Dr. Kyle Warren
Meghan Feir Walker
As anyone living with Lyme disease can tell you, it’s a grueling struggle for the mind, body, and will. It takes a major toll on the people suffering from it, and it affects their loved ones, too. From family and social life to work and everyday tasks, Lyme impacts every area of life.
I want to shed some light on what it’s like for people living with chronic Lyme/post-treatment Lyme disease syndrome (PTLDS), along with spreading hope. Lyme can be overcome, but while the battle rages on, here are some tips my family and patients have found useful for managing symptoms, finding support, and moving forward in your Lyme recovery.
How long does it take for Lyme to go from acute to chronic?
When Lyme isn’t caught early enough or the treatment doesn’t take care of the problem, acute Lyme disease can enter a chronic state when left untreated. So, just how high is the risk of acute Lyme turning into chronic Lyme?
Results in recent studies showed that functionally impairing persistent symptoms occurred in 10-14% of the early-treated Lyme disease patients. This means 10-14% of people who found the bug on them, caught the infection, and got on antibiotics right away still developed long-term symptoms.
Even if you’ve had the two to four weeks of doxycycline and caught the infection early, keep an eye on your symptoms. If you start developing odd symptoms, your Lyme infection may have entered a chronic state.
What it’s like living with Lyme disease
Chronic Lyme disease/PTLDS is an incredibly frustrating, physically and emotionally draining disease. Almost everyone who comes to my office for the first time is so discouraged and drained. They’ve tried numerous doctors/specialists, protocols, and methods and have spent substantial sums of money trying to get help, but to no avail. They’re usually just getting by as they try to find answers, live a strict lifestyle, and balance home, work, and social life. Others have become so debilitated that they can’t juggle the busyness and demands of life any longer and need a caretaker.
While the symptoms and effects of Lyme disease can seem endless, typically, the main symptoms we see are extreme fatigue, chronic pain in the joints, muscles, neck, and head, and intense neurological symptoms. In my practice, about 80% of my patients are dealing with neurological Lyme.
While some people with Lyme feel terrible 100% of the time, for others, certain symptoms ebb and flow. From intense brain fog to painful nerve pain, flu-like aches and pains, to extreme fatigue, digestive issues, to major neurological problems, and mood swings and anxiety, to depression and hopelessness, the symptoms Lyme can create make it extremely difficult to live life normally.
You may have a day where you feel better than others, but then the symptoms return with a vengeance. The roller coaster of Lyme’s effects can vary from day to day, hour to hour, making it extremely difficult to plan ahead. This can also make it challenging for loved ones and other people in your life to understand how you may be able to do something one day and then the next you can’t. This causes extra stress and anxiety in the person with Lyme.
Lyme patients often feel misunderstood, ignored, and gaslit by family, friends, coworkers, and doctors, making the emotional turmoil of the disease even greater. Many are told, “It’s just anxiety” or that they’re psychosomatic (making symptoms up/a hypochondriac), making life with Lyme even harder.
Tips for living with Lyme
Communication is key
Good communication is key to making Lyme a little less frustrating for you and the people in your life. If you have a family, significant other, or someone who’s helping take care of you, communicate to them very clearly if you're having a good day or a bad day.
When my wife was sick with Lyme (and other co-infections) for seven years, we had kids to take care of as well, and while we had to make some accommodations, we did our best to try to live life as normally as possible. It made it easier to know if she was having an extra bad day, so I knew how much extra help was needed. If we were at a social or family gathering, it was helpful when she would tell me, “Hey, I'm having a tough time right now.” Then I knew it was time to go.
Balance your activities and schedule
Another self-care tip: Don’t overbook yourself, but don’t isolate yourself either.
Most Americans have jam-packed schedules that would drive anyone to burnout, let alone if you’re struggling with Lyme. Make sure you aren’t overtaxing yourself. At the same time, you need to find a balance. If you lock yourself away, the isolation will only make you feel worse and stall your healing. Plus, if you cut everything out, life becomes miserable.
Balance may look like going to church every week, but not overbooking your weeknights, or going to a family event for a little while, or meeting up with a friend for tea or coffee every now and then. It might look like taking a short walk every day, but not doing tough workouts.
On days you feel a little less terrible, don’t overdo it, but do something. Living a completely sedentary lifestyle leads to problems of its own, like depression, energy issues, weight gain, and loneliness.
Forgive yourself and your body
One thing many patients with chronic health issues deal with is hate and anger toward their bodies.
This continual disappointment over the limitations you face takes a mental and physical toll on your already stressed system, so try to give yourself some grace.
While it may not feel temporary, especially if you’re someone who’s been dealing with Lyme for years or decades, know that there is hope for recovery. Stop putting yourself down. Try to think of how much your body has fought against, and be grateful it’s been as strong as it has, even if you feel nothing but weakness, frustration, and pain. Your body just needs some extra help against these intruders, and when you find the right answers, your body will finally be able to recover and heal.
Strategies for symptom management
When you have chronic Lyme, you should strive for rest, movement, mindfulness, and reducing stress while eating an anti-inflammatory diet. Since Lyme is such a huge driver of inflammation, any way you can lower your inflammation will help you manage symptoms more effectively.
Mind-body therapies
Whether it’s journaling, prayer, Tai Chi, yoga, meditation, deep breathing, or other relaxing and beneficial therapies, these practices can help release built-up stress and tension in the body and the mind.
Sleep hygiene: why quality rest is nonnegotiable
Lyme disease creates sleep problems, and not being able to get quality sleep exacerbates Lyme symptoms. It’s a vicious cycle.
With Lyme, it’s common to feel drained, no matter how much or how little sleep you get. That being said, getting sleep is crucial for healing, and there are a few things you can do to increase your chances of getting more restful sleep.
- Turn off all screens at least an hour before bed.
- Get some movement in during the day, if you can, though that can be hard due to post-exertional malaise.
- Consider trying magnesium threonate or ashwagandha (or other adrenal-supporting herbs) to see if that helps calm the body enough to fall asleep.
For more tips on how to get a better night’s sleep, click here.
Low-impact movement vs. joint stress—what works for flares and calm days
How much exercise or movement should you do when you have chronic Lyme?
My patients often experience what I call push-crash syndrome. The medical term for this is called post-exertional malaise. It’s when you think you can do something, but then your energy quickly crashes, and it takes days to recover.
Because of this, you want to avoid intense workouts. In our clinic, we encourage our patients to do low-impact exercises regularly. Depending on your current capacity, this could look like swimming and biking, or just going for a short walk or stretching.
The point is to incorporate some kind of physical activity into your everyday schedule to help your body strengthen and heal. This isn’t the time for hardcore workouts and CrossFit, but being sedentary all day, every day will only hold you back in the healing process. You have to move in order to heal the body.
Eat an anti-inflammatory diet
I used to stress the particulars about diet much more than I do now with Lyme patients. However, although I’m not as strict as I used to be in this area, it’s still important. You want to make sure you aren’t continually adding more inflammation to your body through what you eat and drink. It’s not about being perfect. It’s about making primarily good meal and beverage choices throughout the day.
Here are some diet guidelines to consider following:
- Remove processed food and excess sugar
- Eat organic as much as possible
- Eat plenty of fruits and vegetables
- Get enough Omegas/fish oil
- Get enough healthy protein
To learn more about Lyme disease and your diet, click here.
What we wish patients knew
Ticks don’t just hang out in forests
Many people assume they have no need to worry about tick infections based on what they’ve done, where they’ve gone, and where they live, but as ticks and their infections spread across America and the world, making these assumptions isn’t wise.
Anywhere there are deer or birds and other animals that travel, there are ticks. And getting a tick on you isn’t relegated to forests and woods. Tall grass—even the grass in your backyard—can host these vile creatures. Many of my patients have gotten tick bites from being in their garden or sitting on a chair in their yard, so you don’t have to be hiking or lying in a patch of tall grass to be visited by a tick.
Also, please keep in mind that all your pets can transfer ticks to you and your house after they’ve been outside.
Lingering symptoms
One of the most frustrating parts about living with Lyme is medical gaslighting.
Although the CDC and NIH acknowledged that chronic Lyme is real in 2022/2023, practically speaking, I haven’t seen a change yet in how the medical community handles Lyme patients.
While there is more research happening, the guidelines haven’t changed, and the gaslighting has continued.
If you’ve ever walked into a doctor’s office and explained your symptoms (and possibly even mentioned your symptoms align with Lyme) only to have said doctor tell you, “It’s only anxiety,” “It’s all in your head,” “Chronic Lyme disease isn’t real,” “I’m not going to test you for Lyme,” and/or other horrible comments and conclusions, you’ve experienced medical gaslighting.
It's extremely distressing, ping-ponging through the medical system from one specialist to the next and being left with more questions than answers. This is why finding a Lyme doctor and having them run a full tick-borne illness panel is so important.
There are multiple specialty lab companies that are running more thorough, advanced tick panels that test for more than one species of Lyme and multiple species of various co-infections. Testing for all of these species and strains is a necessity.
Best tick disease testing companies:
- Vibrant Wellness (our favorite)
- IGeneX
- DNA ConneXions
- Galaxy Diagnostics
How long does it take to heal from chronic Lyme?
For 90% of my patients, it takes between 6-18 months to recover from Lyme. Some people are quicker, others are slower. It all depends on the unique things your body is dealing with and if you have other co-infections and conditions.
Other Lyme doctors may give you different timeframes, but I have asked every Lyme doctor I've talked to at conferences in the last decade, and, for the most part, they always say it takes 6 to 24 months.
Healing is a gradual process. You don’t want to rush ahead because it doesn’t work well for you or your outcome. Accept that healing usually takes some time, but that you’ll gradually regain your life, piece by piece.
I was just talking with one of our previous patients and asked how he’s been doing since the Lyme protocol he was doing with us. Although he was sick for almost 10 years, he's so healthy now. He was telling me about all the things he’s doing that he wasn’t able to do for so many years. For him, along with many of our patients, healing was a gradual process, but he did heal.
I had a patient whose motion sickness was so bad that they could barely ride in a car or sit in a chair without getting dizzy, who is now able to hike up a mountain and ride in a boat.
I get this kind of feedback frequently. I've seen hundreds of people beat Lyme disease and go forward and live a healthy, great life, which is why I firmly believe there's a way for your body to recover and heal, too.
While it can take time, patience, and persistence, you can live your life again and feel well.
For best results, work with a Lyme practitioner
One of the most important things for overcoming Lyme is to work with a medical practitioner who knows how to get people better.
There are a myriad of books, protocols, and doctors who can provide a starting point to your research. However, I will say that Lyme is difficult to overcome on your own. One of the best values of our approach toward testing is knowing what you have, measuring it, and retesting to make sure the protocol is working effectively. I can help adjust protocols and keep you on target. I’ve found that the grand majority of people can’t do it by themselves because it’s such a complex disease and is so often accompanied by co-infections.
While you may be able to follow a protocol you find online, if you aren’t testing and retesting, it’s hard to know if it’s working and if you need to troubleshoot and adjust your protocol.
Key takeaways: Living with Lyme
While living with Lyme is extremely difficult, having the right mindset can help you on your journey toward healing.
- Embrace gradual improvements and redefine your “normal” for this period of life.
- Adjust your expectations with flexibility and self‑compassion.
- Communicate often with your loved ones so they know how you’re doing from day to day.
- Participate when and where you can in life without causing too much burnout. Isolation only leads to worsening symptoms.
- Don’t hate your body. Think of how much it’s going through and how amazing and resilient it is as it works to fight off these intruders.
- Stay informed. There has been more emerging research on Lyme than ever before.
- Keep track of flares and symptoms. You may be able to start seeing certain patterns that can help you on your recovery journey.
- Evaluate your sleep, movement, stress, and nutrition to see if there are areas you can improve that may help alleviate certain symptoms.
- Explore mental‑health or peer support if you're feeling isolated.
- Work with an experienced Lyme practitioner who will test and retest you to make sure the protocol is working.
- Hold on to hope. There is always hope, even when you feel like you can’t get through another day.
- We have helped so many patients recover from Lyme, and you can get better, too!
You can get better from Lyme
Are you ready to take control of your health and look into whether Lyme disease and co-infections are the cause(s) of your health problems?
Reach out to our clinic and set up your free consultation with one of our team members who can go through your history, symptoms, and next steps with you. If you choose to test for tick-borne illnesses and other tests, you can figure out what you’re fighting. Discovering what your body is fighting is the first step in recovering. Request a free consultation here.
You can get better from Lyme and co-infections!
Check out our Lyme resources page and our blog for a wealth of information on Lyme and co-infections. The more you know, the more equipped you are to understand how this disease works.
For encouragement, check out our Lyme testimonial videos. They are just a handful of the thousands of Lyme and co-infection patients who have recovered after going through our protocols.
Watch the video and follow us to learn more
To watch the corresponding video to this article, click here.
To watch the video about how Lyme goes from acute to chronic, click here.
To watch the video on how diet impacts Lyme inflammation, click here.
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