This is my best attempt to shed some light on some of the mystery and confusion that surrounds Chronic Lyme. While this is my best understanding of some pretty difficult concepts, I am not a doctor. So if you’re looking for more technical explanations or trying to diagnose yourself or someone else, please refer to the sources at the bottom for more information.
What is it?
This is the million dollar question. The CDC refers to any symptoms appearing after the prescribed 2-4 week treatment for lyme as Post-Treatment Lyme Disease Syndrome. They do not offer any treatment recommendations for this condition, but instead posit that symptoms should decline over time.
A large number of doctors and researchers have challenged this over the years, and have instead started calling the long-term effects of Lyme, Chronic Lyme Disease. It took me a while to find a concise definition, but I finally did in the treatment guidelines of the International Lyme and Associated Diseases Society (ILADS).
ILADS, and specifically Dr. Joseph J. Burrascano Jr. who is a Lyme expert, say that to have Chronic Lyme, the following three criteria must be present.
1. Illness present for at least one year (this is approximately when immune breakdown attains clinically significant levels).
2. Have persistent major neurologic involvement (such as encephalitis/encephalopathy, meningitis, etc.) or active arthritic manifestations (active synovitis).
3. Still have active infection with B. burgdorferi (Bb), regardless of prior antibiotic therapy (if any).
(Source: Advanced Topics in Lyme Disease, p. 3 http://www.ilads.org/lyme/B_guidelines_12_17_08.pdf)
Is it really chronic?
The label of chronic can be confusing, because according to most doctors, this condition can be cured or at least put into remission for the vast majority of patients. I think in this case the word chronic serves to distinguish the disease from an acute condition. For most patients, chronic lyme takes months to years to treat.
How is it diagnosed?
There are many different tests, but I was given the Western Blot test, and think it is a pretty standard test that most functional medicine and lyme literate doctors give. The ELISA which is the standard lyme test you would get in a regular doctor’s office, is not specific enough or sensitive enough to catch most incidences of lyme. In fact it misses about 30% of lyme.
Even on the Western Blot test, positive results are hard to come by. The CDC defines a positive result as five or more bands (antibodies specific to lyme), showing up in the blood. Most functional medicine doctors and LLMDs are more likely to count one to two bands as a positive result, as you should never really be making antibodies to borrelia burgdorferi without having first been infected. Couple this with the fact that lyme is an expert at evading the immune system, and anything showing up on a test at all is kind of a miracle.
Of course doctors don’t just look at the test results alone, but at the clinical presentation and symptoms of the patient, and these two parts together make the diagnosis.
How is it treated?
There is no one gold-standard treatment for chronic lyme, instead the treatments are about as varied as the prescribers. Everything from antibiotics, to herbs, to diet, to detoxification, to electromagnetic waves, to intravenous silver… you name it, someone is probably trying it. Most physicians recommend a combination of a few different things. The most common protocol that I have heard of is antibiotics with herbs, and a strict adherence to a clean diet to support the immune system. Usually a protocol is followed until a patient enjoys at least a few months of remission, suggesting that the bacteria in all different life stages have finally been killed off.
The hard thing about treatment is that one protocol does not work for everyone. It takes a lot of trial and error. There are three different forms of borrelia burgdorferi (the lyme bacteria), and different antibiotics and herbs are required for each different form. On top of this, there are usually co-infections that are transmitted along with the lyme bacteria at the time of the tick bite. These co-infections require specific antibiotics and herbs too.
What is a herxheimer reaction?
A herxheimer reaction occurs when you begin a treatment and your body is killing off bacteria faster than it can get rid of the bacteria’s toxins. This happens when an infection has been building up in your body for months or years. This reaction is why most people say that you have to feel worse before you can feel better with Lyme, because the more bacteria you kill off, the worse you feel for a period of time. The infection has likely made a home in your body for a long time, and it takes a lot to get it to leave.
I think this part is really important to understand. Unlike other illnesses, just because someone with chronic lyme has received a diagnosis and is being treated, that doesn’t mean that they’re feeling better. It takes a lot of time, trial and error, and pain and discomfort to get better from this disease.
But luckily for us, far from impossible!
Resources for More Information:
Documentary – Under Our Skin