Friday, October 28, 2011

Managing a Herx Reaction

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 antivirals (and sometimes, antifungals).  It's called a Herx reaction, and, as we have seen with our son, it can be completely incapacitating.

What 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 spiral-shaped 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 oldest son has been enduring them for the entire seven years of his treatment for tick infections, to date (though he is much, much better these days), and my own Lyme disease rears its ugly head every few years.  Treating babesia and bartonella (two other tick-borne infections that he has as well as Lyme) can also cause Herx reactions, and the immune dysfunction of ME/CFS (which we both have) just makes it all that much worse.  That blog post I quoted from above says that Herx reactions can last days or weeks, but our son  - and many others with both ME/CFS and Lyme - has experienced a severe worsening of symptoms that lasted many months initially and still pops up if he tries to increase his treatment or make other changes, even seven years later.

Ways to Lessen a Herx Reaction
He has been so totally disabled by Herx reactions at times (and I have been with my latest relapse of Lyme) that we have become desperate to find some way to help, so I've done a lot of research and have talked to a lot of people.  Here is a list of some remedies to lessen Herx reactions, from our doctor, our dietician, various articles and experts, and other people. We use most of these:
  • Adjust Dose of Treatment - whether you are on antibiotics or an herbal protocol for tick infections or antivirals or antifungals for ME/CFS, your first line of defense when you Herx badly is to adjust the dose of your treatment. Herxing is a sign that your body can't detox fast enough, so if a Herx is severe or lasts more than a few days, you should always back off on the dose or even take a bit of time off and then restart at a lower dose - see below for details.
  • Burbur, parsley, and pinella drops or a burbur-pinella combination (the links are to the cheapest source I could find) - you can use 8-10 drops of each in about 4 oz. of water, wait one minute, and drink. Do this every 2 hours if needed. Some sources say that you can take these every 15 minutes and they will eliminate your Herx within an hour! We'll have to try this - we've never taken that much before.
  • Chlorella (our dietician recommends Allergy Research Group's King Chlorella) - 6-10 of the tiny green pills, up to twice daily, but it's best to start with a low dose and gradually build up. Too much chlorella can cause stomach cramp, nausea, and diarrhea, especially in the first two weeks (as I discovered myself!). But it seems to help a lot, so I will continue to use it but will be careful with dosing.
  • Milk thistle - my son and I 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. Take 1 capsule 2-3 times daily.
  • Dandelion root - this is another supplement to help improve liver function, but you should only take 1-2 capsules a day. People with ME/CFS should not 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).
  • Curcumin (our dietician recommends Meriva Soy Free and we like the 500 mg capsules though it also comes in a lower dose of 250 mg) - this has been life-changing for our son! Our Lyme doctor and dietician said you really can't take too much - it is a potent anti-inflammatory with no negative effects - so our son takes 1-2 of the 500 mg pills up to 3 times a day (as have I recently). As an anti-inflammatory, it is especially helpful for joint pain, though it has many other benefits, too, helping cardiac system, brain, and more. Bonus: Many studies have shown curcumin to boost mood and help antidepressants to be more effective in those with depression!
  • Boswellia - this is a new one for us, another herbal supplement with anti-inflammatory properties (so, again, great for joint pain). Lyme specialists recommend 1-2 capsules up to 3 times a day, before meals. We've only just recently starting taking it, but both of us think it is helping.
  • Glutathione - this is an essential nutrient in our bodies that helps with immune function, detox, the nervous system, energy production, and much more. EVERYONE with ME/CFS or Lyme should be taking glutathione and/or working to increase their body's production of it, but it's especially important for Herxing. Most effective are glutathione intramuscular injections or nasal spray. Next best is liposomal glutathione. This post on increasing glutathione explains all the different forms and how to get them, as well as glutathione precursors and ways to help your body make more on its own.
  • Extra soluble fiber (see Help Eliminate Toxins below).
  • AI#3 and Puerarin - these Herx herbal supplements are a part of the Zhang protocol for tick infections, which my son and I are just about to switch to. Whether you are on the full protocol or not, you can use these products for Herxing, taking 1 capsule of the AI#3 3-4 times a day, before meals for joint pain and/or 1 capsule 3 times a day of the Puerarin for fever, muscle aches, or Raynaud's. In my searches, I have found 3 main websites that sell the Zhang protocol: Dr. Ron's, Darin Ingels ND (I learned of the Zhang protocol from his book), and HepaHealth.
  • Water (cold or hot) with lemon juice - helps the body to become more alkaline, which is best for the immune system and the gastrointestinal system.
  • Alka-Seltzer Gold - also helps to make the body more alkaline - can be used on its own or with other supplements (see Help Eliminate Toxins below).
  • Dry Brushing - this is something that became trendy recently in beauty magazines but that can help with detox. You use a brush on your dry skin (lots of articles & videos online for how to do this and what direction to brush, etc.), before a shower or bath (see caution below) to stimulate the lymphatic system to help your body detox more effectively. I just ordered the brush at the link (with a removable handle), so I will let you know how it goes!
  • Epsom salt baths or foot 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. Some people with tick infections (even without ME/CFS) also have OI.
  • Heat treatments, like sauna and hot tubs, which help your body get rid of toxins - 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. 
  • 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!):
Adjust the Dose
None of these things helped our son very much at first.  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 infection(s). With this in mind, you need to find the optimal dose where you ARE making progress but your body can detox properly and you are not incapacitated.

Even at a low dose, our son was still severely ill, so we had to go VERY slowly and gradually with the antibiotics in those early years.  With doxycycline, he went completely off of it until the Herx symptoms cleared and he started to feel better (for him, 5-7 days), and then he began again, taking just 1 pill (100 mg) every 3 days (normal dose is 2 pills each day).  Once he was able to tolerate that fairly well, we increased it to one pill every two days, and so on. It took him over 18 months to work up to a full dose.

So, your first line of defense with a severe Herx lasting more than a few days 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 about four years ago for his tick infections, 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 - he started with just 2 drops each week), 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. Many Lyme specialists say to only increase the dose when you are feeling good - if you are still feeling bad, it's a sign that your body is not yet keeping up with detox. In this way, you will make slow but steady progress and still be able to function.
My son still over-reacts to his treatment for tick infections and still Herxes badly sometimes, and my own Lyme disease has popped back up after several years of remission, so my attention has again been turned to managing a Herx reaction, as I am Herxing much worse this time than previously. I recently discovered that we can take many of the Herx supplements far more often than we thought, so I have updated all of the information in this post and included some dosage guidelines for each item, as well as adding a few more to the list. Hope this helps!

What works best for you for Herx reactions?

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17 comments:

  1. Hi Sue
    I am sorry that Jamie is one of the many who suffer so much from herxing. Ijust heard today on the ILADS conference in Toronto that one of the reasons the pain gets bad with herxing is due to the insulation surrounding nerves is damaged or gone due to the bacteria itself...so toxins causes more pain. This was not an anser for me today as far as helping with my own pain, but was helpful to hear an explanation. Joel gets less pain with die off and more exhaustion.
    I really hope the tiny doses reduces the herxing for him. I know that for me the pain can be dibilitating. As far as the herxing, I have shared with you what I know...which is not very helpful for you due to Jamie also having CFIDS. Joel as that too but does not have OI so can be in the infared sauna without issues. Of course drinking tons of water is necessary....and I belive the hot water and lemon is for getting the body in an alkaline state, reducing the acidity in the body. I know many who drink lemon water all day. i cannot tolerate lemons, myself so don't know if it would work. I also used something called Tri-salts when I was herxing so bad in June and July which also causes the brain/body to be in an alkaline state.
    Will be keeping Jamie in prayer.

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  2. If you are trying to produce an alkaline state then try a detox bath with baking soda instead of the epsom salts. The magnesium and sulfer in epsom salts are absorbed by the body so I'm not sure how good it is as a detoxifier (removal of material from the body through the skin). I've been using baking soda baths in the hottest water I could tolerate so that I was inducing a sweat. Yes, I was light headed afterwards but I felt slightly better.

    I've also been drinking bentonite clay and activated charcoal but check with your doc on the timing of this stuff with the meds. They can bind with meds, supplements, etc. That being said I found them very useful for reducing nausea from the herx from the glutathione IVs. BTW, clay is an alkalizing agent.

    I found this article interesting but with no references it is hard to tell the source/validity of the information.
    http://www.yolkskefirandgristle.com/2011/10/03/detox-baths/

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  3. http://www.yolkskefirandgristle.com/2011/10/28/playing-in-the-mud/

    About detox mudbaths.

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    1. Hello Baffled - Did you happen to keep a digital copy of those articles on detox baths? The links and entire site seems to be offline. My client is in dire need as she goes through her Herx after starting methylfolate. Got great liver support - but baths are a critical pathway for elimination; would love to see what others are doing. Best, Blythe at CommunityHerbalist.com

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    2. Blythe - I passed your question onto Baffled (a friend of mine). Just be cautious using baths for someone with CFS because of OI - have to make sure the water is no hotter than body temp or it can trigger even worse symptoms.

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  4. Thank you both very much for the suggestions. I'd never heard this thing about making the body alkaline before - do either of you know of any resources online that I could read? I will check my usual Lyme sources today.

    And I'm confused how lemon juice could make your body more alkaline because lemon juice is an acid...though I have heard this advice before.

    baffled - I don't know if I'd chance the hot bath with Jamie - he gets REALLY sick in hot water - went in a hot tub at a middle school pool party once and we had to go pick him up.

    All definitely worth looking into - thanks!

    Sue

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  5. I searched both the ILADS guidelines and Burrascano's Guidelines but neither say anything about acidic or alkaline states. Still looking...

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  6. OK, I found this article but it doesn't seem very authoritative - I will definitely call our Lyme doc on Monday to talk to him. Thanks!

    http://healthyreferral.com/2010/09/the-alkaline-brain-lyme-borrelia-induced-hyper-ammonemia/

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  7. If you do the mud bath version you don't need hot water. You use the clay to absorb the toxins rather than sweating it out. The bath itself is just to rinse off the clay.

    It is amazing how much stuff passes back and forth through the skin barrier. I was reading about epsom salt detox yesterday and it is fascinating body chemistry at work.

    If you are interested read the "Dirt Cheap Solution" section of this article on heavy metal toxicity (the article itself is very long): http://www.westonaprice.org/environmental-toxins/mad-as-a-hatter

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  8. It IS fascinatng, though I might have trouble convincing my 17-year old son to take a mud bath!! We'll see...

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  9. I know it must be overwhelming dealing with one thing after enough Sue but, amidst that, you have worked out what sounds a very rational plan. Glad Jamie's managing to function a little again and hope it all goes well.

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  10. Anonymous7:43 AM

    Hi im following the new and very promising results of using a lymphcancer med. in Norway for CFS (im from Sweden). They got some funding from a foundation for finding a biological trace for CFS. So if we are lucky we may finally find some proof on CFS existence as a physicall illness.

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  11. Anon -

    Yes, wasn't that study exciting?? I wrote a blog post about it last week:

    http://livewithcfs.blogspot.com/2011/10/cancer-drug-may-help-mecfs-patients.html

    It sounds like a promising lead for treatment, but we don't need that study to prove CFS exists - there are plenty of scientific studies that have already done that - the problem is that there are still so many doctors who don't keep up with the latest research and still have outdated ideas about CFS.

    Dr. Nancy Klimas wrote an excellent paper a couple of years ago, detailing all the studies that show biological abnormalities in CFS, especially in the immune and endocrine systems. If you want to see it, just e-mail me (click on my profile and use the E-mail button).

    Thanks for stopping by and taking the time to comment!

    Sue

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  12. Anonymous12:04 PM

    I dealt with herxheimer reactions off and on for 11 years while I was on abx treatment for LD and co's. I quit doing any antibiotic treatments 6 years ago due to systemic severe candida and I could not bear the herx reactions any longer. I have neuro LD bad and the last round of treatment mentally was unbearable. In September of this 2017 year I come down with shingles and than my EBV virus went through the roof so my DR put me on anti viral medicine that is hitting my brain like a herx did. At first I did not think or acknowledge it could be a herx - until this morning when I came out of a nightmare in a panic. My head is buzzing loudly and I feel worse. I did a search and fond your blog which has been a tremendous source of good information and a comfort. I was not sure one could actually herx while on an antiviral med, but it makes sense. I remember my LLMD told me years ago to back off on abx while herxing and/or pulse until the body can tolerate the medicine.. Now I will begin doing that with Famvar. Its good that its hitting the virus, but what good is it really if I'm going to be in much worse shape from a nasty herx. Thank you for posting!

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    1. So sorry to hear of all you've been through! My son has Lyme plus 2 co-infections, and he also had to quit abx due to severe yeast overgrowth (plus they trashed his mitochondria after years on them). He switched to an all-herbal protocol (he uses Byron White but there are others) which has proven to be very potent with none of the side effects! You might want to ask your LLMD about that, if you haven;t completely gotten rid of the tick infections yet - there are plenty of alternatives!

      Yes, absolutely, antivirals can also cause a Herx and it does sound like that it what you are dealing with. Also, did you know that Lyme causes viruses to reactivate? So that could be why your EBV flared up & caused shingles. Glad to hear your doctor is on top of it and knew to treat with antivirals. My son had shingles a few years ago, and it was very painful. So, yes, back to square one, just like with abx for Lyme! Take a few days off entirely until you feel better, then restart the Famvir at a much lower dose - even just a half pill every other day to start, until you can tolerate a bit more - slow and steady is key! Good luck!!

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  13. Can you share a site that gives a good overview of Lyme & other tick infections?

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    1. Sure, Liz - I hope you don't mind if I start with my own! This basic overview of tick infections was written specifically for those with ME/CFS and fibro, addressing the most common questions that come up. More info on tick infections and why everyone with these illnesses should rule them out - the urgency is that these infections can cause permanent neurological damage when left untreated, so you want to find out immediately if there are any tick infections behind the scenes.
      http://livewithcfs.blogspot.com/2014/06/why-everyone-with-mecfs-or-fm-should-be.html

      From that blog post, there are links to other resources as well. ILADS is the best one:

      https://www.ilads.org/

      Hope that helps - let me know if you have any other questions after reading the post.

      Sue

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