Living with Lyme Arthritis: My Journey

Chronic joint pain was not something Shona Curley expected after her Lyme diagnosis. Here’s how she’s learned to control pain and inflammation, including a video demo of foam rolling exercises for sore muscles.

Lyme disease, and in particular Lyme-related arthritis and joint pain, is personal for me. I was bitten by a nymph, blacklegged deer tick in 2014. Blacklegged ticks are known to sometimes carry Borrelia burgdorferi, the bacteria that causes Lyme disease. A nymph is a baby tick, about the size of a poppy seed. Nymph ticks can also carry Lyme.

I developed symptoms – including joint pain – over the next two years. Although I tested negative for antibodies to Borrelia burgdorferi through the standard ELISA test with my primary care doctor, I became sick enough that I had to take a leave of absence from teaching at my Pilates studio. I stayed home, rested, and sought more testing and treatment with a private specialist.

I was diagnosed with Lyme by a second, more sensitive test – The Western Blot  – in 2017 and began treatment with IV antibiotics and supportive nutritional IVs right away. Now, three years later, I am almost symptom-free, although I am still treating the infection.

I’ve learned a lot about Lyme since then, especially about how to work with the arthritic joint pain that is so common to Lyme patients – technically called Lyme arthritis. I am also grateful to be able to work with other people who have Lyme disease-related joint pain in my Pilates studio in San Francisco (Hasti Pilates) and online, to help them manage and, hopefully, lessen their pain.

I hope to use this space to share what I’ve learned, including what causes Lyme arthritis, what herbalists and naturopaths suggest to mitigate the joint pain, when to seek testing if you think your joint pain may be related to Lyme disease, and how I get by day-to-day with a few home-based strategies.

iStockPhoto (stefanamer)Approximately 30,000 new cases of Lyme are diagnosed each year, according to the CDC, and just over one-third of them develop arthritis pain as a symptom - with the large joints affected most.

Lyme Disease and Joint Pain: It’s Complicated

For starters, Lyme is complicated and every patient responds to the disease differently.

Approximately 30,000 new cases of Lyme are diagnosed each year, according to the CDC, and just over one-third of them develop arthritis as a symptom. The most common symptoms beyond the bullseye rash are chills, fatigue, headache/neck stiffness, fever. Painful and swollen joints—especially in large joints such as the knee—are often considered a late-stage symptom of Lyme, but can appear even days after the tick bite.1-3 Some individuals may find out they have Lyme as a result of chronic joint pain—without ever knowing they had a tick bite. (Read more about Lyme symptoms and disease stages.)

 

Ticks rarely carry just one strain of bacteria. They usually deliver several different species of bacteria and parasites in one bite – these are called co-infections. Co-infections are one reason Lyme disease diagnosis and treatment can be so complex and difficult.

To investigate why joint pain is a common symptom of Lyme disease, I spoke to Thalia Farshchian, ND, a naturopathic doctor practicing at Medical Options for Wellness, a clinic in Foster City, California. She specializes in treating patients affected by chronic and complex diseases, including Lyme disease. 

“It is estimated that about 70% of individuals presenting with (the typical Lyme) bullseye rash do not recall a tick bite," she said. "It is important to note that the absence of a rash does not rule out Lyme Disease as diagnosis, but may be supportive of the diagnosis."

In terms of joint pain, Dr. Farschian shared that, “Many of our Lyme disease patients experience joint pain to varying degrees as a result of inflammation. Borrelia has an affinity for joints and can lead to deterioration of collagen in tissues." She further explained, "Joint pain in Lyme patients often migrates from one joint to another, without an obvious external cause. Lyme patients also commonly experience neck and shoulder stiffness and/or pain. In those with previous injuries, the inflammation from Lyme disease can particularly affect already weakened areas.”

This is consistent with what I’ve noticed in myself and my clients with Lyme. My worst pain from Lyme was in my neck, where my natural curve has, for some reason, always been flattened – and therefore vulnerable. Second to that was pain in my left hip, where I have an old injury and corresponding weakness from my days as a modern dancer.

For all of my clients with Lyme-related pain, symptoms are most aggravated in misaligned or injured joints, just as Dr. Farshchian describes. Working to realign and balance these affected joints can help to alleviate pain (see more below).

 

iStockPhoto (hailshadow)Hyaluronic acid and a low sugar diet may help reduce joint-related pain and inflammation stemming from Lyme disease.

Managing Lyme Arthritis Pain: Can Herbs Help?

Stephen Harrod Buhner is a well-known herbalist and author who specializes in the treatment of Lyme disease and co-infections. His book, Healing Lyme, Natural Healing of Lyme Borreliosis and the Coinfections Chlamydia and Spotted Fever Rickettsioses, is based on extensive research on Lyme disease and was the first book I bought after my Lyme diagnosis.4 It offers an exhaustive description of what occurs during Lyme infection, as well as a detailed herbal protocol that I’ve been following for the past 3 years.

Buhner writes that Lyme joint pain is caused by the way Borrelia burgdorferi interacts with joint spaces in the body. According to Buhner’s book, “The most important thing to understand about Lyme disease is that the bacteria have an affinity for collagenous tissue. This is at the root of every symptom they cause... Wherever (Borrelia burgdorferi) feed on those tissues is where the symptoms occur.”

Joints are largely composed of collagen; both cartilage and synovial fluid are collagenous structures. Lyme bacteria break down and eat collagen wherever they lodge. As you can imagine, this leads to inflammation and pain.

Lyme can plant itself into any collagenous tissue in the body – meaning it can infect any joint space. It can also choose the myelin sheaths around nerve tissue in the brain or spinal cord, also made of collagen. This results in neurological symptoms, and is another reason Lyme patients’ symptoms and pain are so different.

Buhner further writes that the first line of defense against Lyme disease, beyond attacking the bacteria directly, is to protect the body’s collagenous structures. These actions can disrupt the bacteria’s ability to find “food,” and ideally starve it. Buhner describes in detail several herbs and supplements in his book that assist with protecting collagen. I’ve found his recommendations to be very helpful.

One of his suggestions specific to Lyme arthritis is to take the supplement hyaluronic acid, which has been shown to stimulate human fibroblast proliferation. (Fibroblasts are the cells responsible for creating collagen and hyaluronic acid may help the body create collagen.) In the case of Lyme arthritis, hyaluronic acid may help the body replace damaged collagen as part of the healing process.

If you try any of Buhner’s suggestions, just remember to discuss any new protocol with your doctor first, especially as certain supplements may interact with medications you may already be taking.

 

Diet & Targeted Exercise Can Help Lyme-Related Joint Pain

If you have Lyme disease, discuss a protocol for killing the bacteria with your doctor. Of course, this is imperative for eliminating symptoms.

That said, most Lyme protocols take time, and there is much more you can do during treatment to mitigate symptoms of pain.

For instance, Dr. Farshchian’s clinic advises people with Lyme arthritis to decrease any environmental factors that may contribute to inflammation, such as mold exposure or mast cell activation (an excessive release of the chemical, histamine, causing allergic and inflammatory symptoms). “Addressing (these) common comorbidities often makes a significant improvement in symptoms,” she says. In addition, her clinic aims to help patients reduce inflammation “organically through diet, lifestyle, anti-inflammatory herbal supplements, medications, light therapy, Epsom-salt baths, and exercise.”

In my experience and that of my clients, all these approaches can be helpful. Below are a few of my favorite strategies. 

1. Rolling with a foam roller

One thing you can easily do at home is to roll tight tissue in your body with a foam roller. This helps to lengthen and release tension in your fascia, or connective tissue. (Fascia includes the connective tissue that sheaths each muscle, and also the tendons and ligaments.)

Rollers are inexpensive and available online. Just play with gently rolling the muscles surrounding painful joints, or really any sore muscles at all, with the roller. If you need ideas for how to experiment with this, this video demonstrates my favorite ways to roll.

2. Gentle strengthening

I’ve found with myself and my Lyme clients that gentle strengthening of the muscles that support joints affected by Lyme arthritis can help lower inflammation and decrease pain. This kind of strength work is unique to each person. For example, if a client has pain in her knee, I experiment to see which of the muscles that attach to the knee are weak and seek to strengthen them in a way that alleviates pain.

Strengthening takes time and patience but is almost always helpful. It’s worth finding a qualified physical therapist or Pilates teacher to help you with this kind of work.

 

3. A low sugar diet

A diet low in sugar is considered to help to decrease systemic inflammation. For me, a strict limit of no more than 100 grams of carbohydrates daily works like magic. This response is called “mild ketosis” and there is an ocean of information available online about how it works (think, Ketogenic diet).

Animal-based studies have shown that a ketogenic diet reduces reactive oxygen species in the brain (reactive oxygen species contribute to inflammation). If you’re interested in learning more, look into the Wahls Protocol, which features dietary recommendations developed by Terry Wahls, MD, a doctor who greatly improved her symptoms of multiple sclerosis with diet.5

When I first tried the Wahl’s Protocol (before I knew I had Lyme), my symptoms, including pain, decreased by 80% after 1 week. I’ve been limiting my sugar intake ever since. (It’s not as bad as it sounds!) However, everyone is different and having too few carbs in your system can cause other side effects such as fatigue or headache. Talk with your doctor, and experiment with decreasing sugar intake in a way that works for you.

 


When to Consider Testing for Lyme

You might be wondering if your joint pain could be related to Lyme disease, especially if you’ve had a blacklegged tick bite in the past.

The CDC estimates that a staggering 90% of cases of Lyme disease may go undiagnosed in the US each year. So while approximately 30,000 reported cases of Lyme reported annually, as noted, the actual number of cases may be closer to 300,000.

Lyme disease is often called “the great imitator,” because it mirrors many other diseases. These include, but are not limited to, osteoarthritis, rheumatoid arthritis, and multiple sclerosis. Unfortunately, unless you live in an area considered Lyme endemic, such as the northeastern United States, most conventional doctors may not think to test you for Lyme. (As a California resident, I learned this quickly.)

If your symptoms include (but are not limited to) waxing and waning flu-like symptoms, brain fog, fatigue, or joint pain, and if you think you may have had a tick bite in the past, consider asking your doctor for a test for Lyme disease. Remember that some people with Lyme experience have all of the above symptoms and more, while some experience just one. Also be aware that the ELISA test commonly given by conventional doctors is not always accurate, as it tests for antibodies that may or may not be present at the time of testing. My initial ELISA test came back negative; it had been a year since my initial tick bite but my symptoms were in full force.

Another word of warning: If your ELISA test comes back negative, your insurance company may not pay for further testing via the Western Blot or Immunoblot test. If you still suspect you have Lyme, consider working with a specialist. You will likely have to pay for at least some testing and treatment out-of-pocket, but in my opinion, an accurate diagnosis is worth it.

Lymedisease.org, an organization that spreads awareness and information about Lyme disease, can help you find a specialist in your area. Do your research and choose someone you trust.

 

Be Ready for Trial and Error

Lyme-related joint pain takes time to both diagnose and treat. In the meantime, there are many things you can do to decrease inflammation and pain. As every Lyme patient is different, try not to get too frustrated if what works for someone else doesn’t work for you. Be patient as you experiment with diet, herbs, exercise, alignment, and releasing tight fascia. You will find tools that help you. Reach out and surround yourself with people who understand you and are on your side. We are all healing together.

 

 

 

 

 

Updated on: 07/23/20
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Living and Thriving (Finally) With Lyme Disease
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