What is Lyme disease? During my research for this post I noticed that any information opposing the CDC’s findings has become increasingly difficult to find when searching. There are different scientific theories and studies about Lyme disease. Doctors disagree how it’s transmitted, how to diagnose it, and how to treat it. This makes researching Lyme rather challenging. One thing doctors do seem to agree on is that Lyme disease is a bacterial infection caused by strains of Borrelia burgdorferi. It is also agreed that Lyme is transmitted from infected ticks after being bit. However, that’s about where the agreements end. Thus finding common information becomes more difficult.
Lyme disease is a multi-stage, multi-systemic inflammatory disease. It affects the skin, joints, nervous system and organs. According to Lyme Action Network, “Lyme is the #1 insect (vector) borne disease and #2 infectious disease (behind Chlamydia) in the U.S. and is a problem world wide” (http://lymeactionnetwork.org). Is has been reported in all 50 states and over 80 countries.
How is Lyme transmitted?
Some doctors argue Lyme disease can only be transmitted through infected ticks. Diversely, other doctors and scientists believe Lyme can be transmitted from other insects and arachnids. Some also think it’s possible to contract the bacteria in utero, as well as through sexual intercourse. According to the Lyme disease Association (LDA), it is believed that Lyme disease can be passed through the placenta to the fetus. DNA has been found in mothers’ breast milk, however, transmission has not yet been proven. There is also no proof it can be sexually transmitted. Though, preliminary studies have found positive testing for Lyme DNA in semen as well as cervical tissue. (https://lymediseaseassociation.org/about-lyme/medical/about-lyme/)
Symptoms of Lyme;
Common early signs of infection may include a bulls-eye rash, known as erythema migrans. Rashes without a bulls-eye appearance may be present, or in some cases a rash does not appear at all. According to LivLyme Foundation, less that 50% of infected people get a rash. Furthermore, less than 50% of Lyme patients don’t remember ever being bit by a tick. Lyme disease can affect any organ of the body. This includes the brain, nervous system, muscles, joints, and the heart. Symptoms vary from person to person and can differ from day to day. Symptoms may be very persistent, while others may come and go unexpectedly.
Below is a list of symptoms Lyme patients often struggle with:
- Additional/new rashes
- Difficulty thinking, loss of cognitive functioning
- Problems with speech and or writing
- Difficulty finding words and remembering names
- Disorientation, getting lost, forgetting where you are going
- Lightheadedness, instability, vertigo
- Forgetfulness, poor short term memory
- Mood swings, irritability, depression
- Chronic flu-like symptoms
- Unexplained fever, chills, sweats, or flushing
- Chronic extreme fatigue
- Unavoidable need to sit or lie down
- Chronic infections
- Stiff neck
- Chest pain
- Swollen glands
- Shortness of breath
- Visual changes or blurry vision
- Floaters, eye discomfort
- Hearing loss, buzzing, ringing, ear pain in ears
- Heightened sensitivity, and agitation to sound or noise
- Bell’s palsy/ facial paralysis
- Heart palpitations, irregular heart beat, heart murmur
- Oral issues, tooth or jaw pain
- Chronic often debilitating pain
- Shooting pain
- Arthritis with severe joint pain
- Nerve pain
- Intermittent pain in tendons, muscles, joints and back- often migrating
- Burning or stabbing sensations
- Severe muscle pain/cramping
- Muscle twitches, spasms, or tremors
- Numbness or tingling in appendages
- Upset stomach or abdominal pain
- Gastrointestinal or digestive dysfunction
- Bladder dysfunction
- Unexplained menstrual irregularity
- Skin hypersensitivity
- Unexplained weight gain or loss
- Hair loss
- Sleep disorders. Trouble sleeping
- Loss of libido
According to the LDA, “The screening tests for Lyme disease is at best 50% sensitive.” This means a person can test negative and still have the disease. Often times patients have to wait months, years or even decades before this happens. The Centers for Disease Control (CDC) recommends the ELISA and Western blot lab tests. Both of these often return a “negative” result. This is due to the fact that they test for antibodies to the Lyme bacteria instead of the bacteria itself. Many times the antibodies have not produced high enough quantities to be detected at the time the labs were taken.
Getting the right doc!
Unfortunately, many physicians wrongly think that a negative screening “rules out” Lyme disease. This was the case for my daughter and me. We were not diagnosed with Lyme until we had more extensive (and expensive) labs done. Many doctors and scientists strongly believe that a clinical diagnosis is vital. Meaning, the physician looks at the signs, symptoms, and laboratory results of each patient in order to make a diagnosis.
According to Dr. William Rawls, “more than half of people with all the symptoms of Lyme disease will not meet the CDC qualifications for a positive test,” https://rawlsmd.com/health-conditions/lyme-disease. Lyme, and other tick borne illnesses can be very difficult to diagnose. As mentioned earlier, tests are inaccurate about half of the time. Furthermore, Lyme disease is often misdiagnosed as Chronic Fatigue, Fibromyalgia, MS, Autism, Alzheimer’s, Parkinson’s, Lupus, autoimmune disorders and more.
Sadly, I was first diagnosed with depression, Parvo (not the puppy kind), Irritable Bowel Syndrome, Hashimotos, and then Fibromyalgia. It was almost a decade of declining health before I was finally diagnosed with Lyme disease.
Diagnosing and treating Lyme Disease is often more difficult when the patient also has co-infections. A co-infection is and infection of a host by multiple pathogens at the same time. Lyme Action Network states that “Lyme and associated tick-borne diseases can lead to neurological, cardiac, psychiatric, and/or arthritic symptoms in humans; can affect any organ in the body’s systems and /or organs, and can lead to death”. If not treated early, the immune system can breakdown, causing patients to become seriously ill. Hence, making it even more difficult to restore optimal health and put Lyme into remission.
Advice on treatment is also very inconsistent. Whereas some doctors solely rely on antibiotic treatment, others encourage alternative methods. Even more so, other physicians believe using both approaches is appropriate.
The CDC recommends 10-21 days of antibiotics for treating Lyme. They claim, “those treated appropriately with antibiotics early” typically recover quickly and fully. In addition, they also suggest that IV treatment may be required if certain neurological or cardiac symptoms occur. In contrast, the International Lyme and Associated Diseases (ILADS) recommends a minimum of 21-28, and advises longer treatments may be needed. According to ILADS, “there has never been a definitive study proving the theory that a 28 day treatment cures Lyme disease”. Likewise, there is a difference in medical opinions about short term vs. long term use of antibiotics. Several scientific, peer reviewed, studies show that the Borrelia bacteria can survive several weeks of oral antibiotics.
Unfortunately, there is a Lyme disease “war” between the two major doctors’ associations. The war is in regards to proper diagnosis and treatment of Lyme disease. The two associations in disagreement are; the Infectious Disease Society of America (IDSA), and the International Lyme and Associated Diseases Society (ILADS). The ISDA represents infectious disease doctors who rigidly believe that all Lyme is successfully treatable with a few weeks of antibiotics. Further, the ISDA does not recognize Chronic Lyme disease as a real diagnosis. Instead, they refer to it as “Post Treatment Lyme disease Syndrome” (https://www.idsociety.org/practice-guideline/practice-guidelines/#/date_na_dt/DESC/0/+/).
ILADS, on the other hand, is a medical society dedicated to the appropriate diagnosis and treatment of Lyme and co-infections. They also credit Lyme as a complicated disease. ILADS goals are to provide support for healthcare providers and researchers in their quest for more effective treatments for tick borne diseases.
Antibiotics may not be the answer.
There is a large group of physicians who strongly believe that antibiotics are not always the answer. Dr Rawls states;
“Aside from antibiotics, a healthy immune system is essential for preventing chronic disease. At least half of people with an infected tick bite will develop fatigue and migrating arthritis within weeks to months after completing antibiotic therapy. Repeat antibiotics generally provide transient benefit or no benefit at all. Chronic Lyme disease is rarely fatal, but it can make you miserable for a lifetime. Typically, people with chronic Lyme disease look normal on the outside. Routine screening labs at the doctor’s office often come back as normal, which can be extremely frustrating for patients because they are often discounted as not being ill. Inside, however, deep in tissues, a chronic war is going on between a hidden microbe (or microbes) and the person’s immune system. This results in a wide spectrum of seemingly unrelated symptoms“. https://rawlsmd.com/health-conditions/lyme-disease
In result, this is often when patients become desperate for help. Traditional doctors dismiss symptoms and patients are left feeling helpless. Then they begin to look for alternative treatments and therapies, which are commonly viewed as unorthodox.
Lyme disease is a controversial disease with very inconsistent information and advise. I never knew how much personal research would be needed in order to understand what my own body was up against. This disease is too commonly understated, overlooked, ignored, or altogether dismissed.
I have come to the conclusion that each patient must be their own advocate. My advice to all those who are afflicted, is to trust your body and your instincts. Do not let doctors tell you it’s “in your head”, or that you “look fine”. You know your body better than anyone else. Keep searching until you find a doctor who will listen to you and your symptoms. Most importantly, do not give up. Read and learn as much as you can. Equip yourself with knowledge, so you can talk with your doctor. There is hope and there is light in the darkness.
Sources: Buhner, S.H. (2015) Healing Lyme. Boulder, CO. Raven Press. Rawls, W. (2017) Unlocking Lyme: Myths, Truths, and Practical Solutions for Chronic Lyme Disease. Cary, NC. FirstDoNoHarm Publishing. Lymedisease.org- https://www.lymedisease.org/ ; The Free Dictionary- https://medical-dictionary.thefreedictionary.com/clinical+diagnosis; IDSA-https://www.idsociety.org/public-health/lyme-disease/lyme-disease/10-facts-about-lyme/; https://www.cdc.gov/lyme/index.html; Liv Lyme Foundation-https://livlymefoundation.org/resources/what-is-lyme-disease/; https://www.ccohs.ca/oshanswers/diseases/lyme.html; https://www.aappublications.org/news/2017/11/13/PPLyme111417; Lyme Action Network- www.lymeactionnetwork.org/about-lyme-disease/; LDA- https://lymediseaseassociation.org/about-lyme/medical/about-lyme; LDA-https://lymediseaseassociation.org/about-lyme/medical/about-lyme/; https://www.lymedisease.org/lyme-basics/lyme-disease/symptoms/ Shea Medical http://www.sheamedical.com/the-battle-for-the-truth-about-lyme-disease Global Lyme Alliance– https://globallymealliance.org/about-lyme/ PMC US National library of Medicine National Institutes of Health; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5872223/