This is a key piece of the chronic Lyme puzzle. The terms goes back to the early treatment of syphilis. Drs Jarish and Herxheimer noted that when patients were first treated for syphilis they frequently experienced a toxic, dramatic deterioration in their symptoms, after which the patients would show signs of improvement. This response was named the Jarish-Herxheimer reaction. Over time it was shortened to Herxheimer and then Herx reaction. The term has even become a verb. Patients frequently speak of "herxing." It turns out that only a small number of infectious diseases are know to be associated with a Herxheimer reaction. In addition to syphilis and Lyme, it is limited to several obscure spirochetal diseases such as relapsing fever, rat bite fever and to anthrax. It is a short list. Having a Herxheimer reaction when treated for Lyme is considered good evidence that the diagnosis was on the mark. A Lyme Herxcheimer may not be as severe as that seen with other diseases such as syphilis, but is usually not subtle. It typically starts several days or a week after antibiotic treatment is started in earnest. The primary symptom is profound fatigue, which can at times be disabling. Patients may experience low grade fevers, chills, flu like symptoms and joint and muscle pains. A brain Herx occurs when cognitive and or neurological symptoms temporarily get worse. They are many variations of the Herx response. The bottom line is that there is a worsening of pre-treatment symptoms. The typical Herx reaction lasts for 3 t0 4 weeks, but it can persist for months is some cases. Usually after the Herx abates the patient starts to suddenly feel better and have more energy. The primary Lyme symptoms may not start to imrove for weeks or months yet to come. There are different theories about how to manage a Herx reaction. Some physicians start patients off with very low doses of antibiotics and gradually ramp them up over many months in an effort to stave off the Herx response. I have not found this response effective. I have seen patients treated by other physicians who have still not reached a therapeutic dose of antibiotics based on this method. In my experience a Herx is something the patient is going to have to deal with, so I prefer to jump right into regular doses of medicines. If a Herx is excessive, then the antibiotic(s) can be held for 48 hours and re-introduced at a lower dose. I still try to ramp up quickly. Other methods have been used to mitigate the Herx. A low dose of prednisone can be used. Many physicians would avoid this. Vitamin D can be used on a short term basis because of its anti-inflammatory properties, although I do not recommend long term use of this supplement. Other strategies are used by other clinicians.
A Herxheimer reaction probably occurs for a couple of reasons. First, there is probably a huge number of spirochete organisms present in the body if killing them is causing a systemic reaction, experienced throughout your entire body. Second, there may be something unique about the immue reaction to the organism. The intensely red rash which can been seen with early infection indicates a marked inflammatory response. Apparently, the killing of the organisms is also associated with a dramatic inflammatory response. This is medicated by special proteins called cytokines, which mediate the functions of various aspects of the immune response. Lyme may be associated with a greater amount of cytokine release than is typically seen with other infectious processes. These cytokines are categorized into various classes, such as interferons, interleukins, tumor necrosis factor and others. Specifically, it may be the germ fighting molecule interferon which causes much of the Herxheimer reaction. When you have the flu, it is not the germ which makes you feel so sick. It actually the release of cytokines, like interferon which causes the so called "flu like symptoms." This is pretty much what happens with a Herxheimer reaction. It just lasts longer than the flu does. It also is not associated with a high fever like the flu. With the flu it is probably the particles themselves which become pyrogens and trigger the germ killing response of elevating your body temperature.
Herxheimer reactions are seen by some as a good thing. It means the buggers are being killed. It is also associated with an increased immune response to Lyme. Frequently while it the throws of such a reaction, a repeat Lyme serological test, like the Western Blot test will become positive when it was previously negative. This is called sero-conversion. This is excellent news which confirms the accuracy of the diagnosis and the correctness of the treatment.
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What do you make of Dr. Stratton's explanation of obligatory secondary porphyria with Cpn die-off? In the online Cpn community (much info at cpnhelp.org), porphyria is considered to be just as important and prevalent (and even more of a danger) in treating Cpn as endotoxin reactions are. Patients desperately take measures to keep secondary porphyria in check as it is horrible (especially the psych symptoms) and can be fatal. Testing for porphyrins is reportedly difficult.
How do you deal with this in your patients with Cpn?
Cpn is hard to diagnose. PCR is not useful because it is intracellular like other L-forms and therefore not found in fluid compartments. Most frequently Cpn is suggested when IgG titers are 1:512 or 1:1024. It is usually present in concert with other L-form bacteria like Mycoplasmas and Lyme. Porphyria is a very rare inherited disorder. Physicians learn about this disease which can mimic many illnesses. It is a rare disease. I have not seen a case in 25 years of practice. I have not seen Cpn associated with a Herx which is unusual. Psych Herxs can occur with Lyme and other pathogens. I suspect the treatment is the same as that for Herx reactions in general. IV fluids may help. Steroids may help. Holding antibotics and then gradually ramping up the dose may work. Stratton seems to believe that Cpn acts by itself. I see it as part of a greater polymicrobial disease. I don't think anti-oxidants, vitamins and other recommended therapies are effective. There is an exception. Rarely I use high doses of vit D short term as a steroid like molecule.
I have seen the Herxheimer reaction two different times in my husband while being treated for Lyme disease. Once when he was diagnosed with late stage lyme and then again when he began treatment after a serious and then again when he began treatment after he came out of the hospital 4 or 5 months later. The exact same flu-like symtoms occurred. I believe that this shows some truth that lyme disease is a long term illness. Western Blot test also proved positive.
I have experienced many Herxheimer reactions, but I am curious about the time frame you specify? 3-4 weeks?
In my case there has always been constant discomfort for weeks on end that could match this description, but with the occasional "storm" where symptoms go through the roof for just a few hours, or max 2-3 days.
I was under the impression that it is this "peak" that is referred to as a Herxheimer reaction in the true sense of the word?
I am one where my doctor is going slowly - if not - I would be in the hospital where they would deem Chronic Lyme does not exist and discontinue my treatment. Since those of us with Chronic Lyme can be super hypersensitive to medications, I believe part of my reactions were a sensitivity to the antibiotic. Since changing to a different one - still going slowly - I will most likely have many herx reactions as each dose goes higher, but I am getting the herx reactions so something beneficial is happening. The patient has to be able to withstand treatments or they will be most likely abandoned benefiting no one.
Thanks for all the wonderful information here :-)
I am wondering how treatment for Chronic Lyme and associated dystonia is handled? My daughter is being brought home from a hospital where Lyme is not recognized and she is severely compromised by her dystonia which has left her unable to walk or speak. She will be seeing a LLMD for treatment but I have been reading about herxing and I am really scared. Is there anyone out there who had a similar problem and is now better?
This is probably the BEST description of Herxing I've found. People say "symtoms get worse" but my symmptoms are not necessarily the same as my herx. My herxes tend to be just like you describe, almost flu like: chills, fever, extreme fatigue. On the other hand, whenever I was on a powerful IV abx, it exaggerated my neuro-cog stuff FIRST (tremors/ticks, memory, thinking clearly) THEN it would move to the chills/fever/extreme fatigue. But rarely does it do anything to my joint issues which just seemed to have improved over the 2 years i've been treating this. Somedays they stiffer than others but not nearly as bad as they were right before I started treatment.
anyway... I always seem a little relieved after the chills/fever thing but the fatigue always hangs on for a while.
Thanks for your blog! :)
I have had several people ask me how to know if it was just lymes symptoms or an actual herx.....At first, it was hard for me to tell a herx from actual lyme symptoms....Like wild Dingo said, after it moves to the flu stage, and I make it through that ( ugh), my symptoms start to leave and I start to feel good for maybe 2 or 3 weeks.........Usually after this 2 or 3 week feel good period, then I start hexing again...This is crazzzzy stuff....
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