Today’s post feels very vulnerable. It contains two short videos of me that are not the way I normally want people to view me. However, my desire for understanding for myself and for other people with Lyme and other tick-borne disease is stronger than my worries of what viewers might think about me.
I’ve been very sick lately. Partly this is a result of Herxheimer reactions I’m having from a powerful medication I’ve recently started using to fight one of my tick-borne diseases, bartonella. Bartonellosis is also sometimes called cat scratch disease.
Even though I’ve been treating Lyme disease for over five years, there are still people in my life who don’t really understand what herxing is and why treatment sometimes seems to make me worse. So, I decided to video myself going through a herx reaction as a way to help my friends understand.
I also want this information (both the videos and the written information here) to be available to the general public, especially other people with tick-borne diseases (TBDs), their families, and the medical community. TBDs are still not very well understood. For example, there are 26 known strains of bartonella, but when people get tested, they are typically only tested for one strain, bartonella henselea — the strain that causes cat scratch fever.
I never had a positive bartonella test, but because of my other symptoms, known tick bite and other positive TBD tests, I was diagnosed clinically. I hope this post will answer questions about what herxing is and why people with TBDs persist with a treatment that appears grueling.
Often when I tell people that I’m sicker because I’m doing a new treatment, they think I’m experiencing side effects from the drug. This is not the case. According to drugs.com:
A side effect is usually regarded as an undesirable secondary effect which occurs in addition to the desired therapeutic effect of a drug or medication.
In other words, side effects are never good. Whether you stay on a drug that’s causing side effects or not depends on the severity of the side effects and the usefulness of the drug; but drug side effects are never an indicator of efficacy.
A Herxheimer reaction also involves unpleasant symptoms (which can range from brief discomfort to serious and prolonged or even deadly symptoms) that occur after taking a medication. However, these symptoms are not side effects of the drug, itself. Instead, they are the result of massive die-off of pathogens by the antimicrobial medication (usually an antibiotic, but sometimes an antiparasitic or similar). These dead or dying microbes release toxins into the body, and symptoms result until the body is able to process and eliminate these toxins (detoxify).
This Chronic Illness Recovery website explains herxing well:
Herxing is believed to occur when injured or dead bacteria release their endotoxins into the blood and tissues faster than the body can comfortably handle it. This provokes a sudden and exaggerated inflammatory response.The treatment of many bacterial infections provokes a Herxheimer reaction. Herxing was originally observed in patients with acute infections such as syphilis. . . . The immune system response to acute infection is sometimes referred to as the immune cascade. For example, in the infamous anthrax attacks people died because by the time they got to hospital the anthrax organisms had multiplied to the point where killing [the anthrax organisms] also killed the patient.It has been reported that patients with chronic conditions or infections such as rheumatoid arthritis, Lyme, tuberculosis and louse-borne relapsing fever have also experienced herxing when treated with the appropriate antibiotics.Chronically ill patients are carrying a heavy load of intracellular pathogens by the time they become symptomatic. . . . The immune system response when these intracellular bacteria are recognized and killed causes a similar immune cascade.
- Herx symptoms are often stronger versions of what I was already experiencing as symptoms of tick-borne disease (TBD). For example, I often have increased pain, exhaustion, shortness of breath, and weakness when I herx, but these are already symptoms I’m living with due to TBDs. The herx just makes them more intense.
- Some herx symptoms are known symptoms (sometimes esoteric ones) of the TBD I’m treating. For example, burning on the soles of the feet and shin-bone pain are two classic symptoms of bartonella, both of which I have had pop up or worsen when I started a drug that treats bartonellosis. Air hunger and night sweats are classic babesiosis symptoms, both of which worsened for me when I started treating babesia a few years ago with antimalarial drugs. Also, some TBDs tend to act unilaterally and others act bilaterally, so a symptom that was present before in both sides of the body might worsen on one side only during a herx; bad reactions to medications and side effects are not usually this quirky. Although I started having joint pain soon after I was infected by a tick, it was not until I started treatment that I had joint swelling. Five days after starting the antibiotic Flagyl, my toes swelled up. Later, when I started Bicillin (an intramuscular injection of penicillin), my wrists and knees puffed up. Eventually, after sufficient treatment, my toes and joints regained their former appearance. Likewise, I was having trouble voicing when I woke up yesterday morning, and I was already exhausted and in pain, though happily, my voice had returned to full strength shortly before I started my infusion. (Also, I was working so hard while being videoed at explaining what was happening with me — using notes to try to be comprehensible and accurate — that I actually think I look less sick than I was. After we stopped taping, for example, I went into an extended coughing-and-trouble-breathing jag and also was just lying there and unable to move my arms much to rest up from the exertion, but hopefully you get the idea.) So when my voice went away again during the infusion (as you’ll see in the video), that was a pretty obvious sign of herxing, but I have been nonverbal most of the last six weeks, whether or not I’ve done a recent infusion.
- Herx symptoms usually hit hard and fast and then (eventually) go away. Most of the time, if I take a new antibiotic orally or by intramuscular injection, the herx will start within a day of the new treatment. Sometimes within a few hours. There are variations. Sometimes it starts out mild, with just one or two symptoms, and over the course of a few days, the symptom get stronger and others reveal themselves. If I am infusing the antibiotic (intravenous therapy), the herx usually starts within minutes (as you’ll see in the videos below). How long herxes last varies a lot. I seem to herx for much longer than most other Lymies I’ve talked to. I’m not sure why. Maybe it’s because I was so severely infected with so many pathogens for so long, and then I started aggressive treatment with multiple drugs, full strength, at once (which I will never do again and strongly advise against!), but I herxed for well over a year on some drugs (probably because they were in combination). With side effects, or other adverse reactions to drugs, usually I do not start out with that symptom, and then it appears and increases over time. With herxing, it’s the opposite: it starts out strong, and then it gets less severe. Eventually the herxing stops and I feel better on the antibiotic than I did before I started it.
- By now I am familiar with what most of my TBDs do and what my herxes feel like. Some examples are listed above: muscle and joint pain, exhaustion, tremor, weakness, dysphonia, etc. Other symptoms were harder for me to clue in to. For the first year or two after the tick bite, I was really crazy a lot of the time. I didn’t realize that the way I was feeling emotionally was a symptom of the TBDs. I also didn’t know what herxing was. So, I was already experiencing a lot of psychological and behavioral symptoms that I wasn’t really aware of. (I just thought everyone else was being unreasonable.) Then, when I went on antibiotics, the symptoms got worse. The more powerful and effective the treatment was, the crazier I got. This caused serious damage to my relationships and sense of self because I was not aware of what was happening, nor did I have the supports I needed to manage it. Now, before I start a new antibiotic, I tell key people in my life so they can be on the watch for any psychological symptoms I might be unaware of. However, after six years of dealing with this, I’m now very tuned in to what is “me,” and what is “the bugs eating my brain.” Fortunately, I don’t have psych herxes with every new drug. They seem to be worst for babesia (mood swings, desolation, hopelessness, paranoia) and Lyme (agitation and rage).
- Herxing subsides in time. I will not go through this every time I infuse this medication. Eventually it will make me feel better, not worse. I’m on several other antibiotics that have helped me improve a lot, and if I go off them, I tend to get worse (unfortunately). Meanwhile, the herx tells me the drug is doing what we want: killing the bacteria.
- Everyone’s herxes are different. There are some common bartonella symptoms, but each person’s constellation of symptoms are unique.
- If you are starting treatment for Lyme or other TBDs, I strongly recommend only going on one new treatment at a time until you are tolerating it well and also starting at low doses and ramping up over time. In both the short and long run, it’s safer and kinder to yourself not to try to tough out the most extreme herx possible.