Herxing — Another Weird Part of Lyme

Lyme-Disease wordleI promised you in my last post that I’d keep you updated on my second journey of battling Lyme disease. In my last post, I said I had debilitating fatigue, muscle aches/weakness, nausea, and some anxiety for about 3 days. Those symptoms are the Lyme disease reacting to the antibiotics, the disease fighting back against these invaders. This reaction is a positive sign that the antibiotics are working and is known as the Jarish-Herxheimer reaction. Commonly this name is abbreviated to herxheimer, “herxing,” or simply “herx.”

What is known about Lyme disease herxheimers are based heavily on the reactions seen in syphilis. This is due to the fact both diseases are caused by a bacteria known as a spirochete, the former being Treponema pallidum, the latter Borrelia burgdoferi (Bb). However the herxheimer reactions in Lyme disease are not identical to those seen in syphilis. Bet you never thought you’d see a discussion of syphilis with one on Lyme Disease!

A herxheimer occurs because the Bb bacteria, under attack from the antibiotics, start to break up and die, releasing toxins and other harmful debris as they do so. This, in turn, causes the body’s immune system to temporarily go into overdrive in order to cope with the abrupt deluge of toxins and debris.

A herxheimer can last from a few days to two weeks or more, depending on how disseminated the Bb bacteria is in the body. The greater the dissemination, generally the longer a Herxheimer will last. During this time, in addition to the temporary worsening of previous Lyme symptoms, one may also experience chills, low-grade fever, headache, increased joint or muscle pain, nausea, a drop in blood pressure levels, rash, and hives.

In some patients they occur only once or twice (if at all) and with others continue throughout the course of treatment, usually lessening in severity. They can occur and are more often described in cycles (example: every 4 weeks) and have been reported to last from days to weeks. The good news is that the herxheimer is thought to indicate that the antibiotics are indeed working and that following each worsening may bring about more improvement.

My Sofa Recliner & Desk

My Sofa Recliner & Desk

Well, I am on my second herxheimer reaction and am typing this from what is becoming a familiar place to me…our sofa recliner, wrapped in heat wraps. For a woman going through heat flashes, this is NOT good (lol)! The first time I herxed, I missed 1 full day of work and a few hours the next morning. On this herxing episode, I will be missing 3 days. The frustrating part is you never know when it’s coming. I felt fine all day Monday & Tuesday, and then Tuesday evening, I began to get body aches, a slight fever, and fatigue, and I knew I was beginning another herxing episode.

So what is God teaching me through these herxheimer episodes? First, I’m not in control; God is (which is a good thing!). Second, it’s easy  to get disappointed, helpless, needy, and self-centered. To combat this, I ask God to show me someone who needs encouragement and I call, text, email, or actually put a card in the mail (how novel, huh?). Since I am an extrovert, I also need to talk to people, so I pick up the phone and call someone. Third, because this disease and some other weird ailments I’ve had are hard for others to understand, God is allowing me to share in the sufferings of Christ. To know what it’s like to be misunderstood, to know what it’s like to be in pain, to know what loneliness.

The beauty in snow

The beauty in snow

But God also keeps me still so I can hear His voice, know there’s hope, and enjoy the beauty of His creation.

Lyme Disease…the Battle Begins Again

“Wow, that just doesn’t make sense,” I said to the ENT doctor. He explained how I had some structural problems in my nose that are probably the cause of some severe sinus pain I’ve been experiencing for the past 6 months. It didn’t make sense because I’ve never had sinus problems in my life, and now, all of sudden, I was having sinus pain so bad, I was calling off work and sometimes taking Vicodin for the pain.

Over the past year, I also began to have severe pain in my right hip. After several visits to the hip orthopedic doctor, several injections to the hip joint, and 8 weeks of physical therapy, an MRI showed I had several structural problems and a labral tear. I was referred to a doctor who does hip arthroscopy and another who does hip replacement. Both said I didn’t actually have a labral tear, but that the tissue attaching to my hip joint was deteriorating, and that can’t be fixed with surgery. They both said it really didn’t make sense for a woman of my age who has been physically active her whole life. Hmmm….something else that doesn’t make sense.

Could my Lyme disease be active again? I didn’t really know if I wanted the answer to that question, but after a friend also asked me the question, I knew I had to pursue it. I saw my Lyme doctor on January 28 and we discussed what I described above, along with some short-term memory issues I was having, two surgeries within a year, not being able to exercise in a year, etc. He said he didn’t think it was my Lyme, but there was one test that would tell us for sure, CD57.

His office drew the blood that day, and 3 days later called to tell me that my Lyme was active again. Tears welled up in my eyes. I didn’t really think this would return. Even the doctor thought that. I don’t want to go through this treatment again because I know I’ll get worse before I get better. God, give me strength.

So the battle begins….again. I’m on two oral antibiotics, Doxycycline and Ceftin, and they are kicking my butt! I have debilitating fatigue, muscle aches/weakness, nausea, and some anxiety. Those symptoms are the Lyme disease reacting to the antibiotics, the disease fighting back against these invaders. Fortunately, this should only last a few days, and then level off.  I am on day 2 of these symptoms and off work. My prayer is that God will give me strength to return to work tomorrow (and beyond) and be able to be productive. In a few weeks, I return to the doctor’s office to get an infusion of glutathione to boost my immune system.

I will be chronicling my journey through this battle in this blog, with the hope that I can educate and help others who may be suffering with Lyme and may not even know it, or may not know where to turn for help. I will be explaining what the CD57 test is, and why it’s a good marker for Lyme. I will be sharing resources, both online and in your community. I will share what exercise works and what doesn’t.

But most of all, I want to share hope. Not only for you “Lymies” out there (Lymies are those with Lyme disease), but for those who struggle daily with chronic illness. Daily I cling to this verse from Psalm 16:8, “I keep my eyes always on the Lord.With him at my right hand, I will not be shaken.”

Okay, I do feel physically “shaken” today and there will be other days I “feel” the same, but I have a peace in the process, knowing the Lord is walking through this with me and He will not leave me.