What is "Herxing"

I keep seeing the word "herxing" in relation to AP treatment. What does it mean?

Report post

35 replies. Join the discussion

Herxing is caused by the die-off of bacteria and your body's reaction to their decomposing little bodies.That is the short simple answer.For the technical stuff read up on it at www.roadback.org

Report post

Thank-you for your response. I appreciate it.

Report post

The Jarisch-Herxheimber Reaction, is a drug reaction named after the doctors who first described the reactions to treatment for syphilis, Adolph Jarisch and Karl Herxheimer. Both doctors were dermatologists mainly treating syphilitic lesions of the skin. They found that in response to treatment, many patients developed not only fever, perspiration, night sweats, nausea and vomiting, but their skin lesions became larger and more inflamed before settling down and healing.

Today, the term describe reactions to anti-biotic treatments of conditions or illnesses that are thought to be caused by a spirochete. The theory behind “herxing” suggests that a wide range of symptoms can result from treatments as they work to kill off the organisms that cause the illness. It is considered a healing crisis, a detox reaction, or die-off syndrome. The timing of the onset, the intensity and the duration of these symptoms can vary dramatically from patient to patient.

On this forum “herxing” is used to described side effects of AP therapy. It is my understanding that proponents of this course of therapy believe that scleroderma is triggered by bacterial infection and that AP is working when patients “herx”. It is an expected side effect of the protocol.

A major problem is that Herx symptoms are similar to those the listed side effects by the drug manufacturer side effects (listed below) which makes it difficult for the patient and treating physician to determine if it is a drug reaction or herx. Also, AP is generally thought of as a benign therapeutic choice. A “why not, what do you have to loose?” choice. When herx symptoms are significant or prolonged and include pain, cognitive dysfunction, fevers, nausea and dizziness and some patients choose not to continue therapy.


Minocycline side effects listed by drug manufacturer:


"Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat. Stop using minocycline and call your doctor at once if you have any of these serious side effects:
severe headache, dizziness, blurred vision;
fever, chills, body aches, flu symptoms;
severe blistering, peeling, and red skin rash;
urinating less than usual or not at all;
pale or yellowed skin, dark colored urine, fever, confusion or weakness;
severe pain in your upper stomach spreading to your back, nausea and vomiting, fast heart rate;
loss of appetite, jaundice (yellowing of the skin or eyes); or
easy bruising or bleeding, unusual weakness."

Report post

Wow, thanks for this explanation. This is exactly the kind of information I was looking for but had not yet found during my searches. Thanks again.

Report post

Below are symptoms described as a "herx" response. Many overlap with those listed above as the manufacturer warning Minocycline side effects. I find the overlap confusing and concerning. Herx or allergic reaction some of these side effects are dangerous and require immediate medical attention.

Most common Herx response:
◦ nausea,
◦ headache,
◦ swollen glands,
◦ bloating,
◦ constipation or diarrhea,
◦ increased joint or muscle pain,
muscle weakness
◦ elevated heart rate,
◦ chills, cold extremeties,
◦ itching, scratching, nail biting,
◦ flu-like body ache, unusual perspiration
◦ fever (usually low grade),
◦ hypotension (low blood pressure),
◦ Itching, hives and rash
◦ depression
◦ sleep disturbances
◦ brain fog
◦ chest pain, pressure

Report post

Thanks for this. I experience many of those symptoms quite regularly with scleroderma and I am not on any kind of AP regimen. I have suffered so much pain and discomfort up to now that I really don't think I could take any more so I guess this path is not for me.

Report post

Quite honestly, scleroderma folks don't herx (traditionally) like RA folks - Here's the deal - for us (mom and my family) no amount of temporary herxing (it goes away!) would keep us away from this treatment. This disease is like a train - it is terribly fast moving and debilitating, once it gains speed, it will plow into anything on the tracks because it can't stop. My mom chose "possible" herxing over the alternative. To each his own. She has not had terrible herxing at all - she's been on Minocycline since June and we praise God that we found AP. I hate to think about where she'd be now if we did not.

Report post

This is a good topic and valuable thread. Thanks for getting it started Nikki. Herxing is mentioned "here and there" in the body of threads, but I have never really seen it discussed as an ongoing topic. I hope others will chime in with their thoughts on it. I'm glad you did MKBeliever.

Herxing is a fairly common side effect of AP Therapy. Some experience it mildly or not at all. For others it is debilitating and patients discontinue the therapy. I have a few concerns about it.

My first is, that there is a major symptom over lap between the drug company's warnings and "herxing". As a result significant symptoms that may require medical attention are too easily dismissed as "herxing". I find this confusing, unsafe and counter intuitive. How do you know which is which? Are severe "herxing" symptoms really good for you?

Secondly, "herxing" is down played as a side effect or negative to AP. This therapy is regularly promoted as "risk free, nothing to loose, why not try it". Herxing is an after thought, as symptoms arise. It is rarely, if ever, mentioned upfront as a negative to the therapy.

Lastly, I have been on the sclero forum for over 3 years observed many folks come and go. At the encouragement of members here, some have enthusiastically tried AP. After beginning the therapy, some post that they are having a hard time tolerating it. They receive an abundance of encouragement from everyone which is great. Occasionally they receive medical advice about their symptoms and symptom management, which isn't. We aren't doctors. The thing that bothers me the most though, is that many of them we never hear from again. Why not?

I personally know a few. They have shared with me a sense of conflict, disappointment and failure. They had a bad reaction to AP and couldn't bear the side effects or the herxing and didn't stick it out. They have kept this to themselves and not shared their decision to opt out of AP for fear of criticism.

I think we can all learn a tremendous amount from each other here on this forum and hope that the pro's and con's of all therapies can be discussed openly and honestly. We all know that there is no therapy that is completely benign or one that works for all of us. Each has trade-offs. Herxing is one of the negatives of AP. Sometimes it is so challenging, patients choose not to pursue the treatment. I hope people feel okay discussing that as well as the merits of the therapy.

Report post

I agree completely with you Lauren - I think this is a pretty important topic to discuss on a site like this. I found it kind of odd that a lot of people were talking about herxing without explaining what it meant; I guess it was assumed that everybody here knew about it.

I am still reluctant to try minocycline antibiotic therapy; from what I understand it is one of the drugs in the tetracycline family and as a teenager with a mild case of acne tetracycline was prescribed for me and if I remember correctly I did not tolerate it well - in fact it made me quite sick and I had to stop it. When I first experienced the rash that preceded what I thought was lupus (but ended up being scleroderma), I was drinking an acidophilus formula that was minimally effective and I was thinking of trying acidophilus again now instead of minocycline to see if it will be effective with my case of scleroderma and pulmonary fibrosis. I would be interested to hear from anyone else who might have tried this as an alternative to a medical prescription such as minocycline.

Report post

(Please ignore any/all spelling errors)
Two years ago, after reading AP posts on several SD boards and much research, I decided to give it a try. I was doing well and my sclero DR. reluctantly let me try. He had several patients (over a 10 yr. period) use AP without much success, so was hesitant. I argued that I have read about successes and he was quite familiar with the Roadback Foundation/Scammel book and Dr. Trentham. He agreed that I should try because I would ALWAYS wonder if AP would "cure" sclero., even though I was doing amazingly well after being DX 16 yrs ago. I felt a cure was better than just maintaining my health... I was thrilled and my journey began!!
Unfortunately, after starting treatment for several days, I became so ill that I could not function. I am a busy wife/Mom and could barely drive to school to pick up my daughters. Working was a nightmare. I became sooo dizzy/nauseous that I actually fell-out the front door of my home, while reaching for the newspaper. My breathing quickened and my heart continually raced.
Even though, I work at a library and consider myself a college-educated "semi-knowledgeable" person, ALL common sense was thrown aside... I believed that all my dangerous side effects from the mino was a form of HERXING (my Dr. reduced dosage and we pulsed slowly at lower dose) and I would call several different friends that used AP successfully, to gain their support and help me to continue this treatment and "get through" the horrible herxing.
After a month, I became so ill, my husband called my Dr. and they both convinced me to stop AP....
Physically, I was drained...any symptoms that had previously subsided, had now, exacerbated. New symptoms appeared from stressing my body.
Emotionally, I was so upset and sad. I felt like a failure. Why did AP work for so many, but not me? These are simple antibiotics? Should I travel to Boston like my friends to see Dr. T and try another form...different dosage?
I didn't want to ever feel this sick again and decided to accept that the treatment I was using before attempting AP was the right option for ME. I have always been sensitive to antibiotics and DID NOT want to try any other generic/brands. I was sad and physically/emotionally spent...
At the time, I really didn't want to post my adverse reaction to AP because I knew that others would challenge my situation and I already felt like a failure. Intellectually, I knew that I wasn't a failure and simply had a bad reaction to an alternative treatment that has worked for others, just not for me.....
In my heart, I guess I was hoping for better results because I was/am so happy for all the other successes. We are all desperate to end this disease. Lesson learned....
So....if one treatment doesn't work for you, try another!!! AP is a viable option and has helped many. It just wasn't for me. I am back to "normal" and happily functioning as wife/Mom and love my part-time job, as well as my volunteer work. I still struggle with raynaud's and my voice has been hoarse (had to increase my prilosec and stop eating late in the evening...reflux) this past year. I am currently taking plaquenil,cozaar and prilosec. All in all, I feel very lucky because I know my health could change. If it does, I will alter my treatment to suit the situation. I am continuously monitored by my "team" of medical professionals and try to take care of myself physically/mentally. I want others to feel comfortable expressing their successes and failures with all the various treatments for sclero. We're ALL on the same team to fight this disease..

I am stealing Steve's (member of another sclero-board) signature motto.
"My Views are personal and not subject to debate..Don't compare your life to others. You have no idea what their journey is all about.."
Kathleen xoxo

Report post

Thanks for posting Kathleen. You were one of the people I was referring who is very hesitant to discuss your negative experience with AP. I remember vividly the criticism you received on the previous forum for it not working: not staying with it long enough, experimenting with dosages and toughing it out. I'm glad you feel comfortable talking about it now.

Nikki: Acidophilus is a probiotic. There is nothing controversial about it or negative side effects. It gives you healthy bacteria to your gut healthy and aid with digestion and absorption. Everyone should consider taking it. It won't help lung fibrosis or stop the progression of scleroderma though.

I encourage you to consider all therapies that can stop fibrosis and reverse the progression of the disease and do something! There are pro's and con's to each. Do your research, keep asking questions and work with an expert in sclero to figure out what makes the most sense for your particular case.

Since you had a bad experience with tetracycline, you are smart to be guarded about AP. You mentioned lupus as well. Again, good cause for caution since antibiotics can cause drug induced lupus. All is cause for caution, NOT inaction. AP may or may not be for you. It is not your only option. There are other therapies that have had success with lung fibrosis. Please keep researching and consulting with your doc. Good luck, keep asking questions and keep us posted on what you discover.

Report post

I am hesitant to admit it here, but the truth is I have had bad experiences with two rheumatologists here in Montreal and they have completely soured me on the idea of being treated by a rheumatologist at all. I am being monitored only by my GP who has a lot of patients (and thus experience) with autoimmune diseases and since doing so I have seemed to stabilize - in other words in the last 7 or 8 years I have neither improved or deteriorated (which is ok by me).

Report post

I'm really sorry to hear that you don't have a good rheumatologist Nikki. It is good to know that you have a long standing relationship with your GP who has a lot of experience with autoimmune conditions though. And more importantly, that you have stabilized.

Thank goodness we have this site and internet access in general to learn about others experiences, treatments and progress being made in research. It makes it all the more important for us to openly share the good and bad experiences of our treatments.

Take care and keep asking good questions.

Report post

Just to add some information to Laurens post there are approximately forty drugs that may cause Drug Induced Lupis or DIL. Among them are anti inflamatories, thyroid meds, meds for heart disease, among others. For those interested in more information you might check this page from the Lupus foundation.

thttp://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutindividua lized.aspx?articleid=377&zoneid=18

From personal family experience I know that there is one med not on the list that also causes DIL. DIL usually goes away when the offending drug is stopped. That was our experience fortunately.

Interstingly AP is used to treat Lupus and as you know MANY of us are on anti inflamatories. In addition anti inflamatories are used to treat DIL. Kind of confusing. They note on the link provided that there appears to be no increased risk of DIL in people with SLE (Lupus). As to the incidence of DIL with mino I have read that the odds are about 1 in 10,000.

I would urge you to throughly research any treatment option you are considering and not just on these types of sites. Look at the meds concerned and go to the manufacturers sites and do lots of reading. There is no free lunch, all treatments have positives and negatives you just have to decide what treatment fits you the best and what risks you are comfortable with. While others can relate their experience with a particular treatment it may be very different from yours.

Report post

Not to get side tracked here or off topic but this thread is about herxing, not DIL (drug induced Lupus). If folks are interested in that ACKSD, we could begin another thread on that topic. Since you are experienced with AP and have had positive results from the therapy, I would encourage to share any comments or personal observations you have about herxing. Thanks Jeff.

Report post

Well you brought up the subject of lupus, DIL, and mino. I thought a little more specific info from the Lupus foundation would clarify the matter. If you want to begin a new thread - feel free.

As for my herxing in the begining I had rash like spots starting on my calves and in time the spots went away the itching stopped and new spots appeared on my torso. That process continued upward for a total of about six weeks and stopped at my jaw line. The most bothersome part was the itching but I had itchy skin before I began AP from the SD and the itching before was more serious. The rash went away and then on my one year anniversary of mino it began again but at a reduced level. Again six weeks later all cleared up. Last year on my second anniversary or close to it I had a very mild repeat. This year has been herx free. Perhaps the bugs are gone, yes I do believe in the infectious theory of AP. I think that the anniversary herx was perhaps brought on by the dry winter weather. I considered the whole thing just part of a healing process as overall I was feeling better all the time. I also experienced pain in my hips and knees in my second and third months of AP many attribute this to die off in the joints. Again this pain was nothing compared to the SD joint pain I had before treatment. I had been on anti inflamatories for the joint pain before AP and all they accomplished was aggravating a bout of GAVE but that should probably be another thread also. The hip and knee pain cleared up quickly and never returned. Many with SD do not herx at all. Herxing is often more associated with RA than SD. Many feel that true SD patients don't herx and that if you are DX with SD and herx in reality you may have a mixed connective tissue disease. I leave most of these symantics to others. This was my experience with what I feel was "herxing" and mine alone. Others results may vary.

Report post

That was incredibly helpful....thanks for sharing! As Nikki mentioned, the term herxing is thrown around loosely without much detail or explanation. I appreciate that you elaborated on your personal experience with it. We can all learn so much from each other!

Report post

I have been on AP for almost 11 years.During the time I was on Mino I had no herx at all.My doctor wisely told me that if I started AP at full dose that I might herx but if only taking 25mg 3 times a week nothing would happen.She was right,a few months later I raised it to 50mg then later to 75 and later to 100 but still only 3 times a week.She believes that with AP less is better than more.For several years it did not seem to be working at all but I was not getting any worse and the "pain level was down a wee bit.That is when we figured out that I had Celiac that had no symptoms.It took a good 18 months to correct the damage to the gut that celiac caused and then I was in remission in an other 18 months.
My doctor is the second best AP/holistic doctor in Canada and she always makes great sense.Her conclusion is that in most cases SD is caused by some sort of bacteria/virus/micoplasma getting into one venous system and spread throughout the body. If that is the case you may herx but not always.The other main causes are chemicals ,mostly chlorine,smoke(polution) and the mineral silica.Those people will not herx as there is no bacterial die off.
She has a very high rate of "cure"..not just remission.. and since I cannot go off a small amount of mino she knows that there is still something causing the problem,likely Lyme.Since there is only one good lab in the U.S and none in Canada that does lyme testing she has just put me on the AP protocol for Lyme.This usually takes a year or two to correct.One has to take heavy doses of several antibiotics to kill it off.Now I am herxing but the pain of it is nowhere near the pain I had for the SD and certainly does not slow me down.
Niki,unfortunately there are no AP doctors in the Montreal area and if you start AP you need a doctor who knows what he/she is doing and how to look for the underlying causes of the disease.I live just across the border in Ontario and my doctor is in Ottawa,she has a 2 year waiting list as her specialty is environmental diseases and these doctors are few and far between.These are diseases caused by mold,plastics,verathane,paint etc.These patients never herx.By the way, she blames chlorine for a very high rate of all kinds of diseases and if you ever go to her she will advise you toget rid of a lot of things in life that we like such as nice shampoo,perfume,fabric softener, most household cleaners, carpeting etc.You can't even go into her office if you have washed with soap that has a scent as other patients can go into anefalactic shock just from the smell that we don't even notice.

Report post

I had never heard of chlorine as being a cause of SD! I definitely believe that we are exposed to a ton of toxins these days that aggravate our bodies, but I had never heard the SD/Chlorine link. I realize this thread is about herxing which I have no experience with, but if you have any other info about chlorine and SD I would really appreciate knowing. I have always loved to swim and this past weekend I got very sick after hanging out at the indoor pool for several hours with my daughter and her friends. Feel free to email me separately or to start a new thread.
Thanks!

Report post

You have a pretty good scientific explanation of herxing above so no need to elaborate. I can just tell you my experience. I have been on AP for a year and a half. I am one of the few people with SD that unfortunately does experience herxing. I started out on a really low dose three times a week and even that was almost unbearable. I had to back down and start slower and eventually work my way up to the dose I am on now (100 mg twice a day). I am now doing relatively well and don't seem to be getting worse so I am really glad I persevered. In the beginning I felt like I got run over by a truck. Then it tapered off and I experienced migrating muscle and joint pain and headaches. I still get occasional herxing but nothing like at the start of AP. As I said, I am doing well and I am glad I stuck with it despite how bad I felt initially.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support the Scleroderma Foundation

Help the Scleroderma Foundation reach its goals and support people like yourself by making a donation today.

Donate to the Scleroderma Foundation

Discussion topics

From the Scleroderma Foundation

Community leaders