can harbor many infectious agents that can be transmitted through the tick bite.
- Co-infections are increasingly being reported:
- Babesia
- Ehrlichia
- Bartonella
- Anaplasma
- Rocky Mountain Spotted Fever
- STARI (southern-tick-associated rash illness)
- TBRF (tick borne relapsing fever)
- Colorado Tick Fever
- Powassan Fever
- Q Fever
- Others
- Lack of adequate treatment can result in persistent Lyme disease (also known as Chronic Lyme disease).
- Short courses of antibiotics have resulted in upwards of 40% of recurrent/persistent disease.
- Persister cells are seen with Borrelia (Bb)
- Contributing to poor outcomes are things like multi-drug/herb resistance and persister cells, biofilm and the fact that Bb has several forms like cell-wall-less s-form and l-form and cystic forms that hide and lay dormant for months.
- Treating Acute Lyme infections are quite different that Chronic Persistent Lyme infections.
- Treating CLD has a high failure rate especially if not monitored by well-trained LLMDs.
If You Find a Tick on Your Body
- Stay calm. Don’t panic.
- Remove the tick. Proper tick removal technique is necessary to prevent transmission of disease. *
- Do not crush, burn or throw away the tick, it can be sent off for analysis using PCR and other technology to determine if it is a carrier.
*Watch this video to learn proper tick-removal technique https://youtu.be/0wotB38WrRY
Resources: www.ILADS.org; www.CarolinaHolisticMedicine.com https://www.lymedisease.org; https://lymediseaseassociation.org;
We recommend being very careful with social media forums as much of the information can be misleading or incorrect. Consulting Dr. Google is never a good idea when dealing with Bb.