Lyme disease has spread rapidly, plaguing the lives of thousands upon thousands of people. Because May is Lyme Disease Awareness Month, I (Dr. Warren) especially want to highlight real Lyme disease stories of frustration and hope of some of our patients. May their stories of healing provide hope that you too can overcome Lyme disease and co-infections!
Most of our Lyme patients had fallen through the cracks of the medical system before they stepped into our clinic. They faced frustrating experiences as they sought help from doctors who were still using outdated testing and treatment methods or who refused to test for Lyme at all.
If you’re not receiving the help and attention you need from medical professionals, your hope doesn’t have to end there. There are Lyme-literate doctors and more thorough testing is available.
Note: Names and some family details have been changed for privacy purposes.
Real patient story: Chrissy
How she knew something was wrong
In this first installment of highlighting real Lyme patient stories, I want to bring up the experiences of Chrissy, a 35-year-old stay-at-home mom who was fighting several symptoms, the most severe being fatigue.
Before Chrissy came to our clinic, she felt like her life had been ripped out from under her.
In the spring of 2021, fatigue began to settle in. The exhaustion she experienced was so severe that some days she couldn’t get out of bed to take care of her children, forcing her husband to leave work to help. Other family members tried to help by taking care of the kids as well.
After her husband had to rush home from work to take care of their children for the fourth time, they knew they needed to seek medical attention.
In between these severe episodes of extreme fatigue, her energy levels never returned to normal. She felt like she could no longer make plans and became unreliable because she couldn’t predict how she would feel from one day to the next.
- Fatigue: 8/10 to 10/10
- In between her most severe bouts of exhaustion, her energy levels never returned to normal. The fatigue started in the spring of 2021.
- Headaches: 5/10
- These came and went with the fatigue and weren’t as intense of a level as the fatigue, but she was experiencing many more headaches than she ever had before.
- Swollen lymph nodes: 3/10
- Her neck, body and feet were regularly swelling. Some days she was puffy and swollen.
- Muscle twitching: 2/10
- Chrissy would have random twitching in her arms, calves, and even her stomach. While it didn’t bother her, it was strange and never used to happen.
In between experiencing the most severe symptoms, she was able to somewhat function, but Chrissy still wasn’t reaching her normal energy levels. It was a slow, downward trend, which made it hard for her family and her to live life normally and make plans.
This happens to many Lyme and co. patients. They become unreliable because of how greatly their symptom intensity can fluctuate. They have a hard time saying yes to things because they don’t know how they’ll feel from one day to the next.
Unreliability was unusual for Chrissy. She hadn’t ever been like that before, which confused everyone in her family.
A trip to the ER and false reassurance
The triggering event for them was in November of 2021. Due to her heart beating intensely and her chest feeling abnormal, they went to the ER. They did CT scans of her upper and lower body. They checked her thyroid and iron levels, did blood panels, an echo, and an ultrasound, yet nothing showed up as abnormal. She was sent to follow-up doctors, but no one could find anything.
This is incredibly frustrating for patients when they’re experiencing scary symptoms, yet the doctors say everything is fine. “Everything is fine” just means they can’t find what’s causing the symptoms.
Could it be Lyme?
After seeing multiple doctors, Chrissy started doing her own research and began talking with friends about her symptoms. She then asked for a Lyme test because doctors couldn’t find anything wrong with her and was met with opposition.
Her doctor didn’t want to do a Lyme test because she didn’t have a bull’s-eye rash and she didn’t recall getting bitten by a tick. He told her, “If there’s no rash, it can’t be Lyme.”
However, at least half of people who contract Lyme disease don’t develop a rash. That myth is repeated all too often by those in the medical profession who then spread that misinformation to their patients.
She eventually convinced her doctor to do a Lyme test. Unfortunately, the tick test they ran was severely outdated and inaccurate.
The standard test doctors still run today is from the early ‘90s and has two tiers to it. In Chrissy’s case (as is the case for many patients), the first part came back positive, but the second part came back negative. Because of this, the doctor said, “It’s not Lyme.”
Common Lyme symptoms
Lyme can be found almost everywhere now, especially if you live in an area that has a high deer population because deer spread ticks. If you live in places like Minnesota, Wisconsin, and many places on the East Coast, it’s especially likely you’ll come into contact with a tick.
The following symptoms are the most common with Lyme. But there are many other symptoms that can occur with Lyme and co-infections as well.
Most common Lyme symptoms:
- Joint/muscle pain
- Cardiac abnormalities
- Neurological abnormalities
Cardiac symptoms from Lyme often send people to the ER. However, tests almost always show up as normal, meaning the ER can’t find the problem, even though you’re getting what feels like heart-related symptoms.
Neurological abnormalities often cause anxiety, depression, insomnia, neuropathies, vestibular problems, facial palsy, and other hard-to-explain neurological symptoms.
If you’re experiencing any of these symptoms and don’t really know what’s causing them, that can be a sure sign to check for tick-borne illnesses as the cause.
Patients need thorough, accurate Lyme and co-infection testing when they have unexplained symptoms and symptoms that aren’t going away with other treatments and protocols.
Doctors need to test more than just Borrelia burgdorferi
Doctors also need to realize that more species than just Borrelia burgdorferi can cause Lyme disease. There are many different species and strains of Borrelia that must be tested for as well.
On the standard test, when you have one tier positive and one negative for Lyme disease, doctors often dismiss it and say Lyme isn’t a problem.
However, this just indicates that better testing is needed. Oftentimes, this means the patient is suffering from a different species of Lyme disease other than the typical B. burgdorferi. You must check for multiple bacterial species and strains, such as Borrelia mayonii, Borrelia japonica, Borrelia andersonii, Borrelia lusitaniae, Borrelia bissettii, Borrelia spielmanii, Borrelia californiensis, Borrelia turicatae, etc.
Testing Lyme co-infections can bring clarification
Along with making sure you get tested for multiple Borrelia (Lyme) species, you also need to get tested for Lyme co-infections. Just as ticks can carry more than just one strain of Lyme disease, they can carry numerous other infections.
In a tickborne illness panel, test for:
- Multiple Borrelia species!
- Multiple co-infections:
- Powassan Virus
Chrissy’s tick-borne illness panel results
Through thorough, more accurate testing, we found that Chrissy was dealing with multiple tick-borne illnesses. This is an example of her test results from the tick-borne illness panel we ran.
You can see that she is partially positive under Borrelia burgdorferi strains. This is when you have doctors telling you a few bands are positive, but there aren’t enough positive bands for it to be considered an active infection. You’ll have many Lyme doctors arguing about test results like these.
In Chrissy’s case, she was positive for Lyme, it just wasn’t positive for the burgdorferi species.
Borrelia (Lyme disease)
Chrissy had a different species of Borrelia called Borrelia turicatae, which is why the outdated Lyme test only showed up as partially positive. The standard Lyme test will often look partially positive when you have a different species or strain besides burgdorferi.
Along with having Borrelia turicatae, she also was positive for various strains of Babesia microti, a parasitic Lyme co-infection. Research shows that Lyme becomes more aggressive when Babesia is paired with it. It particularly gets more aggressive with its effects on the nervous system and can cause major neurological problems. This pairing explained her crushing fatigue.
Chrissy also had a species of Bartonella show up positive. Once again, there are several different species of Bartonella, not just the classic Bartonella henselae. Instead of henselae, she had Bartonella elizabethae. Other species include: Bartonella quintana (trench fever), Bartonella bacilliformis, Bartonella alsatica, Bartonella clarridgeiae, Bartonella grahamii, Bartonella mayotimonensis, etc.
She was also positive for another one of the most common co-infections called Rickettsia. The species she had was Rickettsia typhi (typhus fever), of which she was positive for two strains. Other Rickettsial diseases include Rickettsia rickettsii (Rocky Mountain spotted fever), Rickettsia prowazekii (Epidemic typhus), Rickettsia conorii (boutonneuse fever, Mediterranean spotted fever, Israeli tick typhus, etc.), Rickettsia felis (flea-borne spotted fever), and Rickettsia honei (Flinders Island spotted fever).
Lyme and co-infections
Not only did Chrissy have a species of Lyme, she also had three other co-infections going on that can cause insufferable symptoms.
This is a perfect example of why you need to get tested for multiple species of Lyme and co-infections—a full tick-borne illness panel. Better testing gave us clarity on what was happening inside Chrissy’s body, and if you are suffering from tick-borne illnesses, better testing will give you more insight as well.
Most medical professionals give up on finding root causes much too quickly. If you miss discovering the root cause, you won’t find a solution that works (or that works for very long). When you know the root cause(s), you can find better solutions.
Health and life reclaimed: You can heal from Lyme disease too
When Chrissy’s health was suffering, it made life miserable. It also made it impossible for her to lead a normal life and affected everyone in her family. Bad testing led to her falling through the cracks of the medical system for far too long.
A few weeks ago, I had the joy of hearing how well Chrissy has been doing. She has been symptom-free for 8 months, and it’s completely changed her life. She can now be the wife, mother, and friend she was before her health was taken from her, and she can now enjoy the joyous, everyday moments of life once again.
Chrissy responded fairly quickly to the treatment plan. Keep in mind that when patients have been suffering from Lyme and/or co. for years, it can take longer to heal, but it’s totally possible to recover.
In future videos and posts, we’ll go over the particulars of how Chrissy was able to partner with us to overcome the Lyme disease and co-infections that were plaguing her body and reclaim her health.
- Don’t ignore symptoms, even if your doctor says “Everything is fine.”
- Instead of covering up symptoms, you have to find the cause. This can be easier said than done because of how difficult it can be to convince doctors to test properly for Lyme and co-infections. However, if you can find the cause, you can come up with possible solutions to help you heal.
- If you live in a tick-endemic area, and even if you don’t, if you start having unexplainable symptoms, accurate, thorough testing is a must.
- Over the years, I have had the pleasure of seeing our patients reclaim their health and overcome Lyme disease and co-infections. You can heal from Lyme disease too!
By Dr. Kyle Warren
Edited by Meghan Feir Walker