What exactly is a Herx reaction? Well, for starters, the word "Herx" is a shortened nickname. Here's one of the clearest explanations I found on Lyme Disease Blog:
The Jarisch-Herxheimer reaction (or Herx for short) is an inflammatory response to antibiotic treatment for certain diseases (although some non-antibiotic treatments can produce the reaction). It’s also referred to as a “healing crisis” or “die-off,” meaning a detoxification of dead or dying bacteria and other pathogenic organisms in the body.
....A person with one of the Herx-causing infections has a certain number of tiny foreign organisms in their body. The number of infectious organisms can be in the thousands or millions. Each individual organism is made up of its own cell with its own internal structure and contents. If that cell dies through an attack by the immune system or an antibiotic drug, it bursts open and releases its contents. Millions of cells bursting at the same time introduces a significant amount of cellular material in the body. These spilled contents cause the Herxheimr reaction, When the spilled contents are cleared from the body, the reaction stops.
Historically, the theory has been that the reaction is caused by dying organisms releasing endotoxins. Recent experimental research suggests that the rapid and massive overstimulation of the patient’s immune system causes the symptoms. The immune system’s job is to recognize and attack foreign antigens in the body. When dead organisms spill their internal contents, a huge number of foreign antigens become present all at once. The body reacts by releasing immune system modulators (or cytokines) (e.g., Interleukin 6, Interleukin 8, and tumor necrosis factor, among others). These cytokines are what cause the fever, chills, and low blood pressure. Either way, the body gets assaulted and fights back.
As the blog post explains further along, the phenomenon was named with respect to syphilis treatment. You may or may not know that syphilis has a lot of similarities to Lyme disease; both are caused by a type of bacteria called spirochetes which can be very difficult to get rid of and tend to leave the blood stream and settle into joints and tissues. Given the explanation above and the immune system's role in a Herx reaction, it makes sense that some people with ME/CFS being treated for viral infections or yeast overgrowth also experience Herx reactions; as is typical, our immune systems over-react.
Unfortunately, we have had to become experts in Herx reactions because our 17-year old son is going through such a rough time right now. Treating babesia and bartonella (two other tick-borne infections that Jamie has as well as Lyme) can also cause Herx reactions, and the immune dysfunction just makes it all that much worse. That blog post I quoted from above says that Herx reactions can last days or sometimes as much as two weeks, but Jamie - and many others with both CFS and Lyme - has experienced a severe worsening of symptoms that has already lasted many months.
He has been so totally disabled by Herx reactions that we have become desperate to find some way to help him, so I've done a lot of research and have talked to a lot of people. Here is a list of some remedies that I've heard about to lessen Herx reactions, from our doctor, our dietician, various articles, and other people:
- Burbur and parsley drops (the link is to the cheapest source I could find)
- Chlorella (our dietician recommends King Chlorella brand)
- Milk thistle (my son already took it, but I've increased the dose; it helps the liver to work more effectively, filtering out toxins; it's essential for anyone who takes a lot of supplements and/or medications)
- Extra soluble fiber (see UPDATE below)
- Water and lemon juice (helps the body to become more alkaline)
- Epsom salt baths (though people with ME/CFS have to be careful that the bath isn't too warm - it should be below body temperature to avoid triggering a bad Orthostatic Intolerance response)
- Heat treatments, like sauna and hot tubs - these should be avoided by anyone with ME/CFS because the heat dilates blood vessels, making OI much worse and making you feel very sick.
So far, this seems to be working. He was able to go to school every day this week, though he is still very low in energy. He's been coming home at 3 pm each day, completely exhausted, unable to do any homework at all. Believe me, this is a huge improvement over where he was!
I'll let you know how it goes, but I thought I'd share our experiences and learnings with you because I know others are struggling with these same issues, either with Lyme or with antiviral treatment for ME/CFS. I'd love to hear your experiences, too, and if you know of any other ways to lessen Herx reactions.
I wrote this post five years ago, and my son is still struggling with Herx reactions and is still very sensitive to even small doses to treat his three tick infections...though he has made tremendous progress in that time and can now live a much more active, full life. We have learned some more things in the past five years for managing Herx reactions:
- Adjust the Dose. Your first line of defense should be to reduce the dose of whatever you are taking to kill the infections (antibiotics, antivirals, or antifungals, whether prescription or herbal) until the Herx is tolerable. As I said above, it does no good to suffer through a severe Herx - "no pain, no gain" doesn't work here! You need to give your body a chance to keep up with detox and get rid of the by-products of your treatments. My son switched to a 100% herbal protocol years ago and hasn't had any antibiotics for tick infections in over 4 years now, but he still reacts strongly to the herbal treatment. You may have to go super-low dose, as I described above for my son, taking only 1 pill every 3 days (or for him now, just 1 drop of the herbal blend a day when 30 drops a day is standard), but you have to find the "sweet spot" for you - where you can tolerate the treatment and still function. Then, as you adjust and feel better, you can very slowly and gradually increase the dose, but again, only as much as is tolerated. In this way, you will make slow but steady progress and still be able to function.
- Help the Liver and Increase Anti-Inflammatories. We read about these two supplements on a blog post at Lilac and Lyme, and they have helped my son considerably. He takes extra circumin (the active ingredient in turmeric, a potent anti-inflammatory - our dietician recommended Meriva brand) and dandelion root when his Herx symptoms flare up. He was already taking both of these for ME/CFS (me, too), but now he has an extra bottle of each and takes 2-6 extra capsules of each on days when his joint pain or other Lyme symptoms get bad. He says these two extras have really helped! NOTE: It is best for people with ME/CFS not to take TOO much dandelion root because at higher doses, it can act as a diuretic and cause fluid loss (which is very bad for OI and will make all symptoms worse).
- Help Your Body to Eliminate the Toxins. One way to help your body with this detox process and manage the Herx reaction is to help your body eliminate the toxins quicker. You want to help clear out all the dead bugs and their by-products. Our dietician recommended the following on alternate days for 2-3 weeks or until you feel better, in between meals and meds (be sure not to take these close to food, medications, or supplements because they will sweep out everything in its way, not just the bad stuff. Also be sure you can get to the bathroom!):
This combined approach, with the new treatments combined with the older ones, keeps my son functioning well most days.
What works best for you for Herx reactions?