Post Treatment Lyme Disease Syndrome

Lyme disease affects 300,000 people a year in the US, mostly in the Northeast and upper Midwest but found in almost all states. It is also a disease that is controversial, causing heated online arguments, misunderstood patients, and sometimes wacky cures.[ref] Interestingly, genetic variants impact both how Lyme disease affects you and how well antibiotics work for you.

Background on Lyme Disease:

In North America, Lyme disease is caused by Borrelia burgdorferi, a bacteria carried by black-legged (deer) ticks. Symptoms of Lyme include:
  • fever
  • headache
  • fatigue
  • skin rash - erythema migrans
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 has spread across the country.[ref] In Europe, Lyme is also present and sometimes called Borreliosis. Cases can involve genospecies of Borrelia including B. afzeliiB. garinii and B. valaisiana.[ref][ref]

Can Lyme disease completely be cured?

Several weeks of treatment with antibiotics will cure Lyme disease for the majority of people.[ref] Unfortunately, not everyone reacts the same way to Lyme disease. Genetic variants can cause some people's immune system to act differently towards the Borrelia species, and other genetic variants can influence how well antibiotics work within your cells.

What is chronic Lyme disease?

There seems to be a lot of swirl and controversy regarding the diagnosis of chronic Lyme on the internet (well, on "the Facebook"). Some people use the term chronic Lyme to indicate still having symptoms such as fatigue and brain fog after having gone through antibiotic treatment. The powers that be now call that "Post Treatment Lyme Disease Syndrome (PTLDS)". There are quite a few studies on PTLDS, and that is mainly what will be covered here in the genetics part of this article. The term chronic Lyme is also often applied for people who don't feel well (fatigue, brain fog) but also haven't ever had blood tests that show up positive for Borrelia burgdorferi. This usage and lots of alternative medicine diagnoses have caused a big backlash from mainstream medical people. It seems to be a fairly polarizing topic that leaves the patients getting the short end of the stick. The term now used by researchers and doctors is Post Treatment Lyme Disease Syndrome.

What is Post Treatment Lyme Disease Syndrome (PTLDS)?

PTLDS is much easier to define than chronic Lyme. After receiving standard treatment for Lyme (several weeks of antibiotics), some people still continue to have 'clinically relevant' pain, fatigue, sleep disturbance, depression, and lower quality of life. Usually, the blood tests for these people are normal. This has been well documented in several studies.[ref] PTLDS 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] What causes PTLDS? There are several possibilities.
  • Bacteria (B.burgdorferi) that remain even after aggressive antibiotics[ref]
  • The inability of some antibiotics to kill Borrelia burgdorferi in biofilm-like structures.[ref]
  • Inflammatory Borrelia burgdorferi components remain after the bacteria are killed.[ref]
The question then becomes "why do 10 -20% of people treated for Lyme not recover completely"? With 300,000 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] Genetics can play a role in how well treatments for Lyme disease work.

Genetic Variants and Chronic Lyme:

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