Fifteen Tips For Dealing With A Lyme Herx

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HERX
 
That funny sounding word was absolutely foreign to me until I began Lyme Disease treatments this past March.Otherwise known as the Herxheimer Reaction or a healing crisis. It is often experienced by those who are suffering from Lyme Disease, Tuberculosis and Syphilis among others. A herx is brought on by the death of spirochetes/bacteria and the endotoxins that are released into the body faster than the body can remove them. Which brings about a great increase in disease symptoms.  In short you feel like you are dying. Literally.
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My first experience with a Lyme herx reaction was one of complete terror. It truly did feel like death was imminent. The week after I was diagnosed with Lyme Disease, I started an intense treatment protocol prescribed by my Lyme doctor, that sent my body spiraling into what I would easily call a “Hellish” place. I do not say that lightly.

Now panic and freak out Lyme herx

Yes, this is exactly what I did, I panicked! Not a good idea!

I went from being simply exhausted, weak and frail, to feeling as if I might perish at any given moment. As if all it would take was a swift wind and I would be down for the count permanently. I now know that herxing can cause feelings of impending doom. Not pleasant, in fact very frightening.
The very first day that I started treatment, it felt like my throat was beginning to swell. (I now know this was a reaction to an antibiotic that I am now allergic to.) That very same afternoon, I experienced extreme dizziness/vertigo, heart palpitations/extreme tachycardia, my right arm went numb and I was so fatigued I could hardly sit up straight.

I had never heard of the word HERX before. Although, I did remember my doctor telling me, that I would feel much worse, before I  began to feel any better. So I chalked most of these things up to Lyme treatment. But, I was personally thinking,”If this is Lyme treatment I do not know if I will be able to continue.” I hated it. Unfortunately, I had only just begun!

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By day two of Lyme treatment, I was in the middle of a full blown Herxheimer reaction which would continue for over a week. I began to experience air hunger as I had never experienced it before. Feeling as if my very breath was being stolen from me second by second. My pain levels were sky high. I was basically to the point of rocking back and fourth because of the pain that wracked my body. Deep, throbbing pain in every joint and muscle. Like the worst flu in modern history.

My cognitive abilities vanished completely. I couldn’t keep a thought from one minute to the next. I had trouble even writing my name, much less in a straight line. I could barely swallow my throat was so swollen. Numbness crept over the left side of my face affecting my left eye. Hello, Bells Palsy. I had experienced it before. Here it was again. I was terrified.
By the third day I would add partial foot drop,  a very heavy, numb left leg and foot.  I began to worry, “Surely my foot drop hasn’t returned.” It had been absent for a long time. It was there lurking in the shadows, like a predator ready to pounce.

My blood pressure climbed higher and higher. Muscles I didn’t know I had began to twitch and tremor. I felt faint and close to just keeling over after supper that  third evening.

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Every horrible symptom I had ever experienced came creeping out of the darkest corners of my life.  I couldn’t begin to name them all. It was like I was living my own personal health nightmare.  I began to realize, something was not right.  I messaged my doctor. His response, “This is  most probably a herx. Drink lots of water. Rest, rest, rest, and pray it is alleviated quickly.” “Welcome to Lyme treatments,” I muttered to myself. He also changed one of my antibiotics and placed me on a corticosteroid to counteract the throat swelling.

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I would like to say that all went well and I came out on the other side the better for it. But, as is often the case with Lyme treatments, herxing is totally unpredictable. It can begin hours, days or even weeks after starting a new medication for Lyme treatment.

By the end of March I would find myself in the emergency room, due to another herx. One so bad, that I thought I was having a heart attack. A heart attack that ended up being aggravated GERD causing severe esophageal spasms, combined with costochondritis. (An inflammation of the cartilage that connects a rib to the breastbone.)

I did take my doctor’s advice, but I have learned some coping strategies of my own along the way. Things that have helped me through many “Hellish,” experiences during the past five months. I wanted to share them with others, in hopes that they might be a help to someone else. Someone who might be feeling scared and alone in this Lyme journey.I keep a daily journal of my Lyme treatment journey. This makes it easier for me to look back and see what helped at different points in my treatment. I can also see if I have experienced any improvements, no matter how small. It helps me to remember…to reflect…to count my blessings. Even a small light at the end of a dark tunnel is encouraging.

Coping tips for Lyme herxing

 

The following are ways that I have helped myself through many a  herx and even severe flares in the recent past. The best advice I can give is hydrate, hydrate, hydrate…detox, detox, detox. Oh, and pray earnestly that it is a “quick” herx experience, soon over.
**Now, I want to include here a disclaimer, that I am not a doctor. These are simply things that have helped me. Please seek the advice of a qualified health care professional before self treating. **
  • My top go to self help tool during a herx or even a flare is a tea made from a tablespoon (or two) of Bragg’s Apple Cider Vinegar and honey. This is a detoxification tea. I put a tablespoon of the apple cider vinegar and a tablespoon of honey into a mug of hot water, stir and sip slowly. This has become like a security blanket for me. It calms me. If I am herxing or flaring, you can bet that I have a mug of this tea nearby.
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  • An Epsom Salt and baking soda detox bath is the second best way I have found that helps with a herx reaction. It helps to draw the toxins out of your system. I love the lavender scented epsom salts. While heat of any kind exhausts me, I still find the bath helps. Even though afterwards, I generally have to go to bed and rest. I love to add lavender scented essential oils into the water as well.
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  • Extra Rest. Rest, Rest, Rest and more REST. Easier said than done, but completely necessary to surviving Lyme treatment.
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  • Lemon water and also just  plain water. When lemon is added to the water, it helps the liver to cleanse. Keeping hydrated is extremely important in helping the body rid itself of toxins. I keep a bottle or cup of water by my side at all  times.
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  • Tumeric/Curcumin capsules for pain. I take four a day. It helps mellow my pain levels, so that they are at least manageable.
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  • Dandelion Tea and Dandelion Capsules. Both of these help with detoxification and have a calming effect for me.
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  • Probiotic. To help the gut heal. High potency probiotic is vital to restoring gut health.
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  • Stop Pain for pain relief. I have found this muscle rub to be very effective, even if it is somewhat medicinal smelling. It is a roll on, so that you do not have to touch it. Which is another feature I love about this product. It dries quickly and does not stain clothing.
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  • Keeping a positive outlook is an important part of managing a herx reaction. As your mental and spiritual health are just as important as your physical health. Lyme plays with your psyche. It can cause depression and anxiety. I love to keep encouraging books of quotations and a little flip calendar with scripture verses on my night table.

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  • It is best, at least as much as is humanly possible to avoid stress and triggers of stress. I try to keep my calendar as clear as possible. The less things I commit to, the less I have to renege and say “No,” to a previous “Maybe” or “Yes.” I don’t know about you, but saying “No,” stresses me out.
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  • Magnesium Oil is a natural wonder. I rub it on the backs of my legs and it absorbs quickly. It is not greasy and helps control my pain numbers naturally. I wouldn’t be without it.

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  • Something fairly new that I have incorporated into my detoxification routine is a product called Drainage Tone by Energetix. This was recommended to me by a friend and it works! I feel so much better when I take this. It helps aid the body in detoxification.

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  • I have severe IBS problems that accompany my other myraid of Lyme symptoms. My doctor recommended I begin to take Colostrum Powder. I have found that this product soothes my aching gut and helps me to digest better. It even calms my nausea. I wouldn’t be without it!

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  • Green Barley Grass Tablets are a staple of my protocol. They are a simple green food product that are grown naturally in Amish countryside of Pennsylvania. This is a gluten free product. So do not be fooled by the name barley. I order mine from Green Supreme online. This is one product that I will continue to take for the rest of my life. It has been on the market for over 25 years. It helps detoxify and heal the body on a cellular level. I would recommend this product to anyone regardless of age or health. It has been a help to me in so many ways. I find that it soothes my IBS symptoms in a way no other product has done.
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  • Surround yourself with friends and family. You need all the support and help you can get during a herx or flare. I am so thankful to have a circle of family and friends who care. Who make a concerted effort to understand and are supportive. I can’t imagine facing life without them. I am slowly learning to accept help when I need it. This has been a hard thing for me, as I am a genuine “Do-it-yourselfer.” I like getting things done and doing them myself. But, the past years have made it more and more difficult for me to continue that life style. Welcome the help of your loved ones. It may be the key to a happier and healthier you.
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I hope some of these things can be a help to you like they have to me. I still have a long way to travel on this journey to wellness. I know that, but, I can see the light at the end of the proverbial tunnel and it looks gorgeous on the other side. Keep encouraged. If you would like to read more about my journey and herxing you can visit this blog post Herxing Hard and Biting Into Ally Hilfiger, where I write about some of my treatments and reading Ally Hilfiger’s new book about Lyme Disease Bite Me.

Wishing you health and happiness,
Valerie

11 Responses to Fifteen Tips For Dealing With A Lyme Herx

  1. Thanks for putting this together! I definitely agree with some of these–mainly water, probiotics, epsom salts, and REST. I am a big fan of tea and the comfort of soothing (lavender) scented heating wraps for my neck since it is constantly stiff…especially during a Herx. I used to try Burbur and Pinella drops but never found that much relief and quit using them after I ran out. I heard a lot of positive reviews in others, though; you just never know what works for other people. Also…costochondritis is SO BAD. I had it as a freshman in college and had to tell a professor: "Uh…I think I'm having a heart attack." Eek!

  2. Valerie says:

    Dear Chelsea,
    Thank you! I'm so sorry that you know about costochondritis. IT IS HORRIBLE. I've never heard of Burbur and Pinella. I will have to check those out. Like you said, you never know what works! I'm open to suggestions. I am starting a new protocol this week. I dread the herx that I am certain is headed my way. I'm going to have to get me a heated wrap for my neck, that sounds fantastic. I had one a long time ago…I need a new one. Thanks for the visit and your kind comment. Blessings, Valerie

  3. Kami Lingren says:

    These are some great suggestions, Valerie! Lyme herxes are no joke. I remember my first few months feeling like one huge, long, drawn-out blurred period of time. Herxing felt constant and it was awful. I was not good at detoxing and I now wish I had all of my current ammo under my belt then! These ideas will be so helpful for those following you and fighting Lyme!

  4. Valerie says:

    Dear Kami,
    Thank you so much for your kind comment. I still feel like I am in the middle of that long drawn-out blurred period of time. I know what you mean about the herx feeling constant. I hope to see more improvement soon. I get too relaxed about detoxing myself and then I pay for it in major ways. I appreciate your blog posts so much and your encouragement.
    Blessings,
    Valerie

  5. Thank you for this well written post! You have such a wonderful way of describing your journey, while offering helpful nuggets of information along the way. Your description of beginning treatment fits my experience almost to a T! Oh my goodness do I wish I knew then what I know now! I wish I would have had your blog available to me 15 years ago – ha! The trial and error I have made my way through over the years could fill volumes of journals. Only wishing I would have tracked my journey from the beginning. You are inspiring future blatherings from me! Thank you for sharing your path with us. Terry 💚🙏🏼💚

  6. Valerie says:

    Dear Terry,
    Thank you so much for your kind comments. It means so much to know that what I share might be of a help to someone else in some small way. I am still in the newbie phase of all of this! I have learned a lot though and hope that I will eventually find my way to a cure. Looking forward to reading more of your journey! Blessings, Valerie

  7. Sue Jackson says:

    Excellent post with some great tips. My son has Lyme, babesia & bartonella & he Herxes badly – he is SO sensitive to treatments! Years ago, he switched to an all-herba protocol (both of us now have chronic yeast overgrowth requiring Rx antifungals all the time, after years on abx for Lyme), but even with that, after several years, he can still tolerate only 1 drop a day (at his best) – standard dose is 30 drops a day!

    And that is our #1 strategy for dealing with Herxes – adjusting the dose of whatever treatment is causing the Herx. Our LLMD often reminds us that you gain nothing by just suffering through a bad Herx because it means your body can’t keep up with the detox, so the treatment can’t do its thing. The key is finding the sweet spot – the dose at which you have some mild Herx symptoms but can still function – that way, you can live your life AND make more progress in your treatment. For instance, when my son first started doxy, he could only tolerate 100 mg every 3 days! It took some trial & error to figure that out, and over the course of the next few years, he gradually was able to increase to a normal dose.

    My son is home from college for a month right now, hoping to get in better shape and increase his dose, and your tips are going to come in handy. Many of them we already take – but clearly not at high enough doses (like dandelion and turmeric), so I passed your tips onto my son last night and am ordering extra supplements for him to use when the Herx hits.

    Thank you for a very informative post!!

    Sue

    Living with ME/CFS

    PS We never noticed much difference with Parsely & Burbur drops either.

    • ValerieB says:

      Dear Sue,
      I am so glad that the post was helpful. I totally understand what you mean about hitting the sweet spot. I still have not totally figured out what mine is! I too am extremely sensitive to treatments of any kind. I recently switched to an all homeopathic protocol to treat my babesia. (I also have bartonella)

      Treatments have made me SO sick. I think the drainage tone, tumeric and lots of water have been my biggest saving grace and of course epsom salt baths.

      I wish your son all the best and hope that he can obtain a level of healing. With Lyme it seems like you take two steps forward and twenty five backwards. It can get so frustrating. Bless his heart, going to college! I cannot imagine trying to do something like that with Lyme.

      I am also taking an RX for yeast overgrowth. It is no fun! I think the yeast die off reactions are just as bad as the Lyme die off.

      Keep encouraged and thank you so much for your kind and encouraging comment.
      Blessings,
      Valerie

  8. Jackie says:

    Thank you for sharing, I have had most of thes herx symptoms and had idea until now that’s what they were. I only tested abnormal for one band of lymes, my doctor told me not to worry, but my naturalpath feels much differently. Thanks again for sharing, I can now feel like I’m not the only one w these symptoms

  9. Candace says:

    Hello everyone. I was bitten by a tick 4 years ago, and got a bullseye rash. I immediately went to the doctors and was tested for Lyme. The test came out negative. But I knew I had lyme because I was sick. They prescribed me 4 weeks of Doxy. I was very sick with vertigo, and joint pains, nausea and numbing and tingling in in my hands and feet. After that time I tried to find a Lyme literate doctor …. which , apparently is like trying to find 1 blue fish in an ocean of blue fish. I found 1 in Pennsylvania who doesn’t take insurance. We went there and paid $900.00 dollars f9r treatment which consisted of more Doxy and Flagyll. I was on antibiotics for 4 months. I was suffering from panic attacks, and since then my anxiety has been almost debilitating. I have a regular doctor who is very understanding, but isn’t really lyme literate. O have been to an infectious disease doctor…who wasn’t any help. I haven’t had treatment of any sort in a couple of years. I am still so tired all the time. I can’t seem to go a day without taking a nap at some point, and no one in my life really understands what is going on. I don’t either. They think im just being lazy. I was looking for a support group, or something, and a doctor who knows how to help me. I still have joint pains and tingling and numbness sometimes, but it really seems to act up when my anxiety gets out of control. I am in Maryland, and was wondering if anyone knows of somewhere I can go for help. I feel like I’m all alone in this, and it’s ruining my life. My vision is also strange a lot of the time. Please help me find somewhere to go, if you know of any where.
    Thanks,
    Candace

    • Amy says:

      Hi candance. I just read your post. Not sure if you’ve found a doctor to help yet, but I just saw one in Lexington VA, first one in two years that’s been able to help me. I’ve felt exactly how you describe and was desperate. I’ve been on Doxy for four months now and just Monday switched to Minicycline and Rifampin. I immediately started to Herx. I’m more encouraged now than I’ve ever been since Herxing is a sign that something is working, finally. My doc is not covered by insurance but was referred to me by a friend who has Lyme, a rather wealthy friend, that’s been literally traveling the US to find someone to help. She’s the only doc that has helped him and his father, who also has Lyme. Her name is Katherine Harbor in Lexington VA. It’ll be a drive for you as well (I’m in Fredericksburg VA) but Look her up. Good luck on your journey. I hope you’re on the road to recovery. Amy

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