Lyme disease affects ~476,000 people a year in the US. While initially only in the Northeast and upper Midwest, ticks carrying Lyme disease are now found in almost all states.[ref][ref]
Genetic variants are part of why Lyme disease affects people differently. Genes also play a role in how well antibiotics work to cure Lyme. In this article, I’ll explain how genes interact with chronic Lyme and possible solutions.
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In North America, Lyme disease is caused by Borrelia burgdorferi, a bacteria carried by black-legged (deer) ticks.
The CDC’s data on Lyme disease dates back to 1991, but reports of Lyme disease go back to the mid-1970s. The number of cases has grown steadily since the early ’90s, and the areas where the disease is found have spread across the country.[ref]
In Europe, Lyme is also present and sometimes called Borreliosis. Cases can involve genospecies of Borrelia, including B. afzelii, B. garinii, and B. valaisiana.[ref][ref]
The Borrelia species are a type of bacteria known as a spirochete. Our immune system has difficulty recognizing this bacterial spirochete because the surface proteins continually change, which keeps the pathogen one step ahead of the acquired immune response.[ref]
Several weeks of antibiotic treatment will cure Lyme disease for most people.[ref]
Unfortunately, not everyone reacts the same way to Lyme disease. Genetic variants can cause some people’s immune systems to act differently towards the Borrelia species, and other genetic variants can influence how well antibiotics work within your cells.
People use the term chronic Lyme to indicate they still have symptoms such as fatigue and brain fog after undergoing antibiotic treatment for Lyme disease. This can sometimes last for years, significantly impacting quality of life.
There seems to be a lot of swirling controversy regarding the diagnosis of chronic Lyme because it was initially dismissed by some physicians who called it psychosomatic. Even recent articles, such as this one, use terminology such as “supposed symptoms” and claim that the “medical establishment maintains that there is no such thing as chronic Lyme”.
The term chronic Lyme is also often applied to people who don’t feel well (fatigue, brain fog) but also haven’t ever had blood tests that show up positive for Borrelia burgdorferi. The vague usage and alternative medical diagnoses have caused a big backlash from mainstream medical people. Chronic Lyme as a polarizing topic leaves patients getting the short end of the stick.
Encouragingly, research is now catching up on chronic Lyme symptoms and treatments.
Researchers and doctors now use the term Post Treatment Lyme Disease (PTLD). There are now hundreds of solid studies on PTLD syndrome showing the physiological and cellular changes in people with PTLD.
PTLD syndrome is much easier to define than chronic Lyme. After receiving standard treatment for Lyme (several weeks of antibiotics), some people continue to have ‘clinically relevant’ pain, fatigue, sleep disturbance, depression, and lower quality of life. Often, blood tests for these patients are normal. This has been well documented in several studies.[ref]
PTLD with significant symptoms affects between 10 and 20% of people treated for Lyme, according to official estimates. Other studies show that mild symptoms, whether ‘clinically relevant’ or not, remain for half or more of patients after treatment.[ref][ref]
While these symptoms can also be due to other underlying causes, a recent study found that people with a history of Lyme disease were five times more likely to meet the criteria for PTLD than those with no prior Lyme diagnosis.[ref]
The results of a recent study showed that the long-term cognitive problems in PTLD continued without improvement for 12+ months after completing treatment. More encouragingly, the fatigue scores did improve a little over the course of a year.[ref]
What causes PTLD? There are several possibilities.
The question then becomes: Why do 10 -20% of people treated for Lyme not recover completely?
With over 400,000 Lyme cases per year just in the US, that could leave 60,000 people per year who deal with chronic, long-lasting symptoms. One study estimates that by 2020 the cumulative number of people dealing with PTLD could be as high as 1.9 million.[ref]
One study found that patients with the bull’s-eye rash (erythema migrans) were 3-times less likely to end up with chronic Lyme when compared to patients with disseminated Lyme (later symptoms).[ref] Perhaps a stronger initial immune reaction determines who gets PTLD?
A recent study showed that non-viable components of B. burgdorferi stimulated a higher immune response in brain cells than the total bacteria.[ref] Components of the bacteria wouldn’t be affected by antibiotics, which may explain why taking more rounds of antibiotics doesn’t knock out the infection.
Genetics can play a role in how well treatments for Lyme disease work and help us understand what is happening. A 2019 study found that genetically based hyperinflammation may play a role. The chronic Lyme patients had imbalanced IL-6 along with elevated IL-1β and IL-8 (inflammatory cytokines).[ref]
Proteomics studies look at the differences in the blood proteins of people with chronic Lyme compared with people who had Lyme and recovered and those who never had Lyme. The research shows a clear difference in people with PTLD.
A new study found that 35 gene biomarkers could be used to identify chronic Lyme. Several immune system pathways are involved. Interestingly, a couple of the genes are also related to epilepsy (CACNB4, ALDH7A1, SCN3A) which could be a molecular reason for the neurological symptoms of PTLD.[ref]
If you find a tick and have symptoms of Lyme, the earlier you get treated, the better the odds are of a complete recovery.[ref][ref]
There are several ongoing clinical trials for different protocols to determine the best treatments for Lyme, so hopefully, more answers will be available soon.[ref]
COMT – A gene that affects your neurotransmitter levels
Having trouble with supplements containing methyl groups? Wondering why your neurotransmitters are out of balance? It could be due to your COMT genetic variants. This important enzyme is tasked with breaking down neurotransmitters, such as dopamine.
MTHFR: How to check your data
It is easy to check your genetic results on 23andMe or AncestryDNA for the two main MTHFR variants known as C677T and A1298C.
Inflammation: Causes and Natural Solutions
Take a deep dive into the causes of chronic inflammation and learn how to target specific inflammatory pathways to reverse or prevent chronic disease.
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