Chronic Lyme Disease: Part Two
Updated: May 20
I was recently interviewed about chronic lyme disease. As a follow up to my first blog post “Chronic Lyme Disease FAQ’s,” I have written this post titled “Chronic Lyme Disease Part Two” to answer more questions for those struggling with chronic lyme disease.
1. Why do so many doctors seem to disbelieve that people have symptoms of Lyme disease long after they've been treated?
There is a common misconception that Lyme disease is easily treated with a few weeks of antibiotics. There were some early studies that suggested that was the case. Unfortunately, many doctors do not have the time to scour the literature looking at the most recent findings, but if they did they would see that our understanding of Lyme disease has changed. There have been multiple studies in the last few years that support the fact that the bacteria that causes Lyme, Borrelia Burgdorferi, can persist in the human body even after antibiotic treatment. This is not surprising given how many patients either suffer relapses of their Lyme disease or never feel like they get better.
2. Is chronic Lyme disease a real thing, and what, exactly is going on? How can people have lingering symptoms after the bacteria is cleared out of their bodies?
Chronic Lyme Disease is a real entity. Many patients who have been treated for Lyme have lingering symptoms for weeks, months and even years. To explain this, the diagnosis Post-Treatment Lyme Disease Syndrome was created to better describe patients who did not get better after a course of antibiotics. Patients with this syndrome were believed to have no evidence of current infection so their persistent symptoms were due to something else. What that something else was, no one could explain. The problem with this term is that it implies that patients should live with the diagnosis since there is nothing to be done about it since retreating symptomatic patients who were already treated for Lyme disease in the past was a waste of time. Continued research in this area disputes this belief. A recent re-appraisal of trials done on Post-Treatment Lyme Disease Syndrome, written by Dr. Brian Fallon from the Lyme and Tick-borne Diseases Research Center at Columbia University, came to the conclusion that there were "benefits of repeated antibiotic therapy for patients with specific chronic symptoms." This points to the fact that Post-Treatment Lyme Disease Syndrome is a misnomer. This is not Post-Treatment Lyme Disease Syndrome but rather Chronic Lyme Disease that has not been completely treated. Research in mice and primates has repeatedly shown that the spirochete bacteria that causes Lyme, Borrelia burgdorferi, can continue living in animals despite antibiotic. A small study was published in April 2018, showing that the same phenomena occurs in humans.
Some chronic lyme disease patients will have additional infections, also known as co-infections, in addition to the Lyme, and many of these patients suffer from chronic symptoms and do not get better because they haven't been treated appropriately for these other infections. One such co-infection, Bartonella, has been shown to resist many of the traditional antibiotics used for Lyme disease. If this infection lingers, it can cause many of the chronic symptoms associated with chronic lyme. That is why it is of utmost importance for patients to be screened for all possible tick-borne infections, especially if they are not getting better.
Lastly, many patients suffering from Chronic Lyme have confounding factors that affect their ability to heal. Trauma and stress, toxin exposure, mold exposure, heavy metals, and other insults to the body can affect the patient's immune system preventing them from fighting off the infection. All of these issues need to be addressed systematically on the patient's road to recovery.
3. What are some of the more common symptoms of long-term/chronic Lyme disease after treatment?
• Insomnia or sleep disturbances
• Diffuse pain
• Joint pain with or without joint swelling
• Muscle pain
• Decreased short-term memory
• Difficulty with concentration
• Numbness and tingling
• Dizziness or vertigo
• Chronic abdominal pain
4. What are the best treatments for the symptoms of chronic lyme disease?
Before attempting treatment, it is critical to get to the root cause first. If all these symptoms are related, we need to determine how. If tick-borne infections are at the root, then doing the appropriate testing to determine whether the infections are still active is critical. However, lab testing is currently inadequate and might not give definitive diagnostic information, so we must use clinical data as well. If it is determined that Lyme and possibly other tick-borne diseases are responsible for persistent symptoms, then treatment should be initiated. There are many treatment options that have been explored, so this should be personalized for each patient. Herbal protocols, homeopathy, and many other holistic approaches have been used for some patients with relative success. Sometimes antibiotics, often multiple combinations of them, are necessary. In addition to treating the root cause, the individual symptoms need to be addressed as well. Taking an integrative view of these symptoms can be helpful. For instance, if there is abdominal pain, then a change in diet, such as gluten and dairy free, working on the good bacteria of the gut and helping the digestive process sometimes with supplements or medications can be helpful.
Addressing other underlying issues that are affecting the immune system and preventing the treatment from working is critical.
5. Is there any compelling new research that promises better treatments early on to intervene upon these chronic symptoms?
There is compelling new research that suggests that old antimicrobial treatment used in the past for diseases like Tuberculosis and Leprosy might be helpful for Persistent Lyme Disease. These old drugs are finding a new purpose when combined with traditional lyme antibiotics to increase the effectiveness of the treatment.
6. Is there a relationship between lyme disease and MCAS?
There is a significant subset of patients with Chronic Lyme symptoms who develop a condition known as Mast Cell Activation Syndrome (MCAS). The symptoms of MCAS overlap the symptoms of chronic lyme disease. There are patients who will just have MCAS alone without any obvious sign of lyme or other infection, but there will be others who will have had Lyme as a trigger for the MCAS and these patients need to be treated for both. Since the treatment for this syndrome is different than the treatment for Lyme disease, it is important for Lyme patients to be screened for this.
Mast cells are white blood cells found in all our organs and they are one of our first lines of defense against the environment. Mast cells contain over 200 different chemicals inside them, including histamine, and when they are attempting to fight off something foreign, in this case, lyme disease, they explode or degranulate, releasing the chemicals causing inflammation. There are many triggers for mast cells and they are different in each patient. Examples of triggers include certain foods, mold, pollution in the air, viruses, bacteria, and so on. Initially, it starts as a normal immune response, but in this syndrome of mast cell activation, the reactions become dysregulated and inappropriate and the mast cells can continue degranulating with no end in sight. Since mast cells are found throughout the body, when they react, they cause inflammation wherever that happens. If mast cells react in the GI tract, then abdominal pain, diarrhea, vomiting, nausea, bloating and many other symptoms can occur. If mast cells react in the nervous system, they can cause headaches, numbness and tingling, and mood changes. Diagnosing and subsequently treating this condition can greatly improve a patient's quality of life. Of course, if the root cause of what is potentially triggering the mast cells is Lyme disease, then that needs to be targeted as well.
MCAS AND TICK BORNE ILLNESS