Well, it's a real kick in the pants when you are struggling with a disabling illness and then its treatment makes you even sicker, but that's what many people with Lyme disease have to deal with, as well as some people with ME/CFS being treated with anti-virals. It's called a Herx reaction, and, as we have seen recently with our son, it can be completely incapacitating.
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 or retroviral infections 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, Jamie, 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, various articles, and other people
Milk thistle (Jamie 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
Hot water and lemon juice (I just recently read this; we haven't tried it yet).
Epsom salt baths (though people with CFS have to be careful that the bath isn't too warm)
Heat treatments, like sauna and hot tubs - THESE SHOULD BE AVOIDED BY ANYONE WHO HAS ME/CFS BECAUSE THE HEAT CAN MAKE OI MUCH WORSE, MAKING YOU VERY SICK.
None of these things helped Jamie very much (some, like Chlorella, we've just added). No matter what we did, he was still completely incapacitated while on antibiotics. Lyme experts say that there is no benefit to just enduring a severe Herx reaction; in fact, if your body can not clear the toxins, then you aren't making any progress against the illness. With this in mind, I had yet another phone consultation with Jamie's Lyme doctor this week, and we decided on a new plan. Even at a very small dose, Jamie was still severely ill, so we have decided to go VERY slowly and gradually with the antibiotics. The one he is currently trying is doxycycline, so he went completely off of it until the Herx symptoms cleared and he started to feel better (for him, 5-7 days), and now he is taking just 1 pill (100 mg) every 3 days. Once he seems to tolerate that fairly well, we will increase it to one pill every two days, and so on.
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 anti-viral treatment for ME/CFS. I'd love to hear your experiences, too, and if you know of any other ways to lessen Herx reactions.