Home Forums General Discussion Herx or doxycycline reaction

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  • #461810
    kkim
    Participant

    Hi,

    I’m kind of new to all if this. I was diagnosed with lupus and secondary fibromyalgia in Aug. 2017. It was a fairly quick diagnosis because I was only sick for about 4 months prior. My blood work showed positive ANA and low c3 c4 levels but nothing else was positive. I’ve been on plaquenil ever since but have not seen much improvement. There are good days and bad days but it’s hard for me to live a normal life. I had to quit my job about a year ago when my symptoms started suddenly. I have tried prednisone and I couldn’t bare side effects – night sweats, heart palpitation, frequent urination…. and more. It’s the worst drug for me.

    Around the time I was getting lupus diagnosis, I got tested for lyme by MDLabatories? and it came back positive. Igm positive but Igg negative. This test was done by my Naturopath but none of my medical doctors thought that I had lyme disease (said it was a false positive).
    I’ve never seen a tick or bullseye rash so I believed my med doctors. If I was infected it should be at least 4 years ago since I lived past 3 years in a country where there is no lyme. I moved back to BC Canada due to worsening health issues and lead to lupus diagnosis.

    I continued with my lupus and fibro treatment for about 8 months. I improved a little – being painfully bedridden to having some good days with few hours of activity. My symptoms were somewhat stabilized – muscle pain, all over body ache, fatigue.. and minor nerve pains.

    Recently I met with my naturopath again to try antibiotics – doxycycline 100mg two times a day plus plaquenil which I was already taking. I just wanted to scratch lyme disease out of my brain so I can move on. However starting antibiotics took me by a surprise. Few hours after first dose of doxy my nerve pain intensified so much. My feet were burning, buzzing and tingling. It subsided within few hours but did not disappear completely.
    I thouht it was herx reaction at first (was warned by ND) but this happened every time I took a pill. On the second day, my old symptoms that were long gone came back. Mostly nerve pains, tingling, pins& needles and itching.

    I called my ND and he said to stop med for three days and start with only one 100mg doxy a day. I’ve been off of my pills for two days and I still have slight pins&needles, itching, burning sensation..
    I’m scared to take the next pill. I’ve read a lot about herx reaction and it seems like they are usually delayed reaction (48 hrs after new treatment). Mine is couple hours after taking doxycycline and happens every time.
    Also I read antibiotics can cause lupus or fibro flares.

    If it’s a herx reaction I should suck it up and endure the pain (it’s the worst pain..) but I’m worried that it might some type of immune reaction.

    Please let me know your thoughts
    Thank you in advance.

    #461816
    PhilC
    Participant

    Hi,

    Based on my own experience, I believe that your reaction to doxy is normal and falls into the broad category of “die-off reactions”. I’ve also had weird nervous system issues in response to antibiotic therapy — mainly tingling and pin prick or “bug bite” sensations. One strange sensation that I’ve had the longest is a feeling that there’s a long piece of duct tape stuck to my back just under my left shoulder blade. Over time, the nervous system issues have become less severe and less frequent.

    When you were taking prednisone, what dose were you on?

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #461817
    kkim
    Participant

    Hi Phil! Thank you for your reply.

    So about a year ago, I was given a steroid (dexamethasone) injection due to an allergic reaction. My allergy symptoms were gone but I was left with dizziness and brainfog which didn’t resolve for couple weeks. Over time I developed more symptoms.. muscle pain, joint pain, fatigue and etc. I went back to my allergist and he prescribe quite high dose of prednisone – 50mg per day.

    I wasn’t able to tolerate that so bumped down to 25mg. I had strangest symptoms on prednisone… felt horrible – don’t remember exactly how I survived. I was on that dose for three weeks. This is when my nerve pain started. After seeing my neurologist, he made me come off it slowly. It took me about a month and half to come off. So I was on prednisone for about 2-3months total. My rheumatologist prescribed prednisone after lupus diagnosis but I refused to take. Nerve pain reduced slowly after starting plaquenil.

    My ND thinks steroid is what activated my dormant lyme. I don’t know if this could be true. I understand his theory but I dont’t know if it’s possible. I’m 30 yo and my last possible contact with lyme (camping in the woods) is at least 15 years ago. I live in Vancouver BC where lyme is not very well known..

    If it’s a die off reaction. I’m surprised by what a single dose of doxy can do. I will be going back on it tomorrow just 100mg a day. I’m just hoping it won’t be severe as before.. I still have slight pins&needles, burning, tingling and itching sensation since my last dose three days ago.

    Kim

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