Invest in ME Conference 12: First Class in Every Way
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I need help - just left hospital with deadly drug

Discussion in 'General ME/CFS Discussion' started by starlily88, May 9, 2015.

  1. starlily88

    starlily88

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    I was in hospital on IV anti biotics (gentacmicin) for severe Urinary Tract infection which seems to have tripled with having ME/CFS. Oral drugs don't get rid of infection.

    I had IV gentamicin for few days. Then they gave me a deadly drug called Cipro or Ciprofloxacin - this is a fluoroquinolone antibacterial medicine. This causes very serious permanent side effects which seems to affect people after only one dose.

    Some of the side effects result in death. Tendon rupture or swelling of the tendon (tendinitis)- usually this occurs on the back of the ankle (Achilles) but can include the shoulder, hand, etc. Central Nervous System effects like siezures are not uncommon.

    They only gave me 3 days of Cipro - my first dose my heart rate was so fast for 5 minutes. I looked up the site
    AskaPatient.com - put in Cipro - and was amazed at how many people have permanent injury from this drug from only one or two doses.

    Please advise - I still need to finish something to get rid of my infection. My Sedimentation rate is sky high, my C reactive protein is sky high, and my hemoglobin, hemotocrits are very low ( I have anemia) but not this low.

    Thanks
     
    oceiv likes this.
  2. Sushi

    Sushi Senior Member Albuquerque

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    The problem is, that cipro affects a small percentage of patients this way and others are fine with it. But how can you tell ahead of time which group you will be in? I don't know if you believe in energy testing of medications, but if you have had good experience with this, this could be a possibility.

    Best wishes with this!
    Sushi
     
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  3. Martial

    Martial Senior Member

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    Just exchange it for a different class of antibiotics I suppose. You can also add in herbal antimicrobials and immune system boosting ones if you wanted.
     
    helen1 likes this.
  4. ahmo

    ahmo Senior Member

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    @starlily88 so sorry to hear you've been hospitalized with this infection. Here are some links re Çipro. My husband was on it a long time, thankfully w/o permanent side effects. He has post-polio, which shares some aspects of ME. In searching for alternative treatments for his pseudomonas infection, silver kept coming up. If what you have is interstitial cystitis, low dose naltrexone has shown good results.

    As Martial mentions herbals, I have a number of them listed in my blog entry on Candida purge.

    http://www.advancedbionutritionals....-antibioticresistant-bugs-other-than-MRSA.htm

    Magnesium Heals Cipro Damage - NaturalNews.com
    http://www.naturalnews.com/032714_magnesium_cipro.html
    Drug Rep Exposes Antibiotics: Risks Outweigh Benefits, You Have Alternatives » | ThePeoplesChemist.com
    http://thepeopleschemist.com/drug-r...isks-outweigh-benefits-you-have-alternatives/
    Links & Resources | Floxie Hope
    http://floxiehope.com/fluoroquinolones-links-resources/

    My Favorite Links | Surviving Cipro
    http://www.survivingcipro.com/my-favorite-links
     
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  5. Thinktank

    Thinktank Senior Member

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    Don't wait and see if cipro will poison you because once you know it's too late.
    I was prescribed 2 weeks of cipro for an IBD infection 3 years ago and it has completely destroyed my life.

    What kind of pathogen is infecting your UT?
     
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  6. AndyPandy

    AndyPandy Making the most of it

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    Pretty sure @Gingergrrl had a terrible experience with this class of drugs. I would ask for an alternative.
     
  7. South

    South Senior Member

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  8. Kati

    Kati Patient in training

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    With recurrent UTI or really bad ones, sure enough you should have had a urine culture and sensitivity. This determines what antibiotic is sensitive to the bacteria that are involved in your specific case. sometimes there are only a few choices of antibiotic due to drug resistance, for instance.

    No antibiotics are 100% risk free, nor any medication out there. Non-treatment, partial treatment or treatment with wrong drug increase chance of treatment failure and worsening of your symotoms, pyelonephritis (kidney infection) or sepsis. Believe me, you don't want to go to there.

    If you have concerns with your current therapy, the best thing to do is to contact your physician.

    Best wishes.
     
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  9. starlily88

    starlily88

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    Sushi, thanks so much for your reply. I don't know what "energy" testing of medications is. The Physician Assistant told me in the hospital Friday that I could have one more IV Gentamicin or "Try" Cipro. I told him I can't take any quinolones since I got severe colitis from taking it many years ago.
    He suggested rather strongly that he and my Internist had "decided" that it would be "great" for me to try Cipro by mouth in hospital while he was there - to see if I had any reaction to this drug.

    I was surprised I had No reaction at all - but it is only 250 mg of Cipro, not 500 mg. With being in hospital 3 whole days, which is like prison to me - I did want to leave so badly.

    Why does my internist not see the FDA black box on this? Even though they all knew I take Zanaflex for muscle spasms no one warned me of this - so I took Zanaflex with Cipro Saturday morning - which makes the Zanaflex 14 times more potent! I am so very unhappy having learned that Cipro is ONLY for severe cases and should not be used for a UTI or sinus infection - yet so many now are permanently damaged.

    I am so very angry with my Internist who has no idea of any side effects, and denies their wide occurence.
     
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  10. starlily88

    starlily88

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    Thanks Martial - I did get list of drugs which my urine culture reacted to - but of course the IV gentamicin was the best!
    How could they want to shortcut me from one more day of this drug is beyond me. They did blood work every AM to make sure my liver was fine. Thanks again.
     
    oceiv likes this.
  11. starlily88

    starlily88

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    Ahmo, thanks for all the URL's. I read them all. They did make me upset that so many doctors ignore all the facts. This is so very sad to me. It seems like Internists enjoy staying ignorant of severe side effects. I read on AskAPatient.com of almost 2000 lives that are permanently ruined - after one dose of Cipro, yet the FDA just recently black boxed it, which has not stopped any internists from gladly dispersing this deadly drug.

    I will look into Naltexone - but I do rely on 1 1/4 mg of percocet few times/week for the terrible pain I have so naltexone would not allow me to treat my pain. Thanks for telling me your hubby had no permanent side effects. I have decided that I can't take the Cipro - which means I will probably end up with the UTI never going away. I have had UTI's for the last 5 years with no break - so I have been sent to hospital by internist since no oral antibiotic has ever worked.
     
  12. Kati

    Kati Patient in training

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    Gentamycin blood levels are usually checked as well to ensure you are receiving the optimal dose. There are risks for that drug as well. Too high, you have higher chances of toxicity. too low, and your therapy risks to be ineffective.
    Ineffective therapy means being sicker. Tougher bugs who do not respond to therapy.
     
    starlily88 likes this.
  13. starlily88

    starlily88

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    The urine culture showed I have Escherichia coli infection. I have a list of drugs but hard to interpret.
    Some say ">16", or ">8".
    I can read the Interpretation which uses 3 letters - either "R", "I" or "S". Assume I means ineffective. Don't know what
    the "R" means. Assume that "S" means strong.

    I had 7 strongs - including 'Pipe/Tazonbactam", then "Cefepime", then Cipro (has value of one), then Levaquin,
    then IV Gentamicin which I got in hospital, then Tobramycin, lastly "Nitrofurantoin".

    My internist yells at me if I tell him or give him anything from the internet so I usually don't call for a change of drugs.
     
  14. Eeyore

    Eeyore Senior Member

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    If you have a serious infection you were hospitalized for, don't just stop taking antibiotics and treat with OTC or herbal remedies. If they put you on gent it was probably fairly serious. Gent is well known for side effects - it's nephrotoxic (kidneys) and ototoxic (affects both vestibular function and hearing). However, it has a very favorable resistance profile and is effective against many resistant bugs. Most people, obviously, do not have terrible reactions to gent, and I've known a number of people who have used it without serious issues - but if they put you on it, then you have something that was either very resistant or very worrisome to them.

    Doctors have a huge array of antibiotics they can use. If you are having a bad reaction to cipro, you need to call your doc asap and explain that and get an alternative prescription. I'm sure they can find something else. Most people don't have problems with the fluoroquinolones, but some do. The main one seems to be tendon problems. The achilles tendon doesn't get good blood flow in general, which is one reason why it's never safe to get cortisone shots there - so it may be that the cipro physically settles there for a long time and concentrates there - but that's speculation. Either way, if you are worried about it or having a bad reaction, call your doc and get a diff rx.
     
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  15. starlily88

    starlily88

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    Thanks for your reply. After having my heart race I did google Cipro. The FDA has Black boxed it.
    I do appreciate what you are saying - but I have gotten symptoms several times from "normal" drugs that have sent me to the ER, and been admitted. Since getting ME/CFS I have
    paradoxical reactions to many drugs that I could easily take before I got ME/CFS.
     
    Last edited: May 11, 2015
  16. Sushi

    Sushi Senior Member Albuquerque

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    Well, he should have listened!
    It is also sad that we, as patients, have had to learn to check drug interactions for ourselves. Doctors are often short of time and sometimes don't take the precautions that we would expect. On the other hand, some of us have doctors who do take the time to consider us as an individual patient, with a unique history. I think most of us here have both good and bad experiences with different doctors we have seen.
    Yes, it can but Russian roulette--you don't know if you are going to get the bullet. I was fine with one fluoroquinolone but would certainly hesitate to take another unless I were convinced that it, and only it, was the drug I needed.

    Sushi
     
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  17. Eeyore

    Eeyore Senior Member

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    @starlily88 - I'm not saying you should take the cipro, but rather that you should call your doctor and explain the situation, and ask for an alternative. They probably did antibiotic sensitivity testing on the bug so they know what will work and what won't.

    The other common options for UTI's are nitrofurantoin (rare, but serious, risk of pulmonary fibrosis with this one) and trimethoprim-sulfamethoxazole (muscle pain/damage is a risk with this). Both have other potential side effects too.

    However, your doc will have a better idea exactly what you need and you really should call and ask for advice and explain your concerns.

    I agree that docs are absolutely terrible at treating ME as a general rule. They don't understand it and they don't take it seriously (with some exceptions - but in general). That has seriously harmed the doctor-patient relationship of nearly everyone with ME I believe. However, docs are actually good at some things. If you get certain serious (or even minor) illnesses, modern medicine can be spectacularly successful. This sounds like one of those things that you can count on docs to understand - it's not like ME.

    Obviously you have to make your own decisions, but I'd really strongly urge you not to just discontinue antibiotics, but to call your doctor instead and figure it out with him/her. If you stop now, you might fail to eliminate it, end up back in the hospital, and this time have a more resistant strain. You might end up with worse side effects in the end. I think your doctor can probably find something else that you can take that will be effective. Antibiotics have to be taken well past when symptoms abate to prevent the infection from coming back, and people not finishing prescriptions is a major cause of the development of antibiotic resistance.

    I understand where you are coming from with cipro. I'm not a big fan of the drug class myself, but there are cases where I would take it. Drugs have side effects, but not taking drugs can have major effects too. It's always a tricky risk/benefit balancing game.
     
    SOC likes this.
  18. Eeyore

    Eeyore Senior Member

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    @Sushi

    True, but not taking the antibiotics at all is Russian Roulette as well - there's no risk free option in life in general.

    I personally would avoid cipro in favor of certain other drugs as well - but I would not just stop taking antibiotics after a serious infection. Gent is an aminoglycoside antibiotic, so it's not something you can take orally, but you could make go into a PCP's office and get it IM if that's something you feel is safer.
     
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  19. Sushi

    Sushi Senior Member Albuquerque

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    Agreed, just stopping antibiotics also has serious risks.

    Sushi
     
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  20. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I'm a retired medical technologist and this is my interpretation of what R, I and S stand for:

    R = Resistant: the bacteria that is making you sick is Resistant to the antibiotic, i.e., that antibiotic would be ineffective in treating you
    I = Intermediate: the bacteria is somewhat affected by the antibiotic, but not very much. It's only a good choice if there aren't enough antibiotics in the Sensitive category, or there is a problem with taking an antibiotic from the Sensitive category.
    S = Sensitive: the bacteria is Sensitive to the antibiotic, i.e., the antibiotic can kill it
     
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