Chronic Lyme Symptoms Explained

According to data released by the CDC, an average of 476,000 are diagnosed with Lyme every year. Among those, around 10% of those infected develop prolonged symptoms, triggering chronic Lyme.

Understanding the symptoms is essential for patients to get the correct treatment and ensure long-term wellness. This article will address chronic Lyme disease and its symptoms, making the condition easier to diagnose. 

What Is Chronic Lyme Disease?

Chronic Lyme disease is a term that doctors and patients use to describe symptoms that persist after receiving Lyme treatment. These symptoms are nonspecific and can include muscle pain, fatigue, and cognitive dysfunctions.

PTLDS vs. Chronic Lyme — Is There a Difference?

The difference between PTLSD and chronic Lyme lies in its medical acceptance, terminology, and definition. 

The CDC defines Post-Treatment Lyme Disease Syndrome (PTLSD) as a post-infection syndrome, but not necessarily an active infection. 

The CDC believes that symptoms linger due to factors such as nerve damage, disruptions to the immune system, and lingering inflammation. Studies led by Kate E. Wester on the mechanisms of post-treatment Lyme disease syndrome confirm this. 

Some prefer the use of chronic Lyme disease, which is the broader term for patients. Conventional medicine avoids using this term, which potentially leads to improper treatment. This suggests long-term symptoms related to a recurring or ongoing infection.

More often than not, chronic Lyme is also associated with immune dysfunction, co-infections, and stealth pathogens. Patients have symptoms that are not necessarily part of the narrow PTLSD panel.

Why the Definition Matters

The definition matters because it affects how medical providers label the diseases. If a patient says they believe they have chronic Lyme, doctors reject this type of diagnosis. They may say it’s psychological or unrelated, which means the patients receive delayed care.

That said, patients with diagnosed PTLSD could benefit from treatment eligibility for their lingering symptoms. Patient perception changes because now they get validation for their symptoms. At the same time, patients with “chronic Lyme” have a difficult time getting help. 

These terminology gaps are the reason why Lyme disease is often misunderstood. Reports by LymeDisease.org on Misdiagnosis of Lyme disease show that roughly 36% of chronic Lyme patients get the wrong label. They don’t fit the PTLSD guidelines, which means they don’t get validation. This is extremely frustrating for lyme patients. 

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Common Symptoms of Chronic Lyme

Common symptoms of chronic Lyme are neurological, cognitive, musculoskeletal, and systemic. Recognizing and recording these issues is essential for receiving the correct diagnosis.

Neurological and Cognitive Symptoms

More often than not, chronic Lyme affects the brain and the nervous system. Patients frequently experience symptoms such as:

• Brain fog
• Word-finding difficulty
• Memory loss
• Light sensitivity
• Mood changes (e.g., anxiety and depression)
• Headaches and migraines 

Cognitive dysfunction is often connected to neuroborreliosis. Here, the bacteria invade the nervous system, which disrupts proper neurological functions. When this happens, the patients forget things more frequently or struggle to concentrate. 

Sadly, these symptoms are often dismissed as burnout, stress, or merely getting old. This is especially the case when tests come out negative, which happens around 52% of the time with ELISA testing. This leads to misdiagnosis, adding even more trauma to the original infection.

Musculoskeletal and Systemic Symptoms

Chronic Lyme often brings musculoskeletal and systemic symptoms such as ongoing pain or fatigue. Symptoms differ, but most patients have a general sensation of feeling unwell. 

While symptoms don’t always have a predictable pattern, the majority report the following: 

• Joint pain in the hips, knees, and hands
• Fatigue that doesn’t go away with rest
• Pain that “migrates” across multiple areas of the body
• Muscle weakness and aches
• Headaches (mostly manifesting themselves as migraines)
• Ups and downs- one day feeling mostly well and the next bed-bound

These symptoms usually suggest that you have systemic inflammation going on in the body. Their intensity differs based on whether you’re dealing with early vs. late Lyme disease. 

Early Lyme is more acute and mimics flu-like symptoms, whereas late Lyme comes in waves. The random symptom flaring is what makes it so difficult to diagnose. 

Why Chronic Symptoms Persist After Treatment

Chronic symptoms persist after treatment due to immune system dysregulation, lingering infections, and more. Patients need to understand the reason so they receive tailored treatment.

Immune System Dysregulation

Immune system dysregulations either fail to expel the bacteria from the body or act as if it is still there. 

Here are two things that can happen:

• Immune Overreaction: An infection starts a prolonged immune response that keeps attacking even if the bacteria are technically out. The immune system overreacts and keeps making more cytokines, which are responsible for inflammation. 
• Bacterial Persistence: The Borrelia bacteria form a protective biofilm or hide in tissue. This lets them escape the immune system while delivering a low-level attack.

Some chronic Lyme patients also present CD57 suppression. This biomarker shows that the immune system is worn down and incapable of responding to the infection. 

Some doctors use these markers to track the disease, but it’s not broadly accepted. However, functional medicine uses this data to keep an eye on disease progression. 

In our experience…

When patients show up with mystery symptoms and negative ELISA or Western Blot’s, I often see a low CD57 when I suspect lyme disease. I have had many of these patients order specialty lyme testing and the ones with the low CD57 did have lyme disease. I consider this lab a puzzle piece, when conventional lyme testing is negative. 

Lingering Infection or Something Else?

Lyme patients may have lingering infections due to Borrelia burgdorferi’s ability to go into “stealth mode.” Here, the bacteria transform into round bodies or cysts that are harder to detect. These may go dormant and only resurface when the body is going through stress.

Aside from immune evasion, they are also resistant to antibiotics. This happens because Borrelia is known to form biofilms that protect it. This makes it almost impossible to get rid of the Lyme-causing bacteria with your regular dose of doxycycline. 

In some cases, Borrelia burgdorferi enters a slow-replicating phase. Most antibiotics go after bacteria that replicate actively, so this complicates things even further. This way, the bacteria hide from destruction, succeeding in their immune evasion. 

The uncertainty of what’s happening to the bacteria or where they’re hiding creates a lot of controversy. It’s unlikely that the PTLSD post-treatment Lyme debate will end anytime soon. 

Diagnostic Challenges That Delay Proper Care

False negatives and doctor dismissal delay proper care. This prevents patients from getting the correct treatment on time, leading to further complications.

Testing Doesn’t Always Tell the Whole Story

Testing can give false results as a result of poor timing and immune system issues. This happens with both ELISA and Western blot testing. 

According to data from the Global Lyme Alliance, more than 50% of antibody tests are false negatives, leading to poor diagnosis. 

Most doctors ignore what the patient is saying when the test misses its diagnosis. However, there are some very good reasons why this happens. 

• The body may not have produced enough antibodies yet because it’s too early. 
• The immune system is compromised, preventing it from creating the proper number of antibodies. 
• The patients lack the classic symptoms of Lyme disease (e.g., the bullseye rash)
• The medical guidelines are outdated and only acknowledge PTLSD.

Both ELISA and Western blot tests look for an immune response, not the infecting bacteria. This means that if the bacteria are hiding in the tissue or go dormant, tests miss the infection.

This is why symptoms guide diagnosis more than labs do. Still, this isn’t standard practice in conventional medicine. This frequently leaves patients undiagnosed and without treatment, causing them to feel sicker by the day. 

When Doctors Don’t Believe You

Chronic Lyme is one of the few conditions that is easily dismissed by medical providers. Studies by Ann S O’Malley on Patient Dismissal by Primary Care Practices show that only 10% of practices don’t dismiss their patients at all. 

Chronic Lyme disease has many symptoms that overlap with fibromyalgia, depression, or chronic fatigue syndrome. A negative test taken at the wrong time or a superficial consultation also leads to a dismissal. If patients advocate for their rights, they have to pay for the treatment from their own pockets. 

These Lyme misdiagnosis stories are frequent, and treatment delays lead to chronic Lyme. Plus, this type of medical gaslighting often causes patients to doubt their own pain. This leaves an emotional wound, with the individuals feeling helpless and anxious.

This is why so many patients turn toward naturopathic care or Lyme specialists. Sometimes, this is the only way for them to get the proper validation and treatment. 

Naturopathic Approaches to Chronic Lyme

According to data from the Johns Hopkins Lyme Disease Research Center, an average of 90% of early Lyme patients recover after a course of antibiotics. That said, about 10% don’t recover because they need extra support for the immune system. This is where naturopathic care comes in. 

Beyond Antibiotics

Patients who aren’t responding to antibiotics should consider a holistic treatment approach. This includes herbal microbials, detox support, and immune-balancing therapy. Or, some patients come to us and want to only utilize herbals instead of antibiotic therapy. 

Some common herbal antimicrobials include:

• Japanese Knotweed: Anti-microbial in nature. Good for improving blood flow and reducing inflammation.
• Cat’s Claw: Anti-microbial in nature. Modulates the activity of the immune system and targets pathogens in “stealth mode.” 
• Artemisinin: Anti-microbial in nature. Effective for co-infections with Babesia and helpful against biofilms.
• Andrographis: Broad-spectrum that targets various tick-borne pathogens and supports immune function. 

Keep in mind that these natural remedies for Lyme are either used in combination with antibiotics, or alone. It depends on the patient’s case. For ie. if they have been on antibiotics already, if they have been on them long term, if they don’t tolerate them, or choose to only want to utilize herbals. Also, if the lyme case is acute or chronic. 

Conventional doctors only address the symptoms with antibiotics. On the other hand, naturopaths look at the entire clinical picture. This prevents the recurrence of chronic Lyme in the future. 

Treating the Whole Person

A healthy immune system is essential for approaching and treating chronic Lyme. Integrative Lyme protocols include systems such as:

• Addressing sleep disruptions with natural herbs and sleep habit changes
• Supporting mental health through counseling and adaptogens
• Promoting gut healing by using probiotics and prebiotics
• Proper diet to stabilize blood sugar and reduce inflammation
• Managing stress through lifestyle changes and mindfulness

These protocols support the body’s natural ability to heal. This way, patients recover fully, without any lingering symptoms.

Real Patient Experiences — What the Medical System Overlooks

The medical system overlooks the fact that chronic Lyme disease doesn’t manifest the same in every patient. This is why so many fall through the cracks and don’t get the appropriate treatment. 

Stories That Don’t Fit the Textbook

Very often, chronic Lyme patients don’t align with the standard medical narrative. For example, a patient may deal with fatigue, brain fog, and joint pain after being bitten by a tick. However, upon taking the ELISA test, it was negative. 

Doctors would diagnose this person with chronic fatigue syndrome, and their condition would gradually decline.

Sometimes, the patients report symptoms. However, in the absence of a positive test, Lyme disease becomes chronic. The system fails to recognize the pathogen inside it, which makes naturopathic protocols essential for support.

FAQs — Chronic Lyme, PTLDS, and What to Expect

1.How Long Can Symptoms Last After Lyme?

Symptoms can last for months, perhaps even years, after receiving Lyme treatment. This depends on various factors, such as how early you got your treatment and whether or not you had co-infections. Your immune functions also determine how long the symptoms last. 

2.Is Chronic Lyme Real or Just PTLDS?

The answer depends on who you ask. Conventional medicine says that it’s not just chronic Lyme. However, many doctors and patients believe that chronic Lyme involves an active infection. It’s not just lingering symptoms after getting the treatment.

3.Can You Treat Chronic Lyme Without Antibiotics?

If antibiotics fail, you can treat chronic Lyme without them. The immune system was made to ward off infections, after all. Immune modulation treatments, herbal treatments, and system detox are good ways to help Lyme disease exit the body. In our experience, we have great success treating chronic lyme with immune support, detox, bio-therapeutic drainage, nervous system/adrenal support and anti-microbial herbs. We do so in a strategic manner to support the patient’s body through the entire process. 

4.Why Don’t Most Doctors Recognize Chronic Lyme?

Medicine is evolving, but Lyme disease is still misunderstood. Standard tests often fail, and doctors have to rely on rigid guidelines if they want to offer a diagnosis. These guidelines don’t always cover what the patients are going through, leaving many of the atypical cases undiagnosed.