The Lyme + POTS Connection: What You Should Know
By Jenny Lelwica Buttaccio
A racing heart, dizziness upon standing, fatigue, nausea, inability to focus. These are some of the hallmark symptoms of postural orthostatic tachycardia syndrome (POTS), a condition that’s thought to be relatively rare — it affects between one and three million Americans, mostly women ages 13 to 50, according to Dysautonomia International — and yet fairly common among those with chronic Lyme disease.
“I think everyone with chronic Lyme disease is going to have some of the symptoms of POTS, some more pronounced than others,” explains Dr. Bill Rawls, Medical Director of RawlsMD and Vital Plan. There can also be symptomatic overlap of POTS with other chronic illnesses that tend to go hand-in-hand with Lyme, like chronic fatigue syndrome (ME/CFS), fibromyalgia, and mast cell activation syndrome (MCAS).
Given these coincidences, many in the Lyme community wonder: Is there a specific pathogen implicated in this syndrome?
“When you look at the idea that POTS is associated with Lyme disease, it’s not surprising,” says Dr. Rawls. “But it may not be from Borrelia burgdorferi alone. There’s overwhelming evidence that there are other microbes at play — microbes are affecting the balance of all the communications in the body. We have a lot to learn before we can pinpoint a specific causative agent.”
So what exactly is POTS, and better yet, what can be done to reduce symptoms and improve your quality of life? Here, we’ll explore the complexities of POTS, and provide insights to help you cope and deal with this life-altering health condition.
What is POTS?
Postural orthostatic tachycardia syndrome is one example of dysautonomia, an overarching term that encompasses several medical conditions that impact the functionality of the autonomic nervous system (ANS). This part of the nervous system is responsible for controlling the automatic functions of the body, including blood pressure, rate of respiration, digestion, and more.
POTS itself is a complex array of symptoms that impact the body’s ability to circulate blood adequately. It’s different than the cardiac symptoms that can occur as a result of Lyme disease. To better understand, let’s look at a breakdown of the acronym POTS:
- Postural: Referring to the posture or position of your body
- Orthostatic: Pertaining to being in an upright position
- Tachycardia: The heart rate speeds up
- Syndrome: A combination of symptoms, which often occur together
Under normal circumstances, your heart rate and blood pressure work in tandem to maintain sufficient blood flow throughout your body, regardless of the position your body is in. But people with POTS have orthostatic intolerance issues, which means symptoms arise when they move from a lying position to an uprightone like sitting or standing.
They may feel dizzy, faint, or experience an increase in heart rate. POTS symptoms may even pop up in people who have been standing in one place too long without moving. People with the condition can’t synchronize normal blood vessel contractions with the heart rate, creating a fluctuating and unsteady blood pressure.
There are actually three main types of POTS that have been recognized among medical professionals, though the boundaries between the different types aren’t always so clear-cut:
- Neuropathic POTS: In some people, the cause of POTS may be attributed to nerve damage, which interferes with the ability of the blood vessels in the abdomen and lower extremities to constrict. The outcome? Blood begins to pool in the lower half of your body and doesn’t completely circulate back towards the heart and the brain.
- Hyperadrenergic POTS: Stress can aggravate POTS, says Dr. Rawls, especially an overactive sympathetic nervous system, which throttles your fight-or-flight response and increases levels of the stress hormone norepinephrine.
- Secondary POTS: This form of POTS can be triggered by an underlying illness or disease process such as Lyme, diabetes, or lupus, which can damage the nerves, diminishing blood flow from the lower body to the heart and head.
The list of POTS symptoms is admittedly long, so it might help to start by focusing on the most common ones. The following list comes from Dr. Tania Dempsey, Lyme Disease Specialist and Founder of Armonk Integrative Medicine in New York, who’s been treating patients with Lyme disease and a host of co-occurring conditions for the last 20 years. Notably, Dr. Dempsey observes POTS symptoms in approximately 50% of her patients, who are as young as 10 years old.
- Heart palpitations
- Dizziness, particularly with positional changes
- Difficulty concentrating
- Abdominal pain
- Decreased exercise tolerance
- Intolerance to hot or cold temperature
- Sleep disturbances
Beyond those, additional symptoms include:
- Brain fog and difficulty with memory
- Lightheadedness or feeling faint
- Noticeable heartbeats, heart palpitations, or changes in heart rate
- Chest pain
- Shortness of breath
- Flu-like symptoms
- Blurry vision
- Diaphoresis (profuse sweating)
- Decreased blood pressure after a meal (postprandial hypotension)
- Body aches and pains
- Flushed skin
- Shakiness or tremors
- Reduced volume of blood plasma
- Gastrointestinal distress such as diarrhea or constipation
Though symptoms can range from mild to severe, POTS can create a high degree of disability for some patients, as stated in a study in the Journal of Geriatric Cardiology. Everyday activities such as eating, taking a shower, and making low-intensity movements worsen the various manifestations of the syndrome.
Furthermore, POTS symptoms can escalate in heated conditions, in circumstances that involve standing for a while, or if you haven’t consumed sufficient amounts of fluids or salt. To add fuel to the fire, many healthcare professionals aren’t familiar with POTS or the testing that can be done to help diagnose it, but it’s not unusual for Lyme specialists to see POTS in conjunction with tick-borne infections.
How to Test and Diagnose POTS
There are many tests that a physician can do to diagnose POTS and other types of dysautonomia, says Dr. Dempsey, the primary ones being the standing test, small fiber biopsy, and blood work. If those don’t provide enough information to make a diagnosis, or if you have recurrent fainting episodes, you may need to see a POTS or dysautonomia specialist, neurologist, or cardiologists for additional tests.
The Standing Test
“This test 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,” Dr. Dempsey explains. “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:
In this minimally invasive procedure; skin is typically numbed using an injection of the anesthetic, Lidocaine, and then your healthcare provider uses a tool known as a punch to obtain a skin sample. The sample will be viewed under a microscope to evaluate the small sensory nerve fibers in the skin.
“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,” says Dr. Dempsey. In fact, the Mayo Clinic reported that the cause of more than 50% of POTS cases is due to small fiber polyneuropathy.
Blood work is useful to rule out the presence of other illnesses that have symptoms similar to those of POTS, autoimmune conditions, and other potential causes.
Tilt Table Test
This test can help figure out whether your symptoms are due to changes in your heart rate or blood pressure. You’ll lie flat on your back. After five minutes or so, you’ll be positioned in an upright position where your heart rate and blood pressure will be monitored, and you’ll report any symptoms that pop up. Your doctor may administer intravenous medication to provoke a response from your nervous system. When the test is complete, you’ll return to a horizontal position.
A Holter monitor is a portable device, which records the activity of your heart over a specific amount of time.
An echocardiogram creates images of your heart using sound waves. The pictures show the structures of your heart, such as chambers and valves, and it shows your heart beating as well.
Keep in mind that this is not a complete list of testing options for diagnosing POTS. Depending on the severity of your symptoms, your doctor might recommend other tests to gain a better understanding of what’s going on with you.
3 Types of Treatment Options
Like many chronic health conditions, there is no one-size-fits-all approach to treating Lyme disease or the symptoms of POTS, but identifying the underlying factors and triggers should be top of mind for healthcare providers, as stated in a review in the Indian Pacing and Electrophysiology Journal. Treatment can fall into several categories, including medications, herbal therapies, and lifestyle modifications.
No single drug will be useful to everyone, but if you have severe POTS, certain medications might be able to help you get a handle on your symptoms and improve your quality of life. In all likelihood, it will be a process of trial and error to find the right medication at the correct dose. Some of the drug possibilities include:
- Fludrocortisone: A synthetic corticosteroid that enhances the kidneys’ ability to retain sodium and increase fluid levels and blood volume.
- Midodrine: One of a class of medications called alpha-adrenergic agonists, midodrine increases blood pressure by encouraging the contraction of blood vessels.
- Clonidine: Belonging to a class of medications known as centrally acting alpha-agonist hypotensive agents, clonidine is most known for its ability to decrease high blood pressure. In POTS, however, it can help reduce sympathetic overactivity and stabilize blood pressure and heart rate.
- Beta Blockers: Beta blockers are a class of medications designed to regulate irregular heart rhythms and prevent heart attacks from recurring after you’ve already had one. It may be useful in the treatment of POTS by mitigating the impact of adrenal hormones on your heart and heart rate.
- Selective Serotonin Reuptake inhibitors (SSRIs): Though SSRIs are best known as antidepressants, they may be able to reduce fainting episodes in some POTS patients.
Of course, there are other drugs that might also be beneficial for treating POTS. But the effectiveness of drug therapy is likely to change depending on the type of POTS you have. Additionally, regimens using intravenous immunoglobulin (IVIG) and low-dose naltrexone (LDN) are promising treatment options for individuals with POTS symptoms that are resistant to other kinds of interventions, as suggested in research from the America Journal of Therapeutics and BMJ case reports.
2. Herbal Therapy
When you think of POTS, you might not be aware of the role herbs can play in lessening your symptoms and helping you heal. “There’s no doubt that herbal therapycan help,” says Dr. Rawls. “An herbal program that balances hormones and suppresses harmful microbes will affect POTS symptoms in a positive way.”
If you’re new to herbal therapy, herbal tinctures would be a great place to start, because you have the ability to control the dose and titrate it up as tolerated. Adaptogens are Dr. Rawls’ herbs of choice:
- Licorice: This herb restores and supports adrenal function. Licorice can be particularly beneficial for those with POTS because it helps you retain salt, which increases blood pressure and blood volume.
- Rhodiola: Sourced from around the world, rhodiola is a mildly stimulating herb, which supports cardiovascular function and immune health and protects the brain and nervous system.
- Eleuthero: Also known as “Siberian ginseng,” eleuthero can assist with contractions of the blood vessels.
- Ashwagandha: Native to India and Africa, ashwagandha is particularly useful in balancing the HPA axis in the brain, the control center for hormone regulation.
Herbs may allow a person with POTS to take less medication and reduce the side effects associated with other drugs,” says Dr. Rawls. “Also, I think it’s important to remember that herbs support the restoration and healing of the body.” Of course, if you’re interested in incorporating herbs into treatment protocol, talk to your healthcare provider.
3. Lifestyle Modifications
Adjusting your lifestyle can go a long way in helping you manage POTS symptoms, and many of these strategies are relatively inexpensive to follow.
- Avoid dehydration. “Drink at least 8-10 glasses of water a day, and take in up to 8-10 grams of salt a day,” advises Dr. Dempsey. Some people might find it challenging to consume this much salt through food alone. Instead, an over-the-counter salt pill can provide you with this crucial mineral for maintaining healthy fluid levels.
- Wear compression stockings. They improve blood flow in the lower extremities, thereby enhancing circulation throughout the body and easing some of the symptoms of POTS.
- Keep your stress levels in check. Unfortunately, any kind of stress can worsen your symptoms, says Dr. Rawls. He recommends mind-body techniques and exercises such as meditation, qigong, and gentle yoga to bring on the calm.
- Participate in the right kind of exercise. If you’re looking to take on more strenuous exercise, an upright, standing position could pose the biggest challenge for you. Symptoms such as tachycardia will intensify, and it can lead to exercise intolerance for some people. Instead, Dr. Dempsey lists a recumbent bike and rowing machine as better ways to build up stamina. Also, Pilates is a form of exercise that can be done in a lying or seated position to improve strength, stamina, and flexibility, and it can be modified to minimize the risk of worsening your symptoms.
- Be mindful of your diet. Strive to reduce environmental toxins in your food and beverages, and limit processed foods and refined carbohydrates. Dr. Rawls recommends eating organic whenever possible and filtering your water. Additionally, a ketogenic diet, which includes gluten-free, grain-free, low-carbohydrate, and high-fat foods, has proved helpful in Dr. Dempey’s patient population.
While it might seem overwhelming to combine a POTS diagnosis with Lyme disease or Lyme coinfections, Dr. Dempsey has some uplifting words for you:
“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. POTS can be very debilitating, but it is treatable, controllable, and potentially reversible with the right intervention.”
Clonidine. Medline Plus website.
3. Raj SR. The Postural Tachycardia Syndrome (POTS): Pathophysiology, Diagnosis & Management. Indian Pacing and Electrophysiology Journal</>. 2006 Apr-Jun; 6(2): 84–99.
4. Schofield JR, Chemali KR. Intravenous Immunoglobulin Therapy in Refractory Autoimmune Dysautonomias: A Retrospective Analysis of 38 Patients. American Journal of Therapeutics. 2018 May 14. doi: 10.1097/MJT.0000000000000778
Thieben MJ, Sandroni P, Sletten DM. Postural orthostatic tachycardia syndrome: the Mayo clinic experience. Mayo Clinic Proceedings. 2007 Mar;82(3):308-13. doi: 10.4065/82.3.308.
What is Dysautonomia? Dysautonomia International website.
What is a Holter Monitor? American Heart Association website.
Weinstock LB, Brook JB, Myers TL, Goodman B. Successful treatment of postural orthostatic tachycardia and mast cell activation syndromes using naltrexone, immunoglobulin and antibiotic treatment. BMJ Case Reports. 2018 Jan 11; 2018. pii: bcr-2017-221405. doi: 10.1136/bcr-2017-221405.