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Would strong antibiotics relieve CFS or M.E symptoms?

Discussion in 'General ME/CFS Discussion' started by htrj, Nov 14, 2014.

  1. htrj

    htrj

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    Forgive me if that question is in any way ignorant or disrepectful to M.E or anyone suffering from the condition but it is significant to whatever I am suffering from. I do not yet understand how this illness works.

    If I take 1000mg of Ciprofloxacin per day for three or four days all my fatigue disappears and I regain a satisfactory degree of cognitive function. However, the fatigue, headaches, muscle aches and woolly headedness will return a few weeks later. Can anyone here explain why that happens and is it an indication that I should be treating myself for M.E?

    To anyone who doesn't know what Ciprofloxacin is my Doctor said it kills as many bacteria as bleach but will also start to destroy my kidneys and possibly leave me with C-dificil if I keep taking it. Needless to say I am no longer taking it.
     
  2. dan062

    dan062 Senior Member

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    Hi @htrj,

    Here's my quick answer. But bear in mind that I'm also a newbie to the CFS/ME world (do your symptoms match).

    Firstly, how long were you on the Cipro for? And how many courses at that dosage have you already had?

    Taking an inadequately short dose of an antibioic is a very bad thing to do --as in the case of interrupting a prescribed dose before you have finished it.

    Think about it: by doing so you're effectively selecting for only the resistant strains to that antibiotic, which can then multiply and no longer be target-able by what you originally used to kill them with.

    So, working with your medical practicioner, you might need to figure out a sufficiently long dose that will totally clear out the infection as it seems, from your symptoms, as if it simply keeps returning when you stop the med.

    Perhaps adding in a second line therapy as well could be an option.

    What symptoms are you having? Cipro is usually prescribed for prostate / UTI issues afaik.

    Re C.Diff: long time exposure to any antibiotic creates a risk for things like this as it's the dysbiosis that allows the 'bad guys', or opportunistic organisms, to take over your gut.

    I think Cipro is a worse offender in this regard than some of the gentler broad spectrum stuff like amoxicillin but check it out on Google (I think there was a specific study done).

    One obvious strategy is to take a high dose probiotic. Start now, as your gut will already have changed from your previous doses, and take it indefinitely -- or until your situation has resolved.

    Bear in mind that there have been some adverse reports of toxicity from fluoroquinolones -- make sure that you're aware of all potential side effects.

    Hope your symptoms get better.
     
    Last edited: Nov 15, 2014
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  3. htrj

    htrj

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    Thanks,

    This time last year I had a nasty UTI which amoxicillin apparently cleared.

    By Christmas I returned to my GP complaining of constant tiredness, lack of strength and aching all over. He said I had flu but just hadn't developed the cold symptoms. A few weeks of bed rest and that episode went away.

    A few months later the UTI returned, amoxicillin didnt work, then something else was prescribed which didnt work either, then the cipro was handed to me. That cleared it up again. Since then I have had episodes of prolonged fatigue which the Cipro has always got rid of. For the last few weeks though I have been off the cipro waiting for an appointment with a rheumatologist while suffering from the fatigue, muscle aches, headaches, tiredness, lack of strength, woolly head, dry throat. No UTI or water works trouble though.

    Two blood and urine tests have been taken, one in October and the last in November. On each occassion they came back saying i'm fine.
     
  4. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Dear htrj,
    If you have a bacterial infection that requires antibiotics then you need to know what it is and where it is. I agree with dan062 that short courses with relapse can only suggest partial treatment with resistance. The most important thing would be to make sure there is no closed off infection like a small kidney abscess - which might show nothing in urine. If there is no infection of that sort then it may be that you just have fluctuating fatigue and you take the antibiotic when it is bad and then it gets better. If it does not seem like that it may not be, but if there is a reason to use antibiotic it is essential to find out what infection is being treated before you continue and just make it totally resistant.

    I don't think there is good evidence for any ME being due to persistent bacterial infection, even if a number of people might think so. But persistent fatigue would be a common feature of something like a small renal abscess.
     
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  5. duncan

    duncan Senior Member

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    Well, some individuals diagnosed with ME who had two or three IgG bands positive on their Western Blots actually will have been told - conclusively - that they don't have Lyme, and be told - probably - they have ME/CFS. I'm willing to wager antibiotics will help a goodly portion of that crew, and that those cases of ME/CFS ARE due to persistent bacterial infection. Despite what the IDSA and friends have to say. :)

    But that's just semantics, I suppose.
     
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  6. Hip

    Hip Senior Member

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    @htrj
    In addition to virally-triggered ME/CFS, I had a long-term recurrent UTI, that would flare up for a few days every 3 or 4 weeks, and then clear up on its own. During the flare up period it would create a really foul smell in the urine, and it would greatly increase my fatigue levels. However urine tests on a sample taken during the flare up period found no organisms.

    Some people with UTIs do well on the supplement D-mannose (also found in cranberries). D-mannose prevents some common UTI bacteria such as E. coli from being able to cling on to the urinary tract lining. However, D-mannose does not work work for all bacterial species, and it did not help me.

    I tried the antibiotic trimethoprim, which is commonly used for UTIs, but this did not prevent infection recurrence, unless I kept taking it constantly, which I did not want to do. Probiotics I found reduced the frequency of recurrence of my urinary tract infection, but did not eliminate it.

    But what worked very well for me was horsetail herb (which contains silica): this seemed to completely prevent my UTI recurrence, and after taking horsetail daily for over a year, I find I now rarely ever get UTI recurrences anymore, even though I have now stopped taking horsetail. So horsetail appeared to be curative for my chronic recurring UTI, which I had had for 15 years (predating my ME/CFS).

    Horsetail is actually an ancient Greek and Roman treatment for kidney infections.

    The silica in horsetail alters glomerular function in the kidneys. You don't want to take too much horsetail, though, because high doses can be a bit toxic for the kidneys. I took a horsetail tablet with 50 mg of silica daily.
     
    Last edited: Nov 14, 2014
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  7. Hip

    Hip Senior Member

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    There are a few species of bacteria that can cause ME/CFS or ME/CFS-like conditions:

    Chlamydia pneumoniae
    This intracellular bacterium (= one that lives inside human cells) is a known cause of ME/CFS. 1
    I don't think this is causing your symptoms though, because it takes many months of antibiotics before you get this infection under control, and you had a response in just days.

    Coxiella burnetii
    This rare bacterium causes a disease named Q fever, which has ME/CFS-like symptoms. 1 2

    Brucella
    Brucella bacteria can cause ME/CFS-like symptoms.

    The last two I believe are treatable with a course of antibiotics, so you probably don't have these (unless you only took your antibiotics for a few days, not long enough to kill off the bacteria).
     
    Last edited: Nov 21, 2014
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  8. Hip

    Hip Senior Member

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    Would small kidney abscesses show up on an ultrasound examination?
     
  9. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Very likely. It is a long time since I did general internal medicine but an abdominal ultrasound would come to mind as a non-invasive way of checking for some infection sites.
     
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  10. Sushi

    Sushi Senior Member Albuquerque

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    I agree with others who have said that before taking antibiotics it should be determined what infection you are trying to treat. Indeed, some infections, left untreated, have led to ME/CFS-like states of illness. But in order to treat appropriately you need to know the best protocol for what you are treating.

    This might mean approaching an M.D. who is versed in testing for the sorts of infectious diseases that "turn up" in patients diagnosed with ME/CFS.

    Sushi
     
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  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Sinusitis is commonly found amongst cfsers and can be a significant cause of fatigue, brain fog and headaches. It's worth a ct scan of sinuses to rule it out also. For many who have cfs and sinusitis seem to have ongoing issues with it and find it hard to treat.
     
  12. htrj

    htrj

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    If this is a recurring infection is it likely that I would show no other symptoms. Why don't I have a fever for instance?
     
  13. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Have you taken your temperature. With hidden infection it may not rise much above 37.2 C. But if it does not feel like an infection there would seem to be no value in taking antibiotics? I think you want a diagnosis before taking further courses.
     
  14. htrj

    htrj

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    Thanks Jonathan,

    Yes, I have been taking my temperature daily over the last month it has never fluctuated far between 35.5c and 36.5c.

    Having gone through my NHS G.P to date, mostly locums as there has been a tragedy within my local surgery, I have arranged an appointment with a private rheumatologist on Monday morning. Rheumatology is what has been suggested by the NHS and also by Bupa when I discussed it with them over the phone. Do you think this is a reasonable place to start or would I have been better of speaking to Urology?

    Also, if I do have a kidney infection is it likely to be affecting my adrenal glands and therefore provoking the fatigue?
     
  15. Valentijn

    Valentijn Senior Member

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    Do you ever feel feverish, even though your temperature is pretty normal?

    My normal is 35.5-36 when I'm feeling non-feverish, but will rise to 36.5-37.5 when I feel very feverish. My forehead will also be hot to the touch when I feel feverish even though my temp isn't particularly high.

    This has been happening almost on a daily basis for me while taking antibiotics for the past 5 months, but I very rarely had any fevers prior to starting antibiotics. So in my case it's probably a classic Herxheimer reaction as borrelia spirochetes die and release toxins, rather than a direct reaction to the infection itself.
     
  16. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I was only suggesting a kidney infection as an example of something hidden away and partially treated. A rheumatologist is probably a good idea. A urologist is unlikely to understand anything except plumbing! If it is a renal infection it is unlikely to have any effect on the adrenals.
     
  17. dan062

    dan062 Senior Member

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    @htrj You don't mention your gender or what kind of symptoms you were prescribed the Cipro for (I appreciate that with urological stuff it could possibly be a little embarrassing, but we're all anonymous here!).

    @Jonathan Edwards Thank you for mentioning renal abscesses. It's not something I've looked into (or had heard about) and my fatigue began with symptoms in this area. I'm going to ask for an abdominal ultrasound at my doctor's appointment next sweek (I'm not sure how it will go down, but I'm doing to try anyway!). Interesting, though old, abstract of an RF positive abscess case here.

    Seems there are potentially hundreds of obscure diagnoses with symptomologies similar to ME/CFS that are likely to fly under the radar so long as testing is so carefully doled out.
     
  18. dan062

    dan062 Senior Member

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    @htrj: I've been through something extremely similar to you.

    I'm guessing that the 'something else' you were prescribed after the amoxicillin and before the cipro may have been something along the lines of Nitrofurantonin (Macrobid?).

    I'm thinking of two explanations:

    i) The abscess mentioned by @Jonathan Edwards above. I hadn't heard of this either and am going to ask for the abdo ultrasound. Come to think of it, I think I had asked about it before. This time I will try demanding!

    ii) I came across this interesting chapter a while ago. This probably doesn't apply to you (I have rheumatoid factor so RA is a suspicion, although it seems unlikely at the moment). It follows a general line or thought that infections of any kind can trigger a lasting immune response (autoimmunity in other words). This is how another paper summarized it:

    "The reaction of the body to infections may cause secondary illnesses, such as rheumatic fever and poststreptococcal glomerulonephritis, (...) chronic infections trigger multiple immunological responses potentially associated with specific diseases. Infections can lead to formation of multiple autoantibodies, for example, rheumatoid factor, antinuclear antibodies (ANAs), antiphospholipid antibodies, and antineutrophil cytoplasmic antibodies (ANCAs). The development of autoantibodies in the course of an infection may or may not be associated with manifestations of autoimmune disease."

    I think the relationship between infection and autoimmunity is a fascinating debate. @Jonathan Edwards undoubtedly knows lots more about this. There are various theories: 'hit and run' (infection hits, leaves, and triggers lasting autoimmunity) or the subclinical chronic infection theory.

    In other words, possibly either the UTI triggering a CFS/ME like state, or there being a persistent infection which, if eradicated, will get rid of the CFS/ME state (this is obviously more hopeful).
     
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  19. meandthecat

    meandthecat Senior Member

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    I have also experienced a remission of symptoms when taking antibiotic though usually complicated by surgery which makes it hard to determine a cause.
    I get a high from the general anaesthetic, perhaps a stimulation of the adrenals and or endorphins and this last time felt amazing, brain worked and good energy. That drops off after a couple of days but the exhaustion doesn't return till a few days after I finish the course of antibiotic. It creeps back to the same as usual.
    I don't know if it means anything but it is a pattern over 4 events in 2 years.
    Pointless talking to the GP and I'm not anxious to take anti-B's but do wonder...
     
  20. Daffodil

    Daffodil Senior Member

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    There are several doctors who believe that autoimmune disease is caused by intracellular bacterial infections but I am not sure you can ever find out for sure exactly what you are treating. You could try MDL labs, Igenex, Infectolabs for Lyme, etc
     
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