Ep 494 – Lyme Disease Aftermath: “I Have a Client Who . . .” Pathology Conversations with Ruth Werner

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0:01:09.7 Ruth Werner: Hi and welcome to I Have a Client Who... Pathology Conversations with Ruth Werner, the podcast where I will discuss your real life stories about clients with conditions that are perplexing or confusing. I'm Ruth Werner, author of A Massage Therapist Guide to Pathology, and I have spent decades studying, writing about and teaching about where massage therapy intersects with diseases and conditions that might limit our clients health. We almost always have something good to offer, even with our most challenged clients, but we need to figure out a way to do that safely, effectively and within our scope of practice. And sometimes, as we have all learned, that is harder than it looks.

0:01:56.1 RW: Dear listeners, I usually really love questions that don't have clear cut and dried answers. For me, these are the interesting ones. They provide fodder for curiosity and deeper thinking and all kinds of rabbit holes that might lead me into wonderful and unexpected directions. But sometimes those questions that don't have solid answers can just leave people feeling lost and without options. And that is too often the case in a situation like we see with today's I have a Client Who... Podcast in which we will address the aftermath of Lyme disease.

0:02:43.8 RW: I got this note through my Facebook business page which by the way is called Ruth Warner's Pathology page and I I would love for you to join me there. And here is what our contributors sent. They said, I would like to hear more about Lyme and how it can get worse and worse without treatment. I had a client who was an exercise coach who had been tested for Lyme by her doctor, but it was too soon after the bite for the test to show it. She was not tested again and came to me several years after this. She was disabled, had trouble using her hands, had dupuytren's contracture, had difficulty doing anything and relied on her husband for almost everything. I encouraged her to get tested again but her doctor was not supportive. She finally went to a naturopath and paid out of pocket for the whole thing.

0:03:29.6 RW: She was tested and they found two to three tick-borne diseases. She received antibiotics and herbs and finally was getting better. I also know that everyone is different and sometimes they cannot tolerate body work while having Lyme or being treated. One woman came to me twice and had uncontrolled diarrhea each time for several days which was humiliating for her and she just stopped coming. But some people are helped by bodywork while having Lyme. Can you explain why this is? I also just heard from a colleague who has tested positive for Lyme but the specialist says it's too late for antibiotics. I can't believe it. I know a woman whose mother died of Lyme after it got into her bloodstream. She wasn't treated soon enough. Would love to hear more about your knowledge on this subject. Thank you.

0:04:22.3 RW: Well, thank you contributor. I too would like to hear more knowledge on this subject, but frankly, although I've actually done a lot of poking into this topic, my knowledge doesn't amount to a lot. For the balance of this podcast, I'm going to pull heavily from an article I wrote for Massage and Body Work in 2022 and of course there will be a link in the show notes. For that article, I had the honor of interviewing a person who had some very serious repercussions of her interaction with Lyme disease, but her experience doesn't match the experiences that have been shared by today's contributor. And of course that's one of the big challenges. It looks different in every person who has a problem.

0:05:10.4 RW: But first we need to back up and talk about what Lyme disease is. You may be aware that Lyme disease is a bacterial infection. It is spread through the bites of certain species of ticks. You may be less aware that areas where deer ticks or the other Lyme disease carrying ticks hang around may also be blessed with the presence of ticks that carry other tick-borne diseases. And some individual ticks can carry multiple species of bacteria too. The upshot of this is that people can be co-infected with multiple tick-borne diseases all at the same time, which may be one explanation for why some people seem to respond really well to Lyme disease treatment and others do not. The tendency is to assume that Lyme disease is the only cause of their symptoms and the possibility that the infection might be something else.

0:06:02.5 RW: Babesiosis, anaplasmosis, Rocky Mountain spotted fever, Ehrlichiosis, or a whole bunch of others. Or some combination of those things sometimes doesn't occur to the healthcare team. The bacterium that causes Lyme disease is called Borrelia burgdorferi. Say that with me. Borrelia burgdorferi. And the whole story of Dr. Burgdorfer and how he figured out the causative factor of Lyme disease is just fascinating, but sadly not relevant to today's discussion. So I will leave that for you to explore on your own. When an infected tick takes a blood meal from a new host, it regurgitates its gut bacteria into the bloodstream of that host, including humans.

0:06:53.0 RW: It can take a while for symptoms to develop. Very often a person will develop signs and symptoms of Lyme disease without having any memory of a tick bite at all. And sometimes the blood work is just inconclusive. When we look at a blood test to check for the possibility of Lyme disease, we might see antibodies to Borrelia, but there's really no way to know whether that infection is something recent or something long ago. And all of this makes Lyme disease surprisingly difficult to diagnose. This bacterial infection moves through the body in stages, and that can involve joint pain and a type of very severe arthritis, which is why Lyme disease is often discussed as a musculoskeletal disorder.

0:07:37.7 RW: But if there's a serious aftermath, this can cause all kinds of damage in the body, including to the central nervous system. So people may get brain fog or migraines, or numbness or tingling or weakness. There's even some controversy about what to call call this situation. Some people call it post treatment Lyme disease syndrome, some people call it chronic Lyme disease. We don't even know if these two things are the same thing. What we do know is that late Lyme disease or long term Lyme disease can involve migraines and other severe headaches, mental fogginess, muscle and joint pain, vertigo, tremors, depression, anxiety, dizziness, arrhythmia, nerve pain, sleep disruptions, and so much more.

0:08:30.2 RW: But take a moment and review that list of signs and symptoms. When you hear things like muscle and joint pain and headaches and anxiety and nerve pain, what does that make you think of? If hearing this list of signs and symptoms makes you think about chronic fatigue syndrome or long COVID or fibromyalgia, you are not alone. And almost everyone I've ever spoken to who identifies as having long term Lyme disease has had to work with medical professionals who want to treat them for virtually anything on that list and not surprisingly, it doesn't work out very well.

0:09:09.4 RW: So what are the options for someone who lives with this aftermath of Lyme disease? Whether it's been treated or not. Most experts agree that the sooner treatment can be administered for Lyme disease, the better the long term outcomes are. But as we've seen, it can be difficult to know when a person is in early stage Lyme disease, so it's not unusual for people to miss this window for the benefits of early treatment. The conventional medical approach to long term Lyme disease usually involves some combination of graded exercise, sleeping aids, low dose antidepressants, anti seizure drugs for chronic pain and cognitive behavioral therapy.

0:10:00.3 RW: There are also some protocols involving high doses of long term antibiotics and for some people this seems sometimes to offer some relief. But for a lot of people this has really harsh side effects and is not the best or safest treatment option. Returning to the clients who were described at the beginning of this discussion, we see a variety of challenges. The first patient's early test came up negative. She was not tested then until several years later. By then she was disabled, having trouble using her hands, she had Dupuytren's contracture, she had difficulty doing anything.

0:10:34.5 RW: She relied on her husband for almost everything. She went to a naturopath and paid out of pocket to be tested. They found two to three tick-borne diseases. She got specialized antibiotics and herbs and then finally began to see some improvement. This is wonderful for her and I hope she continues to improve. But finding a competent doctor, naturopath or otherwise, and being able to pay out of pocket is simply not within reach for an awful lot of people who may really be struggling with the after effects of this bacterial infection. Our contributor described another client who had a severe reaction to massage, ending up with diarrhea and this happened twice. So the client never pursued massage any further. How did that happen? Truthfully, we really have no idea. It could have had something to do with her internal chemistry, her vagus reactions, inflammatory processes in response to this long term low grade bacterial infection. Who knows? We also heard a story about a person who was infected with Lyme disease who died and this was probably related to sepsis. And that's a situation where an infection may prompt a system wide and potentially deadly inflammatory response that can shut down the organs and eventually causes death.

0:11:56.7 RW: Here's a short description of the person I interviewed for my 2022 article. At age 28 she was energetic and athletic. She was a first grade teacher. That summer, she attended a family event at a park where they knew there were ticks. A few weeks later, she got really sick and the first thing she noticed was fatigue and a dangerously slow heart rate. She had no rash. She had no swelling. Her primary care physician did not test her for Lyme disease, and so she did not take the early course of antibiotics. Well, things got progressively worse for her. She developed dizziness and fatigue and peripheral neuropathy. She developed blinding migraines. The drug she was prescribed to treat the migraines made it impossible for her to function. She ended up quitting her job and was housebound for two years. She finally consulted a physician who, without examining her, recommended several months of intense antibiotic therapy. By this time, she felt she had nothing to lose and she complied. This physician turned out to be skeevy and ended up having his office raided and being shut down. These drugs permanently damaged her digestive tract. However, she also turned a corner and finally began to improve.

0:13:20.3 RW: Now, many years later, she continues to have some problems, but is raising her family. And she has an active and demanding job. And she's doing well. Is that because this intense antibiotic therapy prescribed by her iffy physician worked? Would this just have been the natural course of her disease process? It's hard to say. I wish I could say here that we have an absolutely firm idea of what's going on with long term Lyme disease and we have a really good and reliable treatment option that works with most people so that we can limit this problem, it can be minimized, and folks can return to full capacity for a joyful and active life as soon as possible. But we're not there. Given that chronic Lyme disease looks so different in each individual, it's hard to give any hard and fast advice about massage therapy. It's important to be aware that this condition can alter sensation. It can have an effect on the cardiovascular system. These are situations that call for specific adjustments or accommodations with massage therapy. Beyond that, the real question, as it always is, is what would you like to achieve with your massage today? I've interviewed a number of people who were absolutely sidelined by chronic Lyme disease and they needed very conservative and gentle massage to avoid being overtreated.

0:14:46.6 Speaker 1: And I've spoken to several people who had chronic Lyme disease and are now fully functioning. And when they receive massage, well, they might want a session that focuses on their knee pain or their temporary insomnia or the stress of raising a teenager. But this has nothing to do with their situation with Lyme disease. This is just by way of reminding us that a person's disease is not who they are and decisions about massage therapy must be made based on what that person wants and needs in the moment. That has to incorporate the challenges that they have with their health, but it doesn't have to be 100% guided by the those limitations. So for those of you who would like a specific massage therapy protocol that will cure or fix long term Lyme disease. Yeah. Sorry to disappoint you, you won't find it here. What you will find is some ideas about important follow up questions to ask and support and enthusiasm for your compassionate work that makes the world a better place.

0:15:58.5 RW: Hi friends. Ruth Werner here to talk about my current absolute favorite online self paced continuing education class. And bonus. It is NCBTMB approved for Ethics credit too. It's called A Doctor's Note Is Not Good Enough and what is Better. And in this fun for all, we go through why we think doctor's notes Matter. Spoiler alert. They don't do what you think they might do. And we talk about how to set up lines of communication that will get you what you really need. Information to help you make good clinical decisions. Please join me for A Doctor's Note is Not Good Enough and what is Better? You. You can do it anytime. That works for you and anywhere you have WiFi. Visit me at ruthwerner.com to register today.