According to the Center for Disease Control (CDC), Lyme disease is the fastest growing vector-borne (infections transmitted by the bite of an infected arthropod species such as mosquitoes, ticks, triatomine bugs, sand flies, and black flies) infectious disease in the United States.  In fact, Lyme disease is becoming such an epidemic, the CDC is estimating almost 300,000 people are infected annually and 40% of Lyme patients will end up with long term health problems.  

I never got a rash, so no problem right?

WRONG!  According to the CDC, fewer than 40% of patients with Lyme disease recall any rash.  And unfortunately, the onset of symptoms of Lyme can be easily misconstrued and mistreated as something else entirely.  Some of these symptoms include headaches, fever, fatigue, muscle pain and aches, nausea, numbness and tingling, neck stiffness.  Without the tell-tale marker of the rash around the tick bite, many patients could mistake this life altering disease for the common cold or flu like illness and never seek treatment.  And unless Lyme is diagnosed and eradicated properly, this sneaky infection can literally destroy your health and your life.           

Tested negative for Lyme

If you were bit by a tick and went to your primary care physician, he/she might have performed the Elisa Screening Test.  Much to the dismay of the medical community, this routine test misses 35% of culture proven Lyme cases.  The type of testing frequently used on suspected Lyme patients is relatively specific, but not very sensitive.  This means that if you test positive, you most likely do have Lyme, but a negative reading doesn’t mean you aren’t infected.    

The diagnostic methods used for Lyme disease are controversial

There are two main organizations that help shape the diagnostic methods for Lyme disease. The CDC and the Infectious Disease Society of America (ISDA) recommend a “two tiered” method that is fairly specific, but unfortunately insensitive. Consequently, the ISDA recommendations will miss many cases of Lyme disease that should be treated with antibiotics. On the other end of the spectrum are the International Lyme and Associated Disease Society (ILADS).  ILADS considers Lyme disease a “clinical diagnosis” and uses highly sensitive, but nonspecific testing methods to confirm the diagnosis. Consequently, the ILADS recommendations will unlikely miss cases of Lyme disease, but may be treating patients with antibiotics for long periods of time (months to years) that may not even have Lyme disease. 

The treatments recommended for Lyme disease are controversial 

The CDC/ISDA guided doctors recommend that three weeks of oral antibiotics is sufficient to treat most cases of Lyme disease. If you have symptoms that persist after treatment, these well intentioned but misinformed doctors will insist that you should look for another diagnosis. They may suggest anti-depressants for your mood problems, pain medications for your aches and pains, sleeping pills for your insomnia and the list goes on and on. 

Conversely, many ILADS doctors are treating patients for Lyme disease based on a “clinical diagnosis” and low specificity confirmatory laboratory tests. These well intentioned doctors may continue to give you various antibiotics, both orally and intravenously for months or years as long as you have symptoms of Lyme disease. Should you not respond to the antibiotics, these ILADS doctors may assume that you have a co-infection such as Bartonella, Babesiosis, Anaplasmosis, Ehrlichiosis and other strains of Borrelia (Lyme).

Why can’t I be cured?

Lyme is an extremely complex disease involving your immune system initially, but as it progresses, Lyme can affect every system in your body.  Borrelia (the causative agent in acute Lyme disease) is a nasty little critter that can literally “hide” from antibiotic treatment. Borrelia can change shape from a spirochete to a spherical form, it can create a “biofilm” which is a protective envelope keeping the antibiotics from working. Borrelia can also burrow into the tissues of your body hiding from the antibiotics as it goes deeper into your organs and tissues. There is also evidence that Borrelia can activate your innate immune system, setting off an inflammatory response and no amount of antibiotics will help this inflammatory process.  There are many, many other mechanisms which can explain the difficulty in treating you for Lyme disease including abnormal responses in your neurologic, hormonal and immune systems.  

What causes Lyme Disease to flare up?

Believe it or not, you may have a genetic predisposition to suffering from chronic Lyme disease.  Even if you diagnose and get treated early in the course of your Lyme disease, you may have fragments of the Borrelia organism that remain in your system. Then when you incur some form of additional stress, this stress impairs your immune, nervous and endocrine system and reactivates your Lyme disease causing a flare up.  One of the most common causes of a flair up of Lyme disease is exposure to unhealthy molds and other noxious products found in the interior of a water-damaged building (WDB).  Both Lyme disease and mold exposure can cause a Chronic Inflammatory Response Syndrome (CIRS) and follow the same immune, neurological and endocrine (INE) pathways of response.  Therefore if you have chronic Lyme and are exposed to the interior of a WDB, your body follows the same response processes, thus exacerbating your previously dormant Lyme disease.   

What is the best approach to treating a patient with chronic Lyme disease?

Chronic Lyme disease is a complex syndrome, initially caused by an infection from a pernicious organism. However, as the syndrome progresses, your immune system, your nervous system and your endocrine system becomes compromised, potentially leading to co-infections, enhanced susceptibility to environmental toxins (like mold and volatile organic compounds) and a myriad of other problems. 

If you have chronic Lyme disease, your doctor must look at “the big picture” (holistic approach) to determine what level of your physiology is malfunctioning, then use objective measures to guide therapy. Making haphazard guesses based merely on symptoms is fraught with problems because many symptoms have common underlying pathologies (like an inflammation).   

More specifically if you came to my office with a diagnosis of chronic Lyme disease, I would do tests that are highly sensitive initially and if these tests are positive, do tests that are more specific. There are a variety of “cutting edge” tests that can measure your body’s immune response to various components of the Borrelia organism which can increase specificity. I would also entertain the possibility of tick-related co-infections. Mold related inflammatory syndromes must also be considered and measured (through genetic testing, markers of inflammation, and environmental testing) 

Lyme disease continues to be a challenging diagnosis for both patients and doctors. Any doctor (or other health professional) that tells you Lyme Disease is easy to treat and requires a simple regimen of antibiotics is highly misinformed. Lyme disease treatment requires a comprehensive, systematic, objectively guided approach from a health care provider with knowledge and experience. 

If you have been diagnosed with Lyme disease or have been bit by a tick and since have experience deteriorating health, you may have chronic Lyme disease.  Contact Dr. Rothman by calling 732-268-7663 and establish a better plan to help you get to the root cause of your symptoms.