Herx or Doxycycline Reaction?

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My wife has been suffering from chronic lyme and bartonella for a while now, and is has progressively been getting worse.

She had been put, once again, on doxycyline -- 100 mg in the AM and another 100 mg in the PM.  After a week of this, she started developing severe leg pains in both legs.  Muscle and tendon pains, not joint pain.  She can hardly walk. Her neck and back are also bothering her a lot.

She stopped taking the meds and feels better but not great.

The doctor she is seeing is not being much help in diagnosing the cause of this pain.  We're more or less on our own.

Our research has taken us to the "herx" reaction of the bartonella to the antibiotics, OR a reaction to the doxycycline itself.

Obviously, if it's a reaction to the doxy then she'll need to stop taking it.

But if it's herx, then she'll have to grin and bear it.

How in the world are we to know which it is?

Ideas?

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  • Posted

    Hi Bob,

    Sorry to hear your wife is feeling so unwell with Lyme Disease. All I can tell you is that after a week on Doxycycline I experienced a Herx reaction. My doctor didn't warn me about it, but I was prepared for it as I'd read about in online. 

    Has your wife ever reacted to antibiotics in the past? If not, it's probably a Herx reaction.

    When I had it, it lasted 24 hours. It was very painful and I found it hard to move or talk, but as it subsided I started to feel better each day as I continued with the Doxycycline 28 day course of treatment.

    I suggest you go online and research. The Herx reaction is alarming, but if you understand it you can make a call on whether to continue the antibiotics. I personally believe that not treating Lyme Disease isn't an option as left untreated it will get worse.

    Good luck and I hope your wife feels better.

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    • Posted

      Caroline,

      Thanks for taking the time to reply.  Yes, we have both been researching the Herx reaction information.  If this was a Herz reaction, it was severe.  If it was a reaction to the antibiotic, it was also severe.  My wife had never reacted to the doxycyline like this before, but she has gone through these treatments before and has also never had this kind herx reactions (if that's what they are).

      We're also wondering if this is heart related, since she has had 2 back to back heart attacks a few years ago.  Leg pain is often a result of poor circulation.

      So many questions, so few answers.

      Thanks so much for your input.

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    • Posted

      I took Flagyl for 7 days straight while on a wait list to see a Lyme doc. Convinced an infectious disease doctor to give me a 30 day supply as I was told it killed Lyme cysts. What I did not know is that Lyme doctor would have only had me take this a few times a week because of severe herxing. I spent 10 days in the hospital with legs that would not move !!!
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  • Posted

    Hi Bob,

    As frustrating as it can be, it sounds like you need to go back to your clinician and discuss it. Perhaps you can find a more knowledgeable GP who will listen to your wife. I changed my registered GP to another within the same practice and the difference was like night and day. The first one dismissed me and the second one listened, researched and came up with the correct diagnosis. Might be worth a try.

    All the best to your wife.

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  • Posted

    Dear Bob, Thank you for your interesting post. Huge sympathy and empathy to your suffering wife. Does she have lyme arthritis ( in the joints) as I do? would be good to know.

     I have just been on the phone to my specialist complaining of severe leg pain as well which has started since taking the treatment. Its miserable.  Front thigh nerve/ nagging muscle pain / shooting pains down to my ankles ( worse in left leg) severe hip and knee pain, some difficulty walking. on 200mg of Doxycycline 2 x daily ( twice the dose of your wife). If it weren't for your post I imagined it was some sort of bad sciatic nerve prob but my  Dr said I must come in to see him  so he can  make a better diagnosis. My Q's exactly, - could it be a 'Herx' reaction ( I believe Ive been getting periods of this for several weeks?? - but worsening fatigue and general increase in severity of symptoms) or the Doxy' , or unrelated. your post makes me think IT IS RELATED TO THE LYME, OR THE TREATMENT. I see my Dr next week. once seen i will gladly report back to you.

    ps, I have had this for a month now and getting worse.

    Hester

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    • Posted

      Hester,

      Thank you very much for writing and sharing your experience.

      My wif'e's journey with Lymme must have started many years ago, but she was officially diagnosed about 3 years ago.  She was put on doxycycline for a few weeks and the symptoms went away.

      But then the symptoms came back, not as severe but more pervasive.  She does get pain in her joints, but many other places as well.  We live in the USA, and the Lyme specialist she is seeing is almost positive she's also dealing with Bartonella -- a bacteria that often accompanies Lyme.  The strain she has is difficult to treat without high dosages of several different kinds of antibiotics.

      My wife is very sensitive to all these antibiotics, which is why she is on lower dose than you.

      All the research we have done indicates that this is NOT a reaction to the doxycycline, but rather the herx response that can be rather severe.

      Please do share what your specialist says about all this, as we have run out of specialists to see here.

      All the best to you Hester.

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    • Posted

      Dear Bob,

      How terrible that you have run out of specialists to see, and that your poor wife has difficulties tolerating the Doxy, - intravenous is completely out I expect, what will you do?.  I will gleen anything I can. I noticed on this patient post board that a lady was talking about a 'salt' therapy which was giving her improvements. I felt so relieved after years of miss diagnosis to be diagnosed properly. then felt compleley deflated when I got to understand that the medical profession all around the world quite frankly are at odds with themselves and  unable to get to grips with this terrible disease and treat it effectively.

       I'll be in touch.

       hester.

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    • Posted

      Hi Hester,

      I know your post was over a year ago so I'm not sure if you'll see this, but I was wondering if you ever figured out definitively the source of the nerve pain in your thighs and down your legs? Your post describes my symptoms exactly and I haven't found much mention of these symptoms elsewhere. I'm wondering the same-is it from the Doxy or is it a Herx reaction? It is such a horribly knawing pain sad

      Hope you are doing well now!

      Parker

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  • Posted

    Hester here again.

     Bob, your wife may find this info helpful. My specialist tells me that 100mg 2 x daily is not a therapuetic dose of Doxycycline. Its ex frustrating to have such conflicting information when we are all so ill and just want to get better. Has your wife had the Lyme for years? I have 'Chronic Lyme disease' ( 12 yrs ago) I have also been prescribed Artesunate 20 mg, 4x daily. this is supposed to get rid of the 'biofilm', the protective goo the spirocetes make around themselves once they take hold and the condition becomes 'chronic'. by removing the biofilm the spriocetes can be irradicated with the Doxy. How effective?? Ive been told it could take months of years

     Good luck with everything.

    Hester

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    • Posted

      Hester,

      Thanks for passing this along.  I've forwarded your message to my wife.  You are being told the same kinds of things as we are.

      Where do you live, and how did you find such a specialist?

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    • Posted

      Hi Bob,

       I'm in London UK. Suspect I picked up the Lyme whilst on walking holiday in South Devon many years ago as I rmember the bulleye mark, tho didn't put 2 and 2 togther till 2 yrs ago. ( see my early posts to get the history if interested) My specialist is based at a private clinic North of London. simply Googled' 'Treatment clinic for Lyme Disease in the UK / or something similar until I got something.   I have found out that Specialists here are few also. The first thing after diagnosis specialist did was tell me to watch the film 'Under our Skin'. What an eye opener!. I'd had another specialist  ( enviromental mediciine) saying he would possibly be willing to treat me but that there was a distinct medical regulation Prob holding back doctors treating people properly here in the UK as well as USA.

      Hester 

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