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Antibiotics cause these symptoms....why?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Timaca, May 23, 2012.

  1. Timaca

    Timaca Senior Member

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    Whenever I take any antibiotic (that get absorbed from the gut) I get a series of symptoms that is fairly predictable, starting anytime within the first 2 weeks and lasting up to 6 weeks. These symptoms include tachycardia, joint pain, stiff and sore neck, a day where I am SO fatigued I have to be horizontal and often a flu like day (severe chills, very sore body, tender skin, hurts to walk etc).

    WHAT can cause this? Drug hypersensitivity (to all kinds of drugs???) Killing off of pathogens? What? If you have articles, please let me know.

    Thank you in advance,
    Best, Timaca
  2. caledonia

    caledonia

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    Stiff and sore neck makes me think of Lyme. So - Lyme die-off?
  3. ukxmrv

    ukxmrv Senior Member

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    I'd be interested to see if there are any new theories on this.

    For years other patients told me that my reaction to AB's was due to a herx reaction to whatever was their favourite organism but I remain unconvinced as there is no evidence and after each AB course I was left worse off.

    That changed for me when I tried Doxycycline with Valtrex and Imunovir at the same time. Suddenly a small improvement and without the previous severely bad reaction to the AB's. Must be more happening with some of us.

    Don't know if that is the same for you Timaca?
  4. Timaca

    Timaca Senior Member

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    I don't know exactly what is going on. At first I thought it was a "herx" reaction to the killing off of pathogens. And I have felt better with antibiotics. IV rocephin brought me from the land of the not functioning, to the land of the living again. Three weeks after I stopped it, all of my symptoms came back like a freight train and hit me hard. :(

    I do think I'm dealing with various pathogens (viral and bacterial). Treating Cpn brought my IgA titers down from as high as the lab measures to as low as the lab measures. (And yes, I had a reaction when I started those antibiotics too, which involved significant joint pain, tachycardia, horizontal day, etc).

    I am currently on Valtrex (but not Imunovir) and I had the above named symptoms after starting the Bactrim DS for a UTI. It was remarkably bad. I will see my PCP about it next week. She knows these types of reactions happen to me. I don't think she has an explanation. I will let my other doctors know about it when I see them next. I feel it is important for me to get to the bottom of this.

    I am going to read up on hypersensitivity reactions. I don't think that this is what is going on with me because I don't get a rash, or a fever, and my liver tests are always normal (although I don't have LFTs run at the time of the problems).

    ukxmrv~ What are you treating with the doxy, valtrex and imunovir? One thought is that when one does have a reaction to a drug that then a virus (such as HHV-6) reactivates. Perhaps your being on an antiviral prevents that from happening. What kind of reactions did you have when you started antibiotics? Did it happen with all antibiotics? How long after starting antibiotics does it happen for you?

    Thanks for your replies,
    Timaca
  5. xrunner

    xrunner Senior Member

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    It's difficult at times to know whether it's a sensitivity or herx reaction.
    In my experience, it's only after you stopped that you can be sure of which. If you get better after the course then it was most likely a herx.
    The effect of Rocephin is not surprising. If you have Lyme, it will kill spirochetes but it will also cause Borrelia to change form or hide. When attacked, Borrelia can encyst within minutes and change back to motile form within a couple of weeks (I think) once it's safe. For this reason some doctors use other antibiotics together with Rocephin to get at most forms.
  6. bedman

    bedman

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    How is your gut? I get also symptoms from abx and think its due to a leaky gut.
  7. Timaca

    Timaca Senior Member

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    Hi bedman~
    My gut is fine.

    Best, Timaca
  8. Jenny

    Jenny Senior Member

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    Isn't this 'just' an exacerbation of ME symptoms Timaca? What you describe are my ME symptoms exactly, and I'm not on abx. These same symptoms are always there, and have been for years, though they wax and wane in severity. What are your symptoms when you are not on abx?

    So I would think it's unlikely these symptoms are due to drug sensitivity, but who knows what's going on. Cytokines or overactive immune response perhaps?

    Jenny
  9. liquid sky

    liquid sky Senior Member

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    I test positive for borrelia and always have a similar reaction to antibiotics. The only one I can take without trouble is Doxycycline. It actually helps my symptoms a little. Sounds like a herx reaction to me.
  10. adreno

    adreno 3% neanderthal

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    Which antibiotics are you taking? The quinolone class can cause some pretty nasty side effects, including tendon damage.
  11. Shellbell

    Shellbell Senior Member

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    It was a quinolone antibiotic that tipped me over the edge to this place and causes many of the symptoms you are experiencing. That was 5 years ago. And I noticed you said your gut is fine. If you are taking an antibiotic, more than likely it isn't. Anitibiotics can really mess it up. My gut appeared to be fine at first, but it's been 5 years since falling severely ill and I am still trying to repair the damage that they caused.

    Shellbell
  12. adreno

    adreno 3% neanderthal

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  13. Timaca

    Timaca Senior Member

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    These are not just an exacerbation of regular CFS/ME symptoms. They are definitely caused by the antibiotics. One of my doctors has seen me in tachycardia because of it and he prefers I not travel within two weeks of taking antibiotics, but sometimes travel is unavoidable.

    It has happened with every antibiotic I've taken. IV rocephin, IM bicillin, doxycycline, rifampin, a doxy/rifampin combo, minocycline and ketek. Oh, and most recently to Septra DS and Bactrim DS (same drug--both for UTI treatment). Like clockwork, I will have some of these serious issues within the first two weeks of starting the antibiotic. Then other symptoms will pop up randomly up to 6 weeks. These are severe symptoms.

    I went back over my symptoms and my labs and found some interesting stuff, so I'm asking my doctors about it. You can read about it in this thread: http://forums.phoenixrising.me/index.php?threads/lymphocytes-and-neutrophils.17720/#post-271109 Basically what I found was the "herx" reaction correlates with my lymphocyte% dropping and my neutrophil % increasing.

    I don't think this is a drug hypersensitivity reaction as my eosinophils don't go up, I don't get a rash, I don't get a fever, and my liver labs are fine. I don't think it's a drug toxicity issue as I stay on the drugs and the bad symptoms resolve. And in some cases I've felt a lot better after a period of time on the antibiotics (IV rocephin in particular).

    Right now I'm calling it a "herx" or more appropriately the TURTA Syndrome (Timaca's Unusual Response To Antibiotics :D ). Seriously, though, it is really bad. This last one happened while I was traveling and it made me realize how bad the symptoms are and that I've got to get to the bottom of it!

    Thanks for all the replies,
    Timaca
  14. Timaca

    Timaca Senior Member

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    Jenny~ To answer your question a little more clearly....yes, I do have joint pain as part of my illness, but when I take an antibiotic, all of a sudden (usually within the first 2 weeks) one joint will REALLY start to hurt. For example, once my left hip and right knee started killing me such that it was hard to walk up the stairs in my house. I mean REALLY hurt. Another time, with a different antibiotic, my left elbow started to kill me. Really painful. At the end of that herx, it was my right elbow that was hurting very badly.

    Then I always get a "horizontal day". I cannot be vertical. Just cannot. It is unbelievable. Every part of my body shuts down....muscles and brain too. All I can do is lie down and zone out for a few hours to a day. And it only happens with the antibiotics. Sometime in the first 4 weeks, usually in the first 2.

    And I get tachycardia. Once it put me in the hospital because it wouldn't go away. Even my cardiologist says that the tachycardia is not a cardiac problem but another problem (likely pathogen related) affecting the electrical conduction system of my heart.

    And the only time I get the severe flu like day with very tender skin, hard to walk, hurting all over and severe chills, but no fever is sometime after taking the antibiotic.

    My symptoms that are part of my illness and are there on a daily basis are: fatigue, burning, sparking crawling nerves all over my body, brain fog, random joint pain, muscle pain, ear ringing, and a feeling of being disconnected from my body.

    Now, I have realized that sometimes my symptoms get much worse (without taking antibiotics) and we have caught in the lab data either my WBC and platelet dropping but lymph and neutrophils are normal (indicating a viral infection) or other times (and I just found this by going though all my labs) my WBC and platelet are normal but my lymph% drops and my neutrophil % increases. I *think* this may mean a bacterial infection, so I'm wondering if at those times I'm experiencing a reactivation of a viral pathogen and other times a reactivation of a bacterial pathogen.

    We'll see what my doctors have to say....

    At any rate I really, really want to get to the bottom of what is causing these "herx" reactions.

    Timaca
  15. Jenny

    Jenny Senior Member

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    It's interesting because what you get with these 'herx' reactions is much more like the symptoms I have all the time, though not quite as severe. I don't have most of the symptoms you get on a daily basis - ie the burning, sparking crawling nerves, ear ringing and feeling disconnected. But my knee pain sometimes now prevents me from walking, I often have to spend hours lying immobile, I get tachycardia (not severe though), and I permanently have a feeling of severe flu.

    My lymphocytes are always slightly below the normal range.

    I haven't a clue what all this means, but I'm puzzling over what our different symptoms might tell us.

    Jenny
  16. Timaca

    Timaca Senior Member

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    Hi Jenny~ I used to be much worse than I am now. I do think that antibiotics and antivirals have helped me improve. I am much more functional and can do more now than I used to. I still have plenty of symptoms however. :(

    Last year I had 9 bouts of tachycardia. 8 of the 9 we can definitely say were related to either my starting an antibiotic or an antiviral or my having a reactivation of a pathogen (accompanied by a drop in WBC). I used to feel like I had the flu all the time....or at least I would wake up and say to myself "I feel so sick." However, the flu like day I get with the antibiotics is significantly worse....very tender skin, hurts to walk, hurts even to sit up, I just ache all over and I have severe chills.

    Is it your absolute lymph count that is low or % or both? Can you share what the reference range is at your lab and what your numbers are?

    What I found fascinating, is one time during what I think was a reactivation of a pathogen (and I'm supposing it was bacterial because my WBC didn't drop)...my left hip and left elbow started killing me. The next day my back started hurting along with full body muscle pain. A couple of days later I got a bad headache. I had a lab draw in the middle of all this and my absolute lymp count was at .5, just below the reference range .6-5.5. My neutrophils went up to 80% and lymph% dropped to 10. Those are both outside the reference range for most labs, but not the lab I get tested at (it has a broader reference range--which I'm thinking is too broad).

    What symptoms do you have, besides what you mentioned?

    Best, Timaca
  17. Jenny

    Jenny Senior Member

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    Hi Timaca

    It's my absolute lymph count that's always low - around 1.45 (range 1.5-4.0). % is 22. I haven't had neutrophils tested.

    This is my full list of main symptoms - sorry about length - I had this already typed up for another purpose.

    Aching all over
    Feeling cold and shivery
    Severe weakness and exhaustion
    Nausea
    Vertigo
    Lack of appetite – lost 2 stone in weight
    Severe dizziness
    Severe headaches
    Muzzy head
    Hoarseness when very bad
    Stabbing pain behind the eyes
    Electric shock sensations down left arm
    Sensitive scalp
    Sensitivity to sound and light
    Extreme sensitivity to temperature – getting slightly chilled makes me much worse
    Severe mid-back pain
    Severe feeling of ‘malaise’
    Severe night sweats
    Interstitial cystitis
    Constipation
    Sudden depression for no reason
    Severe pain in knees, back of neck, spine, back of hands
    Pain in areas of previous injury
    Unable to hold a pen - hands would ‘lock up’
    Vitiligo on arms and legs
    All symptoms better in hot, dry weather, often much worse when weather suddenly turns cold and damp
    Symptoms much worse on waking
    Sneezing a lot
    Anxiety for no reason
    Fast heartbeat, sometimes irregular beats and palpitations, particularly late evening
    Sudden episodes of profound depression, coupled with mid-back pain, which last about one minute then resolve with hot flush which lasts 5 mins or so. I get these about 15 times a day when in a relapse. I don’t get them when I’m a bit better, which makes me feel they’re not menopause related.

    Jenny
  18. Timaca

    Timaca Senior Member

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    Hi Jenny~ I can relate to a lot of your symptoms. I'm sorry that we are both ill and I wish for better health for all here on the forums. I wonder if some of your problems might be mold related as your symptoms are better in hot, dry weather and worse in cold damp weather. Have you ever read the book Mold Warriors? http://www.survivingmold.com/

    Best, Timaca
  19. Jenny

    Jenny Senior Member

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    Hi Timaca

    Thanks for this suggestion. I haven't read the book but I've done a bit of thinking about mould. I've done Shoemaker's vision test and that was normal. Also I had a period of 95% remission for 12 years, while living in the same house in which I first got ill, so if that house was mouldy I didn't have any problems with it while in remission. Of course I realise that this doesn't mean that mould isn't a problem.

    I've also had immunotherapy treatment for possible sensitivities to mould, with no improvement.

    So I haven't dismissed this as a problem, but the treatment (getting rid of all belongings, moving house etc) would be so expensive and traumatic I'd prefer to exhaust all other avenues of treatment before embarking on it!

    Jenny
  20. sianrecovery

    sianrecovery Senior Member

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    Just a footnote - Timaca, that symptom list is a ringer for mine when I took interferon alpha/ribavirin for Hep C. There were a variety of things going on within that - my WBC count went down, as did my RBC's - but I guess it also simulated a huge immune response. As for bactrim, be careful, I became allergic to that over a period of time and treatment episodes, like many people, and the last time I was given it had a huge inflamatory response, and was told if I had it again it could become a true anaphalactic response. Abx have often helped my symptoms - I am on them long term at the minute to treat a protozoan infection - but I also think if the body keeps giving clear signs of distress, especially heart related ones, you need to proceed with caution...

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