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.  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 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 17-year old son 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, our dietician, various articles, and other people:
  • Burbur and parsley drops (the link is to the cheapest source I could find)
  • Chlorella (our dietician recommends King Chlorella brand)
  • Milk thistle (my son 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 (see UPDATE below)
  • Water and lemon juice (helps the body to become more alkaline)
  • Epsom salt 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)
  • Heat treatments, like sauna and hot tubs - 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.
None of these things helped our son very much at first (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 infection(s). With this in mind, I had yet another phone consultation with our Lyme doctor this week, and we decided on a new plan. Even at a very small dose, he 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 (normal dose is 2 pills each day).  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 antiviral treatment for ME/CFS.  I'd love to hear your experiences, too, and if you know of any other ways to lessen Herx reactions.

UPDATE 11/9/17:
I wrote this post five years ago, and my son is still struggling with Herx reactions and is still very sensitive to even small doses to treat his three tick infections...though he has made tremendous progress in that time and can now live a much more active, full life. We have learned some more things in the past five years for managing Herx reactions:
  1. Adjust the Dose. Your first line of defense 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 years ago and hasn't had any antibiotics for tick infections in over 4 years now, 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), 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. In this way, you will make slow but steady progress and still be able to function.
  2. Help the Liver and Increase Anti-Inflammatories. We read about these two supplements on a blog post at Lilac and Lyme, and they have helped my son considerably. He takes extra circumin (the active ingredient in turmeric, a potent anti-inflammatory - our dietician recommended Meriva brand) and dandelion root when his Herx symptoms flare up. He was already taking both of these for ME/CFS (me, too), but now he has an extra bottle of each and takes 2-6 extra capsules of each on days when his joint pain or other Lyme symptoms get bad. He says these two extras have really helped! NOTE: It is best for people with ME/CFS not to 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).
  3. 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!):
This combined approach, with the new treatments combined with the older ones, keeps my son functioning well most days.

What works best for you for Herx reactions?


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15 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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