01 Oct Chronic Lyme Disease; Part 1
In my last column, I mentioned a recent patient suffering from debilitating fatigue, joint and muscle pain, digestive complaints, and Mast Cell Activation Syndrome, among other concerns. She had perfect bloodwork and had seen multiple physicians and specialists for her individual complaints, suffering with chronic illness for nearly half her life and eventually written off as “all in her head” and was prescribed anti-depressants. A simple test I ran through a lab company called Igenex was the one test that finally came back with positive markers for Lyme disease and several co-infections. Sadly, this is only one of several patients I have seen with this debilitating disease in recent months, AND in a region of the U.S. where tick-borne illnesses were, not long ago, claimed to not exist.
As a very basic and brief refresher- Lyme disease was initially discovered in 1975 in Lyme Connecticut, however, evidence of its’ existence has been around for millennia and was found in Ötzi the Iceman, a 5,300 year old mummy discovered in the Eastern Alps. Today, we know that Lyme disease is caused by several species of bacteria (spirochetes). Borrelia burgdorferi and Borrelia mayonii are common causes in North America, while Borrelia afzelii and Borrelia garinii are the leading causes in Europe and Asia. The most common tick-borne illness in these regions, Lyme disease, is transmitted by the bite of an infected tick. Known for its’ telltale sign of a bullseye rash (after a tick bite), it’s said to be easily treated with early antibiotics.
My goal for this Part 1 of a two-part column is to improve awareness of the magnitude of Lyme disease and it’s often overlooked co-infections. Let’s start with some basic information about the fastest growing vector-borne disease in the U.S. and Europe (Lyme Disease) as stated by the Centers for Disease Control and Prevention (CDC):
- Each year, approximately 30,000 cases of Lyme disease are reported to the CDC.
- Recent estimates suggest the actual number of new Lyme cases in the U.S. alone to be over 300,000
- Lyme can be effectively cured if caught early and treated with 2-3 weeks of antibiotics.
- The number of confirmed Lyme cases has nearly tripled since the 1990s, and in the northeastern and upper midwestern U.S., Lyme disease has increased by more than 300%. (1)
- The CDC’s chief of epidemiology and surveillance states: “Lyme disease is a tremendous public health problem in the United States, and clearly highlights the urgent need for prevention.”
- There are now more new Lyme cases each year than breast cancer and HIV/AIDS cases combined!
- Lyme disease is EVERYWHERE and has been found on every continent except Antarctica.
Upon combing the CDC’s website, I found that most information covering tick-borne diseases is focused on the reported cases of acute infections with great detail given to prevention and treatment of Early signs of Lyme disease. In my own clinical practice, I’m finding a HUGE gap in awareness, recognition, and treatment of the suffering population who simply missed that early infection and have since spent years of their lives suffering.
Even though this disease was discovered over four decades ago, we still have no solid medical definition for an individual who presents with a more chronic or late presentation of this infection. I believe this to be partially due to the high percentage of false/negative results of conventional blood testing. Without a solid medical definition for this disease, there are also no effective treatment guidelines and no ICD-10 (diagnosis) codes and therefore diagnosis and treatment veers from the medical Standard of Care model. As a result, many (actually MOST) primary care doctors are failing or are unable to diagnose patients struggling with later stages of this disease. As the term “Chronic Lyme” is still under much scrutiny, there is a growing push in the Lyme community to refer to this condition as “persistent vector borne disease”.
Since the CDC, NIH, and other governmental organizations do not recognize “Chronic Lyme” as a true diagnosis, most insurance companies will not cover more than a few weeks of initial antibiotics. The term Post Treatment Lyme Disease Syndrome (PTLDS) was developed by the Infectious Diseases Society of America (IDSA) and is used for those who did not improve after the initial antibiotic treatment for the acute infection. These guidelines have not been changed since 2006, despite the growing numbers of individuals stricken with these tick-borne diseases.
The National Institute of Allergy and Infectious Diseases (NIAID) has funded three placebo-controlled clinical trials on the efficacy of prolonged antibiotic therapy for PTLDS which have all shown to be ineffective treatments. As, antibiotics (alone) aren’t effective and no other pharmaceutical treatment options available at this time, insurance companies have little incentive to cover ANY long-term treatment of those who suffer with an ongoing Lyme infection. With the rapid growth and global spread of these vector borne diseases and the crucial need for insurance coverage, there needs to be a big change in healthcare.
To make matters worse, Lyme infections are only the tip of the iceberg regarding tick-borne diseases. Over 50% of those with Lyme have at least one co-infection and 30% have two or more. These co-infections, such as Babesia, Bartonella, Mycoplasma, and Ehrlichia, add to the difficulty for successfully treating and also tend to worsen an individual’s symptoms. (2)
Common Symptoms of Lyme Disease and Co-Infections
The earliest and most well-known sign of a Lyme infection that every practitioner should recognize includes the notorious Bulls-eye rash. However, some studies have shown that as few as 27% of people with the disease actually remember having a rash. (3) Another complicating factor is the fact that the carrier tick may be as small as a poppy seed and its’ bite is painless. This means the majority of those acutely affected need to be aware of the unexplained onset of fatigue, headaches, fever, sweats, chills, and muscle and/or joint pain in order to treat promptly. Also reported after recent infections are cardiac symptoms which may include a reduced heart rate, lightheadedness, and myocarditis. Neurological symptoms caused by inflammation may lead to meningitis and create neck and/or jaw stiffness. Pain, numbness, and weakness can also occur (especially in the face). (4) Patients need to be aware of these early clues and seek immediate medical attention. Likewise, it is imperative practitioners take an adequate history which includes Lyme disease as part of their differential diagnosis even without a visible rash. This goes for all practitioners, AND not just in the Midwestern and Northeastern United States.
For those who may have missed the initial infection, the “hallmark” symptom of an ongoing Lyme infection is migrating pain: Pain that changes and moves around the body with good days and bad. This can present as muscle and joint pain as well as burning or tingling that tends to come and go. In women, symptoms often worsen right before, during, or after their menstrual cycle. The list goes on and differs from person to person but may also present with severe fatigue, digestive problems, cognitive dysfunction, difficulty breathing (air hunger), psychiatric symptoms (depression and anxiety), reproduction problems, POTS (Postural Orthostatic Tachycardia Syndrome), sensitivity to light or sound, difficulty finding words, insomnia, and thyroid dysfunction to name a few. (5) For a full list of potential symptoms, visit www.globallymealliance.org
Not surprisingly, this tick-borne epidemic has also been referred to as the “Great Imitator” and presents like many other health problems including Fibromyalgia, Arthritis, Chronic Fatigue Syndrome, Bells Palsy, ADD, MS, Parkinson’s, autoimmune and psychiatric disorders. Considering 3.5% of the US population has Chronic fatigue syndrome and 1.5% have fibromyalgia (both of which are clinical diagnoses because there are no diagnostic blood tests), isn’t it possible a persistent vector borne disease may have been missed is some of these cases?
Chronic Lyme, Persistent Vector Borne Disease, or Multiple Systemic Infectious Disease Syndrome (MSIDS)
While several passionate Medical Doctors have attempted to treat the more chronic forms of this growing epidemic, many have lost their licenses due to veering from the standard of care and treating a condition which has no effective treatment protocol. Dr. Richard Horowitz, a board-certified Internist and Medical Director of the Hudson Valley Healing Arts Center in New York has treated over 12,000 people with Lyme disease. He refers to those with chronic Lyme as having “Multiple Systemic Infectious Diseases Syndrome (MSIDS)” in which a vector-born infection(s) may only be part of the big picture with those suffering chronic illness. He has developed a 16-point model that encompasses multiple overlapping factors that keep individuals chronically ill. The key is to not just address the infection with antibiotics but to address the up to 16 other complicating factors such as the associated co-infection(s), sleep disorders, mitochondrial dysfunction, hormone dysregulation, food sensitivities, inflammation, nutritional deficiencies, toxins, mold, dysbiosis of the gut and several others. Hey, it’s Functional Medicine at its’ finest! THIS largely explains why the aforementioned studies focusing solely on antibiotic regimens have failed to show benefit for any long term treatments of Lyme (including PTLDS).
The Next Steps
Dr. Horowitz has developed a validated questionnaire which is presently more accurate than blood testing alone in those with significantly compromised health. If you suspect you may have Lyme or a “persistent vector borne disease”, I recommend you first take the Horowitz Lyme-MSIDS Questionnaire before pursuing further testing or a Lyme specialist: http://www.lymeactionnetwork.org/wp-content/uploads/2015/06/MSIDS.pdf
If after taking the survey, you still suspect Lyme, it is important to find a Lyme literate doctor who can do the appropriate work-up and lab testing. If you’re potentially dealing with an early infection, it is urgent you seek and receive treatment immediately for the best outcome. As lab testing is not the gold-standard means of nailing down a persistent infection, a clinical diagnosis with a Lyme literate doctor will be your best bet for finding and eradicating a persistent vector borne disease.
In my next column, I plan to go into more depth on other modes of transmission, forms and protective mechanisms, and how to properly diagnose and treat these chronic infections. As antibiotics alone have not shown to be an effective treatment for these chronic infections, a Lyme literate doctor will isolate the specific infection(s), address the whole individual and address the multiple complicating factors to further strengthen your body, mind, and immune system to find health once again.
- Girard YA, Fedorova N, Lane RS, Genetic diversity of Boriella burgdorferi and detection of B. bissettii-like DNA in serum of north-costal California residents. J Clin Microbiol, 2011; 49:945-54
- Bingham PM, Galetta SL, Athreya B, Sladyky J, Neurologic manifestations in children with Lyme disease, Pediatrics, 1995 Dec; 96(6): 1053-6