Lyme Disease and Postural Orthostatic Tachycardia Syndrome
POTS Syndrome: A comprehensive Patient Guide
The connection between POTS and Lyme Disease
I was recently featured on RawlsMD.com in a comprehensive article about The Lyme Disease & Postural Orthostatic Tachycardia Syndrome (POTS) Connection. If you haven’t yet had a chance to check it out, I highly recommend reading it here. Thank you again for including me in the article.
LYME DISEASE TREATMENT
How long have you been treating Lyme disease patients?
September 2019 will be exactly 20 years since I started practicing medicine in a private practice setting. Due to the endemic area of the country that I practice in, I’ve been treating patients with Lyme disease since that time. However, after 2011, when I founded Armonk Integrative Medicine, the number of patients with Lyme disease and co-infections in my practice has increased exponentially.
That was mainly due to two factors:
1) The tick population grew and the percentage of ticks with Lyme and co-infections grew as well making it easier, in a sense, for patients to get infected.
2) Patients with complex, multisystem disorders started seeking me out based on my experience with other similar cases and many of these patients turned out to have chronic, persistent tick-borne infections that went undiagnosed.
What is the age range of the patients you treat?
Adults and Children 10 years of age or older.
How many Lyme patients have you treated to date?
Probably over 1,000.
LYME DISEASE AND POTS
Approximately what percentage of the Lyme Disease patients you see exhibit POTS symptoms?
At least 50%.
Postural Orthostatic Tachycardia Syndrome Symptoms
What is postural orthostatic tachycardia syndrome?
Postural orthostatic tachycardia syndrome or POTS is a condition in which the autonomic (involuntary) nervous system malfunctions, also known as dysautonomia. The autonomic nervous system is responsible for controlling bodily functions such as digestion, heart rate, blood pressure, and sweating. In POTS, patients have an excessively high heart rate when they go from lying down to standing, which leads to disability symptoms in many patients.
What are the common symptoms of postural orthostatic tachycardia syndrome (POTS) you see in patients?
The most common symptoms associated with POTS are heart palpitations, dizziness particularly with positional changes, fatigue, difficulty concentrating and brain fog, headaches, abdominal pain, nausea, decreased exercise tolerance, intolerance to hot and/or cold temperature and sleep disturbances.
Diagnosing Postural Tachycardia Syndrome
How is postural orthostatic tachycardia syndrome (POTS) diagnosed?
Postural orthostatic tachycardia syndrome testing
There are several tests that I can do in my office to help make a diagnosis of POTS and dysautonomia. The tests that I perform include the standing test, small fiber biopsy and blood work. The standing tests measures the resting blood pressure and heart rate first with the patient lying flat on the exam table, then with the patient sitting for up to 10 minutes and finally with the patient standing up for 10 minutes.
POTS patients have orthostatic tachycardia, which is an increase in heart rate of 30 beats per minute while standing compared to lying down. A small fiber biopsy can be performed in patients to determine if the POTS is neurogenic or caused by a neurologic problem. It has been reported by the Mayo clinic that more than 50% of POTS is caused by small fiber polyneuropathy. Small fibers are involved in autonomic function and if they are damaged, dysregulation of the autonomic nervous system ensues and one manifestation of this is POTS. Bloodwork is used to rule out other conditions that can mimic POTS to identify possible root causes of POTS and to understand if there is an autoimmune component to this condition in specific patients.
What type of doctor can diagnose POTS?
Formal testing by a specialist is usually recommended for patients who have a normal standing test with symptoms suspicious for POTS and for those who have frequent syncopal (fainting) episodes. These tests can include a Tilt Table test, Echocardiogram, and Holter Monitor, but there can be other tests that are necessary depending on the patient’s symptoms.
Do you ever refer patients to a specialist for POTS?
Yes, there are some patients who will need more extensive testing, such as a tilt table test, which is usually performed by a cardiologist or pediatric cardiologist if it is a child. There are some neurologists who have an interest in POTS, and they can do some of the appropriate testing as well.
As I have an interest in POTS and Dysautonomia, many patients that I see are actually being referred to me for this condition. I can treat the majority of them alone, but sometimes it is necessary for me to refer patients to either a cardiologist or neurologist for a variety of reasons. From the patient’s standpoint, having a team of physicians who are collaborating on their case can be helpful.
Is there a specific combination of microbes (such as Borrelia and Bartonella) where you tend to see POTS more often?
POTS can be triggered by many different things, including infections. Within the category of infections, I have seen POTS triggered by viruses such as Epstein-Barr, bacteria such as Bartonella, Borrelia and Strep, and parasites, such as Babesia. Other things that can trigger POTS include hormonal fluctuations, mast cell activation syndrome, stress, trauma, head injury, mold exposure, chemical exposure and underlying autoimmunity such as Celiac disease or Sjogren’s Syndrome. Every patient is different, so it is important to identify the root cause as this could potentially change the treatment.
Postural Orthostatic Tachycardia Syndrome (POTS): Treatment
How is postural orthostatic tachycardia syndrome (POTS) treated? What treatments are you most likely to recommend for patients who have POTS? Are there specific medications, lifestyle modifications, or supplements that you use?
I use an integrative approach in the treatment of POTS. Some patients will require medication, some will respond to supplements, but all will need to make lifestyle modifications. Of course, identifying the root cause and eliminating possible triggers is crucial.
From a medication perspective, some commonly used pharmaceutical agents are fludrocortisone, midodrine, beta-blockers, pyridostigmine, clonidine, and ivabradine.
From a lifestyle modification perspective, it is important for these patients to avoid dehydration, drink at least 8-10 glasses of water a day and keep salt intake up to 8-10 grams a day.
Compression stockings that go up to the waist can be helpful in preventing blood from pooling down into the legs, which will aggravate POTS. Exercise is important long-term for strengthening the heart, circulation and decreasing the symptoms of POTS, but is often difficult for these patients, especially when the exercise is done in a standing position. Their tachycardia, or rapid heart rate, is worse in this position, which will make it intolerable for some patients to exercise. Exercising in a recumbent position is better tolerated and allows the patient to build up stamina. For instance, there are indoor bicycles and rowing machines that allow the person to lay back at least partially, which minimizes the risk of getting orthostatic.
In addition to the above lifestyle modifications, dietary changes can have a marked effect on these patients. Many of these patients are insulin resistant or intolerant to carbohydrates. Carbohydrates contribute to inflammation, hormonal imbalances and neuropathy, all factors associated with POTS. In particular, gluten appears to be a trigger for many patients with POTS. I recommend a gluten and grain-free, low carbohydrate, high-fat diet similar to what is known as a ketogenic diet.
While there are no specific supplements that directly treat POTS, there are many supplements and nutrients that can be helpful in addressing underlying root causes and associated conditions. I already mentioned that salt intake needs to remain high and some patients find that they need to use over the counter salt pills if they can’t get enough salt in through their diet. There are a number of supplements that have natural antihistamine and mast cell stabilizing effects that can help underlying MCAS. Quercetin, Luteolin, and Vitamin C are just a few. Patients with POTS can be sensitive to medications as well as the fillers in medications, or excipients, so each intervention should be done systematically and one at a time.
The POTS and Lyme disease Connection
What is the connection between POTS and Lyme disease?
Lyme patients with POTS are also at risk for having other types of dysautonomia (autonomic dysfunction). The autonomic nervous system is responsible for involuntary processes in the body, like digestion, heart rate, blood pressure, urination, sweating, and control of body temperature. POTS patients often have gastrointestinal symptoms, some of which are due to a problem with motility in the gut, which is controlled by the autonomic nervous system. In some patients, gastrointestinal motility is too slow and in others it is too fast. Nausea, vomiting, getting full too fast, decreased appetite, constipation, abdominal pain and bloating are some symptoms associated with delayed gastric emptying. On the other hand, rapid gastric emptying can cause diarrhea and hypoglycemic episodes.
One study showed that 70% of POTS patients have issues with GI motility. If Lyme disease is the root cause of the POTS and GI dysmotility, treating the infection may result in improvement in these symptoms. Some patients, however, develop an autoimmune phenomena and/or mast cell activation syndrome, despite adequate treatment of the infection that will need to be addressed separately. I believe that the mast cell component is significant for many Lyme patients with POTS and identifying and treating MCAS can be a game-changer for them.
Intravenous immune globulin (IVIG) for POTS
I am happy to see that POTS Treated with Intravenous Immunoglobulin (IvIg) will be studied more formally, but there are many in the dysautonomia community that are using IVIG already.
My colleague Dr. Jill Schofield has published her data using IVIG for POTS and specifically for autoimmune dysautonomia.
Another colleague, Dr. Leonard Weinstock, published his data using IVIG and Low dose naltrexone for POTS and MCAS.
I am starting to use IVIG for POTS in my practice and hope to publish my own data at some point.
FINAL THOUGHTS ON POTS:
I would encourage patients to be persistent at getting to the root cause, even if they know they have Lyme it is important to identify other factors that can be associated.
It is equally important to identify the right treatment once the root causes are identified.
POTS can be very debilitating, but it is treatable, controllable and potentially reversible with the right intervention.
POTS & MCAS CONNECTION
Many POTS patients also have mast cell activation syndrome (MCAS) as a cause or contributing factor for their POTS, so addressing this can greatly improve POTS in these patients. There are a variety of treatment options for MCAS, but it is not uncommon to start with antihistamines as first-line.
Buttaccio, J. (2019, September 6). The Lyme POTS Connection: What You Should Know. Retrieved from https://rawlsmd.com/health-articles/the-lyme-pots-connection-what-you-should-know