And then one day my immune system woke up

Almost two months into my treatment I was excited to report to my doctor that I was already starting to feel better and asked the following question: “How much longer am I going to be on the antibiotics”? The reply,“six months to a year”, was spoken as increased dosages of my antibiotics were being scribbled on a prescription pad for me. On that cool crisp January day when I left the office I was thinking to myself, maybe they like to over-estimate the length of treatment time, six months to a year seems like an awfully long time. For a couple of days after that appointment I was feeling pretty down about the possibility of being on medication for a whole year, and then I was introduced to the Jarisch-Herxheimer Reaction. 

Early one morning I awoke shivering and lying in a puddle of sweat while experiencing some of the most intense pain in my lower back and legs that I had ever felt in my life. It wasn’t the fiery nerve sensation that I had grown somewhat accustomed too since the summer; it was a pulsing pain like somebody was stabbing me in my lower back. The pain was darting down my legs to my feet. My legs were cramping on and off throughout the day because it was impossible to relax them. There was not much I could do to relieve my discomfort so I just laid in bed, sometimes curled up in a ball crying and other times propped up against my pillows. As the pulsing pain started to subside, a cold, aching feeling started to creep into my joints. It was not the usual joint aches I experience from the Lyme disease. It was a sharp, painful feeling like jagged cubes of ice were scraping along the inside of my body. After a day of lying in bed thinking I was going to die, and then half a day of lying in bed feeling like a glacier was invading my joints, I was anxiously waiting for Monday morning to arrive so I could call my doctor.

Jarisch-Herxheimer Reaction, commonly referred to as a Herx reaction, occurs because the Lyme bacteria, under attack from the antibiotics, start to break up and die, releasing toxins and other harmful debris as they do so. This, in turn, causes the body’s immune system to temporarily go into overdrive in order to cope with the abrupt deluge of toxins and debris. A herx reaction can last from a few days to two weeks or more, depending on how disseminated the bacteria is in the body.  During this time, in addition to the temporary worsening of previous Lyme symptoms, one may also experience chills, fevers, headache, nausea, hives, rash and even a drop in blood pressure levels. In some patients the Herx reaction occur only once or twice (if at all) and with others continue throughout the course of treatment, usually lessening in severity.

Previously while discussing Lyme disease and treatment I mentioned that Lyme disease is known as the great imitator because the symptoms of the disease can mirror other ailments and go undetected. The bacteria can also trick your immune system into thinking they are not intruders, so your body will not produce the antibodies to fight it. During the first two months of my treatment many of my symptoms started to subside which led to some other issues, but looking at the big picture, I was starting to feel better (or so I thought). As the feeling in my feet came back, I realized the fiery/burning sensation that had been plaguing my legs, was actually in my feet too. When the feeling in my hands came back, I realized how stiff and achy they were; typing and picking things up became very bothersome.  My cognitive function started to improve; no downside to that one. The stiffness/inflammation in my shoulders that had been diagnosed as chronic tendonitis years earlier, started to decrease, and with that I gained a newfound flexibility that allowed me to execute yoga poses that I had never been able to achieve due to lack of flexibility and stiffness. As you can see, for the most part, my initial response to treatment was pretty positive but my immune system had yet to join in the fight against Lyme disease. 

I am now almost a year into my treatment, and am still experiencing Herx reactions. Some of my symptoms have disappeared, some have gotten worse,  and some new ones have arisen. The herx reaction doesn’t create new inflammation because it can't make bacteria appear where there weren't any bacteria before. When patients experience new symptoms they haven't had before, it's probably because the treatment is exposing more bacteria. Without the treatment, these hidden bacteria would not remain hidden forever. Eventually they would multiply to the point where they reveal themselves in new symptoms.

There are varying degrees of intensity in regards to the Herx reactions I have experienced ranging from mild to excruciating. I can go for months at a time without having one, and then an antibiotic change or I, pushing myself to do too much, will trigger a reaction. On the mild days I can get out of bed and go to work as I experience an increase of aches and pains in my joints.  By the end of the day I am exhausted and the brain fog sets in. On the more intense days I can’t get out of bed and just have to ride out the pain with a healthy dose of crying and occasional sleep. No matter the intensity or the length of the Herx reaction, it is always followed by a half to full day of the cold aching feeling creeping into the joints of whatever part of my body was affected by the Herx reaction. 

Much like the debates surrounding whether Lyme disease is chronic, and how it should be treated, there is also a debate about Herx reactions. Some people believe that severe Herx reactions are a sign of a poor treatment plan because Herxing greatly increases the toxic load, and others think it is a necessary for your immune system to react to the toxins that are released when large amounts of pathogens are being killed off and the body does not eliminate the toxins quickly enough.

If you have finished reading this post and are feeling like you want more details about what can occur during a Herx reaction, you’re in luck. Next time I plan to discuss, in great detail, the two most excruciating Herx reactions I have experienced to date.