Chronic Infections & MECFS… The Science and The Snake Oil Behind Chronic Lyme and EBV.
The basics
MECFS is a neuroimmunological disease most often triggered by an infection whose defining symptom is post-exertional malaise. MECFS is incurable and symptom management is the only evidence-based treatment.
Lyme disease is a serious and under-recognized infection that can cause severe disability and illness when untreated.
EBV is a common trigger of ME and autoimmune disease. CAEBV and EBV reactivation exist and can cause illness long after the initial infection. Other viruses also trigger ME and can reactivate.
There are no tests to validate whether Lyme disease has been cured.
Antibiotics and other treatments exist for Lyme disease. Antiviral treatments exist for viruses.
If a patient has an active infection treating this infection will make them feel better.
Many people use theories around chronic infections as a way to sell snake oil.
Many patients who no longer have active infections still have severe illnesses caused by MECFS.
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Mythbusting
The internet is full of practitioners who claim that chronic infections are the cause of MECFS and that all ME patients can be cured if only they take their magic pills.
But there are lots of patients who do not have chronic infections and still have MECFS, and lots of patients who have chronic infections but are not chronically ill.
Practitioners also claim that MECFS and Fibromyalgia are not real diagnoses but just symptom labels for chronic pain and chronic fatigue. This is false and perpetuates stigma and misinformation about ME and fibro. Some also claim that chronic infections are the cause of all autoimmune diseases, this is also false genetics cause some autoimmune diseases and we do not know what causes others.
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Functional Medicine & Root Cause Approaches
Functional medicine is an approach to medicine that aims to address the "root cause" of illnesses over managing symptoms and focus on the person rather than the disease.
Chronic infections are a very attractive target for functional doctors because they provide exactly what the patient is looking for: a root cause.
However, while an active infection may be the cause of some symptoms, many chronic illnesses have unknown causes not related to infections such as genetics. Furthermore when an infection triggers a feedback loop of dysfunction simply curing the infection will not necessarily stop these feedback loops.
Functional medicine doctors often offer a mix of conventional and alternative treatments. They are often more willing to write off-label scripts which can be essential for ME patients who want to try experimental treatments. They cannot cure MECFS but they may be better at picking out those who have been misdiagnosed and treating comorbidities as they tend to perform more testing and have more experience with chronic illness patients than GPs.
However, many functional doctors also prescribe disproven or unproven treatments, diets, and therapies. They also often charge high fees and push expensive supplements.
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Lyme Disease
Lyme disease is a tick bourne illness caused by the bacteria Borrelia burgdorferi. Around 80-90% of Lyme disease patients recover fully with a 2-4 week course of antibiotics but for some debilitating symptoms remain. Early treatment greatly improves outcomes. Lyme disease is broken into 3 stages: early localized, early disseminated and late disseminated.
A bullseye skin rash is a clear indicator of Lyme. However, a bullseye rash does not always appear in Lyme patients. Proper tick removal and testing are important. Not all patients with Lyme notice a tick bite.
Early localized Lyme symptoms include: flu-like illness, fatigue, stiff neck, headache, muscle soreness, joint pain, swollen lymph nodes and sore throat.
Early disseminated Lyme symptoms include: fever, chills, pain weakness or numbness in arms and legs, vision changes, heart problems, rash and facial paralysis.
Late disseminated Lyme symptoms include: severe fatigue, arthritis and joint swelling, severe headache and migraines, vertigo, dizziness, shortness of breath, sleep disturbances, insomnia, heart palpitations, brain fog, numbness, nerve pain, brain inflammation and more.
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Chronic Lyme Disease
The term chronic Lyme disease is confusing because it can refer to multiple things.
Late Lyme disease is when a patient was infected with Lyme disease and did not receive adequate treatment to clear the illness.
Post-treatment Lyme disease or PTLD is when a patient completes treatment for Lyme disease but does not recover, just like in MECFS or long covid. There are 2 million PTLD patients worldwide.
Many Lyme doctors prefer the term chronic Lyme to PTLD. Because there is no test to verify that Lyme has been cured there is no way to prove that a patient with PTLD does not still have an active infection. Thus it is unknown whether the Lyme bacteria is an ongoing cause of PTLD symptoms.
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Chronic EBV
Likewise, chronic EBV is often used to refer to two different sets of patients.
Chronic Active EBV (CAEBV) is a serious rare disease where a patient is unable to fight an EBV infection. It is a progressive illness and currently, the only effective treatment for CAEBV is hematopoietic stem cell therapy.
EBV reactivation is when EBV becomes active in a patient who previously recovered. Often times this does not cause symptoms but in some patients, it may cause symptoms similar to the initial infection. Blood tests for reactivation are not exact so the term chronic EBV may be used by people with various experiences with viral reactivation or post-viral illness.
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Trigger or Cause?
EBV is associated with many autoimmune diseases. A recent study made headlines when it found that people with EBV were 32x as likely to develop MS. Likewise, Lyme disease patients often go on to be diagnosed with autoimmune diseases.
However, we do not know why these connections exist. There are two conflicting theories:
1.) Infections trigger autoimmune processes in the body
2.) Infections are not fully cleared from the body causing autoimmune disease
While there is lot of evidence supporting infections as a trigger for autoimmune disease, the theory that infections are not fully cleared is largely supported by the innability to prove that infections are cured. The absence of evidence is not evidence.
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Testing & Treating
When a patient has an active infection it is important that this be treated. However, it can sometimes be difficult to tell whether a patient's symptoms are caused by an active infection, especially because many of the markers for infection are also activated by autoimmune diseases.
Standard testing rarely covers comprehensive infectious disease screening and standard testing for Lyme often produces false negatives. In response, some doctors will send patients to specialized labs with highly sensitive tests. These tests almost always give positive results but may give false positives. Patient history and verification of testing by multiple labs can help patients identify false positives and false negatives.
If a patient has an active infection causing their symptoms then they will usually see improvement from treating that infection. The patients were often told by doctors that they were incurable prior to discovering the infection which rightfully makes them passionate advocates for testing.
Treatment will not necessarily fix other autoimmune processes that have been triggered in the body, and treatment that boosts the immune system more generally may increase autoimmune symptoms. Additionally medications like antibiotics can have side effects that make patients feel worse.
Because there is no specific length of treatment guaranteed to cure infection and no way to test if an infection has been cured this means that doctors who claim to cure chronic illness by treating infection can always say that it just hasn't been long enough. This can trap some patients in an endless cycle of ineffective treatment until they go bankrupt or give up.
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What to do?
As with all treatments for ME, treatments based on the chronic infection theory are unproven and not based in evidence. There are only a few categories of people for whom treatment of chronic infections is evidence-based:
-CAEBV as verified by repeated blood tests can be treated with stem cell therapy
-Late Disseminated Lyme can be treated with antibiotics
-Reactivated herpesviruses as verified by high IgG (5x standard) can be treated with Valtrex
In CAEBV and late Lyme in particular, therapeutic intervention can be lifesaving and is incredibly important. For this reason, Lyme disease and EBV testing is very important in ME patients, especially severe ME. More generally, patients who have reason to suspect any treatable infections should self-advocate for testing.
However, patients must be cautious about latching onto minor test results as the cause of their illness. Some test results that do not indicate a need for treatment:
-Normal range IgG levels showing past infections
-Lyme disease testing that is borderline or minorly positive from a highly sensitive lab in absence of case history consistent with Lyme disease
I encourage all patients with ME to do as much research as possible on experimental treatments before committing to them. This extends to infection-based treatments. Beware of people who claim to cure MECFS or know the one true cause of ME, and know that even if you have an active infection treatment may not cure you.
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MECFS is a real verifiable chronic illness. It is not just a "cover-up" for chronic infection or chronic Lyme. But that doesn't mean that chronic infections aren't real.
Lyme Disease is a serious illness caused by bacteria. Traditionally Lyme presents with a bullseye rash and resolves following a short course of antibiotics but this is not always the case when symptoms remain PTLD or Post Treatment Lyme becomes a post-infection Illness just like long Covid.
When Lyme infection is not diagnosed, it can turn into late Stage Lyme or neurologicalLy ME and be incredibly debilitating or deadly.
The confusion is that chronic Lyme can refer to either PTLD or late-stage Lyme Disease. We do not yet know whether the Lyme bacteria plays any role in PTLD.
Likewise, chronic EBV can refer to a rare often deadly disease CAEBV, to a patient with EBV ViralReactivation or to patients with Myalgic Encephalomyelitis aka ME / CFS triggered by Epstein-Barr virus. long EBV is real. Just like long covid.
I have nothing against identifying and treating active infectious diseases. Indeed, thorough screening for infection should be part of every ME patient's diagnostic work-up despite the fact it is often neglected, and I have strong support for people who have active infections getting treated for those infections.
But I do have an issue with Snake Oil salesmen claiming that chronic infections are the cause of all MECFS and that they can cure us with treatments unproven or proven ineffective in ME. I have an issue with people who claim that autoimmune Disease is not real and who claim to cure incurable illnesses.
Chronically Ill patients with chronic Lyme or EBV are not lying. I know how debilitating these diseases are and how much we want to find a cause. But I also know that doesn't mean we do know the root cause. We need to research MECFS, PTLD, EBV, and long covid. We need to research post-infection illness. Because I believe Patients AND I believe Science and I know that when we pit one against the other we harm everyone.
To learn more about post-infection illness and donate to support research please visit The Open Medicine Foundation @openmedf.
