Coping with POTS in conjunction with chronic Lyme disease
By Jenny Lelwica Buttaccio, RawlsMD.com
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, according to Dysautonomia International, most of whom are women ages 15 to 50 — and yet, it’s fairly common among those with chronic Lyme disease.
“I think everyone with chronic Lyme disease will have some of the symptoms of POTS, some more pronounced than others,” explains Dr. Bill Rawls, Medical Director of RawlsMD and Vital Plan.
Besides Lyme, there can also be a symptomatic overlap of POTS with other chronic illnesses like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia, and mast cell activation syndrome (MCAS). For those battling long COVID, POTS may also be a recurring symptom.
Given these coincidences, many in the Lyme community wonder: Is there one 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’s likely not from Borrelia burgdorferi alone.” Because POTS has been observed in people after both bacterial and viral illnesses, there’s overwhelming evidence that other microbes are at play.
“Microbes affect the balance of all the communications in the body— right down to the cellular level,” says Dr. Rawls. “So 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 affect the body’s ability to circulate blood adequately. It’s different from 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: Refers to the posture or position of your body
- Orthostatic: Pertains to being in an upright position
- Tachycardia: References the increase in heart rate
- Syndrome: Consists of 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 your body’s position. But people with POTS have orthostatic intolerance issues, meaning symptoms arise when they move from lying down to an upright position.
They might feel dizzy, faint, or experience an increase in heart rate. POTS symptoms may even creep up in people who have been standing in one place too long without moving. The mechanical system for how blood circulates throughout the body has malfunctioned in people with POTS.
There are various subtypes of POTS that have been recognized among medical professionals, though the boundaries between the different types aren’t always so clear-cut:
- Partial dysautonomic or 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. A study at Mayo Clinic reported that more than 50% of cases reviewed during a 10-year period were due to neuropathic POTS.
- Hyperadrenergic POTS: This form of POTS is marked by an increase in the stress hormone norepinephrine, and the sympathetic nervous system, the part of the ANS that’s responsible for the flight, fight, or freeze response to dangerous situations, is in a state of overdrive.
- Hypovolemic POTS: Individuals with this type of POTS have low blood volume, which can trigger a range of symptoms.
- Secondary POTS: POTS of this nature may be caused 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 the AIM Center in Purchase, New York, who’s been treating patients with Lyme disease and a host of co-occurring conditions for more than 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 someone with POTS might have include:
- Brain fog
- Memory issues
- 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 review in the Journal of Geriatric Cardiology. Everyday activities such as eating, taking a shower, and low-impact fitness routines may worsen 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 conventionally-trained 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 for 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 are the standing test, tilt table 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 cardiologist 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.”
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 on a table, and the table will be tilted upright at different angles while your heart rate, blood pressure, and oxygen levels are monitored for changes. Safety straps may be used to prevent you from falling when you’re close to an upright position. During the test, you’ll also report any symptoms that pop up.
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.
Blood work is useful to rule out other illnesses that have symptoms similar to those of POTS, such as autoimmune conditions and other potential causes.
A Holter monitor is a portable device that records the activity of your heart over a specific period of time.
An echocardiogram creates images of your heart using sound waves. The pictures show the structures of your heart, such as the chambers and valves, and it also shows your heart beating.
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 better understand 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 POTS, but identifying the underlying factors and triggers, such as Lyme disease and co-infections, should be top of mind for healthcare providers. Treatment can fall into several categories, including medications, herbal therapies, and lifestyle modifications.
No single drug will be helpful 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 decreasing high blood pressure. In POTS, however, it can help reduce sympathetic overactivity and stabilize blood pressure and heart rate.
- Phenylephrine: An oral decongestant, phenylephrine may help to improve blood circulation and positional changes in people with POTS.
- 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 beneficial for treating 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.
Other drugs might also be beneficial for treating POTS, and 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 resistant to other kinds of interventions, as suggested in research from the American Journal of Therapeutics and BMJ case reports.
When you think of POTS, you might not be aware of the role herbs can play in lessening your symptoms and helping you feel better. “There’s no doubt that herbal therapy can help,” says Dr. Rawls. “An herbal program that balances hormones and suppresses harmful microbes will affect POTS symptoms in a positive way.”
Herbal tinctures would be a great place to start if you’re new to herbal therapy because you can 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 that 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 your treatment protocol, talk to your healthcare provider.
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.”
Dr. Bill Rawls is a physician who overcame Lyme disease through natural herbal therapy. You can learn more about Lyme disease in his book, Unlocking Lyme. You can also learn about Dr. Rawls’ personal journey in overcoming Lyme disease and fibromyalgia in his popular blog post, My Chronic Lyme Journey.
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