LYME SCI: The dreaded Jarisch-Herxheimer reaction
Lyme disease and tick-borne diseases are complicated illnesses and because of that, treatment can be complex. Patients who’ve gone through treatment will often say “your symptoms get worse before they get better.” One of the reasons for this is something called a Jarisch-Herxheimer reaction.
The Jarisch-Herxheimer reaction –often shortened just to “Herxheimer” or “herxing”—happens after you start antibiotic treatment for spirochetal infections like syphilis, Lyme disease, and tick-borne relapsing-fever.
The reaction was first described in 1895 by Adolf Jarisch, an Austrian dermatologist, and later in 1902 by Karl Herxheimer, a German dermatologist. Both doctors documented a pattern of an increase in symptoms shortly after their syphilis patients started treatment.
“Herxing”
In his book “How Can I Get Better?” Dr. Richard Horowitz describes the Jarisch-Herxheimer (JH) flare as a “temporary worsening of the symptoms of Lyme disease that occurs when the Lyme spirochete is being killed off by antibiotics, creating inflammation…These JH reactions produce cytokines (TNF-alpha, IL-6, and IL-8), which then create inflammatory symptoms, including increased fever, muscle and joint pain, headaches, cognitive impairment, and a general worsening of the underlying symptomology.”
To promote healing, the inflammatory cytokines and the dying bacteria need to be cleared from the body. When the body can’t clear these toxins from the blood stream fast enough, it results in an acid imbalance that then impairs the enzymes needed to maintain a normal pH (balance of acidity to alkalinity). The more spirochetes that die, the stronger the reaction will be.
Ideally, the faster people can clear dead bacteria from their bodies, the sooner they will feel better. This clearing or detoxifying process is commonly known as “detox” with Lyme patients.
The onset for a Lyme herx is generally 48-72 hours after initiating antibiotics and can last for weeks, unlike with syphilis, which begins within hours and is usually complete within days.
According to Dr. Joseph Burrascano, Jr., for patients who have chronic or late-stage Lyme, the worst reaction is typically around the fourth week of treatment, very similar to “serum sickness” where one will have a reduction in white blood cells (leucopenia) and an increase in liver enzymes. A strong reaction at week four indicates ongoing infection.
How do you know if it’s a herx and not an adverse drug reaction?
It is important to distinguish between a herx and an adverse drug reaction (ADR). The onset of a Herxheimer reaction is somewhat diagnostic of a spirochetal infection. So, if you’re being treated for Lyme based on a clinical diagnosis, the herx can actually be a good sign that you are killing the right bacteria.
I’ve talked to patients who’ve had Herxheimer reactions and almost all of them tell me it is a very intense experience. One patient described it as an “altered state.” Said one: “Every cell in my body feels like it’s being crippled. It’s mentally overwhelming and physically exhausting. I usually have a pulsing feeling in my body which distinguishes it from a medication side effect.”
Adverse drug reactions, on the other hand, can range from mild to severe and can be mistaken for a herx. So how do you tell the difference?
Another patient distinguishes the two reactions as follows: “Herxes for me seem to be more ‘all over’ and include psych symptoms. Drug reactions (not allergic) seem to be more in line with what is described in the drug manufacturers papers. With antimicrobials, you can have both simultaneously, of course.”
Mild ADRs will typically resolve shortly after the medication is stopped. On the other hand, a severe allergic reaction, called anaphylaxis, causes swelling of the airways, and can be fatal if not treated immediately (outlined below).
It’s always important to let your doctor or pharmacist know when you are taking more than one medication at a time, because cross reactions may increase the potential for adverse reactions. Some supplements can also interact with medications so be sure to let your doctor know everything you are taking.
Good herx vs. bad herx
Dr. Horowitz describes the difference between a “good” herx and a “bad” herx. Basically, with a good herx, the patient will have a reduction of symptoms and begin to feel better after the flare. With a bad herx, the patient will return to their prior baseline after the flare with no reduction in symptoms overall.
The Herxheimer reaction is a normal part of treatment for late stage or chronic Lyme disease, but it is important to make it tolerable. A few methods one can utilize to reduce the flare are described below. In rare instances, a severe herx can be life threatening. I advise going to the nearest Emergency Room if you are experiencing extreme symptoms.
Keep track of symptoms
It is important that all adverse reactions be communicated to your doctor immediately. I recommend keeping a daily symptom diary, especially when changing medications. Be sure to note daily body temperature at the same time, any new symptoms, or worsening of existing symptoms. If a reaction continues beyond the expected frame of herxing, then drug sensitivity or other side effects should be considered.
How to reduce symptoms of a herx (adapted from Horowitz five-step approach)
- Alkalize: Alka-Seltzer Gold, buffered Vitamin C, or lemon-lime water at onset of symptoms
- Detox: support the elimination of toxins with activated charcoal, glutathione, N-Acetylcysteine (NAC), to name a few.Preview
- Reduce inflammation: Non-steroidal anti-inflammatories (NSAIDS), Low-Dose Naltrexone (LDN), antioxidants, reservatrol, alpha-lipoid acid. (see full list on pages 80-85)
- Supplement with minerals that are lost in the detox reaction: Magnesium, zinc, and copper.
- “Open up the drain”: Nutritional supplements, extra fluids, Epsom salt baths, mild exercise, infrared saunas.
I have also seen patients improve with Lymph drainage massage done by a licensed massage therapist or Physical Therapist who is trained in this technique and gentle water aerobics or aqua therapy.
David Skidmore, an artist who draws the “Lyme Loonies” cartoon series, offers the following take on herxing:
LymeSci is written by Lonnie Marcum, a Licensed Physical Therapist and mother of a daughter with Lyme. Follow her on Twitter: @LonnieRhea Email her at: lmarcum@lymedisease.org .
References
My friend’s daughter has chronic lyme. No one who has treated her has seen a case as bad as hers. She cannot tolerate antibiotics. Neither can she tolerate any of the things often given to Lyme patients to ease symptoms: including glutathione, activated charcoal, oxygen and ozone therapy. Everything she takes (even activated charcoal and glutathione) gives her a bad reaction and makes her feel worse. She cannot detox properly, either. They just tried ozone therapy and the reaction was brutal. For five years, no one has been able to figure out how to get her better or give her relief. They are desperate for help. They are now thinking of going to a clinic overseas that will cost 10s of thousands of dollars, with no guarantee she will improve. If anyone has any ideas, please share with me. Thank you in advance.
Someone like this should be in a Lyme hospital, but there is no such place at the moment. They can’t handle any toxic challenge and it is almost as if they would need to be on dialysis to navigate thru their toxic burden. When even mentioning something as benign as an Epsom salt bath creates a die-off reaction then metabolic support beyond anything that can be done as an out-patient is called for.
Carol-Sorry to hear about your friends daughter. My wife is exactly in the same situation. Yes, it would be nice if there were an in-patient option to assist patients, and their caregivers, who are suffering. We have wished this on so many occasions but of course there is no option like that. We wait for some type of major system failure that cannot be ignored, or death. It is sad that we treat our pets better. Best to all.
I also am finding myself in this dire situation. I have reacted badly to charcoal, chlorella, clay, epsom salt baths, far infrared sauna, glutathione, and many other supplements. I have been ill, every day, for over 38 years and now I am over 60. I cannot stick to any protocol, and I am currently considering that heavy metal poisoning, not showing on hair analysis, may be more of a problem for me. I am trying to get well before it is just too late for me, and in any case, I will not get all those years of suffering back. I am grateful for a husband who has provided for me as best he could. Not at all sure where in the world to go for treatment, and I am loathe to spend mega dollars for no guarantee of improvement. How can it be that we suffer so and there is no help for us? Where are all the philanthropists who are looking for a good cause? I just don’t understand this.
garlic raw
Carol, my son is in similar shape, Antibiotics crushed him, I think my son had Lyme’s and other co-infections for many years undiagnosed and dismissed by multiple doctors, then finally last year we said we believe this has to be Lyme disease, then his pediatrician said “My hands are tied” we can’t treat him, we went to NH for treatments and testing, and finally we were able to find a LLMD in NY who is working on getting detox and my son’s body healthier first before treatment with antimicrobials. not sure where you are in the country, but given the pain and years of watching my son go down hill I imagine your friend is having a very hard time. Cape Cod is in denial of the epidemic here, I believe it what contributed to the Opiate epidemic here on tick infested cape cod.
I live in New York. What is the doctor’s name you are using. Maybe he can help me. My name is Lisa.
Carol, I am so sorry to hear of your friends daughter. My daughter had severe reactions to many medications as well–one year landing her in the hospital six times for allergic reactions. The turning point for us was addressing her genetics (MTHFR, HLA, Histamine intolerance) and encompassing Mast Cell stabilizers into her treatment. Mast Cell Activation is a condition that is not understood by most doctors, although Dr. Theo Theoharides lectured at ILADS last year. My daughters doctor and I received a lot of guidance from Dr. Lawrence Afrin whom I attribute to basically saving her life. It turns out she was allergic to the filler in many of her medications (lactose and microcrystalline cellulose). I wrote about our experience here: http://tenaciouspt.blogspot.com/2016/12/when-lyme-disease-triggers-multiple.html
All best wishes to you and your friend, Lonnie
I’d like to share a recent experience I had with a VERY serious, near fatal drug reaction. I had started a new protocol with my LLMD and within three days of taking these new drugs, I was drop to the ground tired. I felt like I was coming down with the flu. If it was Herx, I thought, then this is the mother of all Herxes! I contacted my doctor and he prescribed a program to get me through it. A week into this, I was almost immobilized. Long story short, two and a half weeks in, I ended up in the ER, critically ill with my organs starting to shut down. I was hospitalized for a week and I am still recovering, 8 weeks later. The drug was Rifampin. If your LLMD prescribes this for you, be very aware that this drug can be very wrong for some people. The severe side effects were listed but considered very uncommon. Go figure it would be me that this would happen to! So, the lesson for all of us Lymies, knowing we’ll do almost anything to get better, is to be fully educated about the most severe side effects of the drugs you’re prescribed and take action immediately if your Herx seems out of proportion.
The Rifampin class drugs are often utilized because Doxycycline really should not be used in second round treatment because the Borrelia get so resistant to it. Unfortunately, there is a small minority of patients, but that may be 20% of patients, that have untoward reactions to the Rifampin class. And it is really difficult to tell Herxing from drug reaction in these folks. Most problematic.
By the fourth week of my treatment with Doxy, I found I was essentially unable to digest anything any more (food would go straight through virtually intact), I was very tired all the time, and some of the rashes started to wind up again. I figured this was due to the lack of intestinal flora, all wiped out by the Doxy, along with (presumably) the Lyme. Finished the course, and then took pro-biotics for a few days, and everything seemed to resolve itself for the most part. But I am disturbed to hear that something like this may re-occur in a month?? It’s bad enough I have so many weird ‘features’ going on with this disease; I sure don’t want to see any of it again!
Eric, does your practitioner have you on probiotics daily? If not, you should be taking them all the time, as well as eating foods that also have probiotics in them. The timing of your symptoms sounds like Herx. That’s when you need to really go into high body-support mode. My LLMD prescribed a liposomal glutathione to help lower cytokines. Low-dose naltrexone can help, the rights foods, SLEEP/REST, lemon water, Alka Seltzer Gold, etc. I’m sure you know all of this. There are a lot of online resources that can suggest supplements and food choices, that can help with Herx detox. I wish you all the best! Laurel
Laura, I”m glad you shared the information re: Rifampin- Thank you! I’m terrified of antibiotics because I had a very similar reaction to Tequin in ’03 and ended up in the ER in critical condition like you. I never was the same person after that reaction- permanent changes to my vision, hearing, circulatory system and soft tissue. Having to take antibiotics for Lyme terrified me but so far, I’ve managed other than the Herx reactions which were so unbearable for me at times that I really wanted to die. My Herx reactions involved, among other things, a lot of nausea and vomiting and if it were not for the Blogger, Tired of Lyme, I don’t think I would have survived. I’m all alone and so he was the only support I had. He suggested the alkaseltzer gold and the lemon and wow, that instantly cured my nausea!! I also take the activated charcoal every morning which seems to be just as effective. It certainly can’t hurt to do so and I’ve been nausea-free for over a month now.
Glad to know that you are on the road to recovery.
ALso, we do need Lyme hospital clinics. I should have been under 24/7 care for at least a month. I was so unbelievably ill and I honestly don’t know how I managed to care for myself as well as I did. I hired someone to assist me at one point but I was too sick to provide instruction and just figured that it was easier to ride it out alone. I also wish that there were Lyme patient advocates who would volunteer in local communities to assist home-bound patients. Having that kind of compassionate and knowledgeable care would have made a HUGE difference in my quality of life.
Liz, I really hope you are doing better. My hospital experience, which included an (inept) infectious disease doc–supposedly one of the best in the city where I live–was deplorable. ALL of the doctors who reviewed my case and treated me were incredibly ignorant of what ‘chronic Lyme’ is, and what it does to people. I had to constantly question some of the treatments they prescribed. So, essentially, I knew more about what to do for me than they did. It was one of the worst experiences of my life. I hope you can find an advocate to help you in the future because you need someone in your corner who knows your diagnosis and can speak up for you. Unfortunately, when I ended up in the hospital, I was on my own because my husband was home recovering from a knee replacement. I see the need to create an advocacy group in my city and am thinking about how to do just that. You are in my thoughts that you find remission and have some joyful, healthful days. In health…Laurel
Laurel, I too would like to start an advocacy group in my city/county and not sure how to go about that. Please keep me informed about any ideas or progress you make! Not having someone to advocate for us during any illness is dangerous enough but Lyme patients really need someone who fully understands the multisytemic nature of symptoms.
My current health status is not good. My neuro-symptoms are progressing and several of my cranial nerves are being affected which is as frightening as it is painful. My vagus nerve is affecting many things and I’ve got trigeminal neuralgia the ‘ suicide disease’ which is truly suicidal at times.
My 2003 hospital experience ( due to flu) was a nightmare, terrifying actually and I was near death so I know exactly how terrified you must have been. I knew the doctors were literally killing me because they refused to acknowledge that my temporary ‘ coma’, my vasculitis, severe joint pain etc.. was caused by Tequin. When I was awake and coherent enough, I finally told my husband to get me a soda pop ( raise my blood sugar), some crackers and unplug me from their ‘ life support’ and I literally walked out of the hospital, came home and researched and contacted friends who are physicians and got help that way. No patient should have to do that in my condition. When I saw the Tequin doctor for a checkup, she told, me that I was a difficult patient because my symptoms were rare and that I had Lupus ( worst SED rate results she had ever seen) AND because she did not belong to the same network that the hospital did, she was not allowed to read my hospital records. I asked to see my records, that I PAID to have faxed to her, and the hospital had blacked out every line!!!! How can that be legal? I was so angry that I scolded her and told her to go into her office and just Google Tequin side effects and then come back to me so that we could have an intelligent informed conversation. She did and then said that I was again difficult because fluoroquinolone side effects are rare! That was the last time I ever trusted any physician or health management company. I found a board certified famllypreventive/functional medical doctor that I dearly respect and trust and he doesn’t accept insurance for obvious reasons and I’m glad he doesn’t. The thought that any patient would trust a physician that accepts insurance and is part of a health management system is scary but an unfortunate truth about our corrupt medical industry.
Take Care Laurel and do stay in touch.
We really DO need advocates and advocacy groups. I think our hospital experiences were similar in that the doctors gave NO credibility to the idea of ‘chronic Lyme’. This just chaps me, but…I’m used to it. Things came up in my labs that, if they had only taken the time to research chronic Lyme, they would have known that was a factor. NEVER AGAIN.
You might first try a facebook page geared to your location. Honestly, I’ve been too sick this year to start anything but that was one of the thoughts I had. I also went to a workshop earlier this year and got a few names of people who would like to get something started. I will likely contact them and have a get-together and see what we can collectively come up with. There is a local publication here that would allow me to run a free ‘ad’, of sorts, and I will look into that. There are a lot more people like us out there who need a life line. I hope you are starting to feel better…and YES about the insurance/medical industry! Crooks, all of them, INCLUDING most of the doctors. Blessings to you, Liz
There are some groups of lyme patients that cannot do herxes at all, because of the consequences. These are the ones Dr. Horowitz describes as too “fragile” for his new protocol. In fact, they are too fragile for any protocol that results in a herx. This includes some with psych symptoms and also ALS/Lyme people, maybe others. We really need major govt involvement and funding in all the aspects of this disease. Noting that coinfections will make it worse too.
If someone does not find a better way to reduce the herx symptoms so that they can take full doses and maybe make more progress, then they are going to be an orphan group. Alka seltzer gold and all those other things are really not enough.
” all those other things” in regard to treatments, are difficult to manage for patients who are extremely ill. I’m fortunate that I have enough education and experience int he medical field that I could make safe and sound decisions but even so, it was difficult to get up out of a chair or bed at times and take my meds and herbal supplements and cook a nutritious meal. I had to keep a daily health journal listing all my meds, supplements and meals, blood pressure/heart rate and symptoms in case I had to call an ambulance or visit the ER. It was just too difficult to remember everything and at times, too difficult to speak at all. By the way, anyone can purchase a health journal called HEALTH MINDER PERSONAL WELLNESS JOURNAL on amazon.com. I believe all Lyme patients should use this and carry it with them at all times in case of emergency. It also helps the doctors who are treating them. It’s very easy to fill out each form each day.
Does anyone know if involuntary muscle twitching and rocking is also a herx reaction? I took a round of minocycline and I’ve been rocking and twitching for almost 2 months. If it isn’t a herx reaction can someone say something about that? Thanks.
My son still has similar muscle twitching, but don’t think it’s herx, just part of the Lyme &Co-infections. My son has Lyme, Bartonella, Babesia (which we treated with Mepron & Zithromax, about a year ago, however we are still battling them all. Just as a side note Rifampin crushed my son when we gave it to him early in his treatments prior to treating Babesia, we discontinued Rifampin fairly quickly after speaking to a different LLMD in NY
(sorry spelling isn’t my thing)
David, I’m so sorry you have a CHILD with Lyme. I so hope he gets better and that you got it early. I think it’s really important for people to share bad experiences they’ve had with Rifampin. Using this drug for Lyme is a rather recent protocol and it’s good to get it out there that there can be life-threatening side effects. I’m hearing a lot more about Mepron so I need to research that drug and know what it is. I started a new protocol this morning! You are also correct that the muscle twitching is probably the diseases. Mine used to be really bad but it has mostly abated. I do know that Minocycline can cause neuro side effects so hopefully Julie’s doctor is on it. Best of luck to you and your son. Here’s to his perfect wellness! Laurel
Julie, I have heard of people having pretty intense neurological reactions to minocycline. Check in with your physician. It could be Herx? but it could also be a side effect of the drug. As you know, Lyme seriously impacts the brain and causes weird things like twitching, etc. Are you detoxing? If the involuntary movement doesn’t stop while you’re on the mino, I’d get to your doctor asap as it could be a side effect of the drug. Herxes generally phase out. They can last as long as two months but not usually. I’m sorry you have Lyme disease. I hope your treatment gets you to remission. Blessings, Laurel
Yes, I have a lot of involuntary twitching and pulsing and weird sensations under the skin. Really distracting sometimes.
Julie, Minocycline can cause drug induced Lupus. There are legitimate studies that provide very strong evidence of this. Joint pain frequently accompanies the onset. I had a very bad reaction to Minocycline, and subsequently tested positive for ANA. The good news is that in the study most people’s ANA went to normal within 6 months. Two years was the longest, but symptoms begin to resolve quickly, after stopping.
I am so thankful for this site. It has provided me with a great amount of information, that validates and explains many of the symptoms, etc., I have experienced. I have chosen not to use antibiotics. I made this decision after reading many personal accounts, of people that have worked amazingly and courageously hard, to beat this disease, on different antibiotic protocols. I know from a lot of research, I have an alternative. This alternative is MMS. Anyone searching this treatment will be hit by a barrage of misinformation, so if anyone does choose to research this for themselves, look beyond the disinformation and trolls trying to sideline this option. I still have a ways to go, to eradicate this invader. I am using an enzyme; Serepeptase, to attack the biofilms, MMSI protocol, and I am adding MMSII Protocol in a week, while I am on vacation, and a PEMF machine to assist in getting the MMS throughout my body, and detoxification. I am aware there are some other people who have used MMS, and to my knowledge, have successfully recovered from Lyme after a few months. I am posting this, so other people know to look into this, especially for those that can not tolerate the use of antibiotics. I hope I am successful with the process I have chosen, and will repost in a few weeks to update, in case anyone is interested. I do believe that there is incentive for the CDC and drug manufacturers to keep a lid on the facts, while they work to develop a vaccine. I believe this is motivated by profit, and will be marketed by fear, when the time comes to distribute the new “cure.” I believe they will produce honest numbers, when the timing benefits the sale of a pharmaceutical treatment, which I would treat with skepticism.
It’s very important that drug reactions are not dismissed as Herxheimer reactions or worsening of the original condition. Minocycline can cause drug induced Lupus. That’s scary stuff.
DYNAMIC HEALTH in Idaho has a very successful magnet therapy. Also, Nutramedix has herbal drops that have helped me walk again called Burbur and Pinella brain and nerve cleanse. Also plexis slim and biocleanse and probiotic 5 work well with Lyme. Just Google any of those 3 companies. Very helpful!!! I’m not a Dr, but just sharing what’s helped me.
Hi. My husband had a tick bite a couple years ago. He had tested negative, but had the lyme rash. Anyway, he didn’t really do anything to treat it. Ok. So he has started eating really healthy lately. Low carb/ketogenic for the most part and started jiu jitsu in September. He has extreme pain most of the time now and feels sick. Could eating healthy and heavy exercise cause him to herx?
Hi, Emily…
This doesn’t sound like Herx but more like Lyme disease. Herxes are caused by treating the disease with medications and antimicrobials and the ‘sickness’ that follows is from pathogen die off.. If he had the bite and related rash but a negative test, my guess is that he does, in fact, have Lyme disease. I am not a doctor but a 25 year Lyme patient who wasn’t diagnosed until I’d had it 9 years. If you go to Dr. Richard Horowitz’s website you can find a checklist that helps a person who suspects Lyme infection ‘self diagnose’ using clinical symptoms. My advice is for your husband to get to a Lyme literate doctor (LLMD) and get on this as soon as possible. The longer the disease is left without treatment the worse it gets. The testing process has improved signficantly. A LLMD will know how to approach this. Diet and exercise will not cause a Herx. I hope this helps, and all the best to you and your hubby. Don’t wait…