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Thread: I need a 'super antibiotic'... Are they ever coming?

  1. #1

    I need a 'super antibiotic'... Are they ever coming?

    Here's a shot at hoping the right person reads this...


    I am 32 years old. I broke my neck in a motorcycle accident 9 years ago. As a result, I am paralyzed from the chest down. I have a C5 SCI injury. I use a indwelling catheter 24/7... Since my injury my catheter has caused me constant recurrent infections. I have taken antibiotics to clear it up, and they always do... But return every 2nd day after concluding treatment... I am literally infected every day of my life! My urine becomes murky, flaky and I become dizzy sitting up in my wheelchair. My hands get cold and I start to fill like I am 'high'... I take antibiotics and everything goes back to normal. My urine will be crystal clear!...


    My doctor says my antibiotic options are running out. I will at some point end up with a superbug... "My urine flakiness has just returned...!! ... I'm scared!!"...


    I have tried everything! And not at recommended doses either. I take it to the extreme and still have no luck! Here is a list of everything I've tried so far...


    ? Extra Strength Cranberry supplements
    ? Extra Strength Dmannose
    ? Apple Cider Vinegar
    ? Kangen water
    ? Olive Leaf
    ? Oregano Oil
    ? Colloidal Silver/Ionic Silver
    ? Lemon Water
    ? Diatmascus Earth (spelled something like that)
    ? Probiotics
    ? Kidney cleanse supplements (every different brand)
    ? Zappers
    ? food grade Hydrogen Peroxide
    ? Allicin supplements
    ? Magnesium supplements
    ? Miracle Mineral Supplement (MMS)
    ? Microcyn bladder irrigation treatments
    ? givin up sugar completely! Don't drink any sodas, alcohol, coffee or any beverages other than water.


    I only know of one trauma to my urinary tract which was when a physician's assistant at my urologist inflated a catheter which wasn't pushed all the way into my bladder... I just had a spinal cord injury, I knew something bad happened but wasn't aware whether it was severe or just simple stimulation to my bladder. Anyways, I went home and was having severe Autonomic Dysreflexia. When we realized my catheter bag was not draining, my girlfriend deflated the balloon from the catheter and blood started gushing from my "Johnson". We called 911, and went to the hospital ER. They told me I was fine, replaced my catheter and sent us home... Could scar tissue do this to me? I have literally thought of and tried everything else!


    ... I'm tired of being sick. I just want my life back...
    Is there no super antibiotic out there that I haven't come across, yet??

  2. #2
    Quote Originally Posted by KeithSmith1985 View Post
    Here's a shot at hoping the right person reads this...


    I am 32 years old. I broke my neck in a motorcycle accident 9 years ago. As a result, I am paralyzed from the chest down. I have a C5 SCI injury. I use a indwelling catheter 24/7... Since my injury my catheter has caused me constant recurrent infections. I have taken antibiotics to clear it up, and they always do... But return every 2nd day after concluding treatment... I am literally infected every day of my life! My urine becomes murky, flaky and I become dizzy sitting up in my wheelchair. My hands get cold and I start to fill like I am 'high'... I take antibiotics and everything goes back to normal. My urine will be crystal clear!...


    My doctor says my antibiotic options are running out. I will at some point end up with a superbug... "My urine flakiness has just returned...!! ... I'm scared!!"...


    I have tried everything! And not at recommended doses either. I take it to the extreme and still have no luck! Here is a list of everything I've tried so far...


    ? Extra Strength Cranberry supplements
    ? Extra Strength Dmannose
    ? Apple Cider Vinegar
    ? Kangen water
    ? Olive Leaf
    ? Oregano Oil
    ? Colloidal Silver/Ionic Silver
    ? Lemon Water
    ? Diatmascus Earth (spelled something like that)
    ? Probiotics
    ? Kidney cleanse supplements (every different brand)
    ? Zappers
    ? food grade Hydrogen Peroxide
    ? Allicin supplements
    ? Magnesium supplements
    ? Miracle Mineral Supplement (MMS)
    ? Microcyn bladder irrigation treatments
    ? givin up sugar completely! Don't drink any sodas, alcohol, coffee or any beverages other than water.


    I only know of one trauma to my urinary tract which was when a physician's assistant at my urologist inflated a catheter which wasn't pushed all the way into my bladder... I just had a spinal cord injury, I knew something bad happened but wasn't aware whether it was severe or just simple stimulation to my bladder. Anyways, I went home and was having severe Autonomic Dysreflexia. When we realized my catheter bag was not draining, my girlfriend deflated the balloon from the catheter and blood started gushing from my "Johnson". We called 911, and went to the hospital ER. They told me I was fine, replaced my catheter and sent us home... Could scar tissue do this to me? I have literally thought of and tried everything else!


    ... I'm tired of being sick. I just want my life back...
    Is there no super antibiotic out there that I haven't come across, yet??
    Sorry you've been through so much. Seems like you've tried a lot, but there is still more. I have a couple suggestions and I'm sure others will have additional ideas.

    1. Do you really need an indwelling cath? Anyway you can cath yourself?
    All of us (almost) get infections from time to time, but you lessen the chances of infection if you don't have a foley or other indwelling cath.

    2. Have you tried antibiotic prophylaxis (as in before/whether or not you have an infection)?
    Nitrofurantoin has been used by some people (including me) on a daily basis to prevent infection. There's pretty much no risk of developing resistance to this medication because of the way it works (but there are some bugs that are naturally resistant to it).

  3. #3
    Thanks Funk. I will talk to my doctor about it tomorrow. I believe I already went through Macrobid though.

  4. #4
    i too was on macrobid for a few years it broke my cycle where i was getting infections right after i was off antibiotics. i am no longer on the macrobid and have been good so far. haven't been on them in about 4 years. also have they checked you for both bladder stones and kidney stones?
    T6 Incomplete due to a Spinal cord infarction July 2009

  5. #5
    Thanks Smash. Yeah they sent me and for an ultrasound on my kidneys and were checking for stones... My doctors baffled. I'm hating this...

  6. #6
    Have they done a cystoscopy to look inside the bladder?

    Also, there are a few recent threads about using Gentamicin instillations into the bladder to prevent UTIs. Look for the recent thread about this, and print out the paper that is mentioned and bring it to your doctor tomorrow. It is a better than taking an oral antibiotic everyday to prevent infections.

  7. #7
    Are you actually having UTIs (fever, chills, AD, elevated WBC in your blood, severe malaise, etc.) or are you really talking about chronic colonization (bacteria in your urine on culture), which may include cloudy or even foul smelling urine, sediment/mucous, etc.? The former should be treated with an appropriate antibiotic selected based on a urine culture and sensitivity (C&S) test (not just given a broad spectrum antibiotic like Cipro automatically), and the former should NOT be treated with antibiotics with rare exceptions. Also, when you have a true UTI, it should be considered a "complex", not "simple" UTI, and treated with a course of 10-14 days using oral (or a combination of IV and oral) antibiotics (based on the C&S) and not a 4-7 days as is done for ABs with a simple UTI.

    Colonization is going to be present pretty much 24/7 with an indwelling catheter, and in many who do intermittent cath as well. Trying to eradicate colonization with antibiotics usually just results in you being colonized with bacteria that are resistant to those antibiotics, making them unavailable for treatment of real UTIs.

    Of course you should also be having regular (at least annual) tests to screen for other causes of frequent UTI such as an ultrasound or CT of your entire urinary tract for stones, and a prostate exam (and if you are over 40) a PSA level. The latter, done by a urologist ideally, should be used as a screen for possible prostatitis, which is a chronic infection of the prostate, which can seed bacteria into the urine constantly, and which protects the bacteria from most antibiotics.

    If you have done all of this, and are still having frequent real UTIs (not just positive cultures), especially if it is with the same strain of the same bacteria over and over (as identified in a C&S) then you should get a consultation with an infectious disease physician.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  8. #8
    I would love to say or think I am just colonized. My blood pressure becomes severely low, my hands become ice cubes, I become dizzy and short of breath. As well as the cloudy, smelly and sediment filled urine. My hands began to tingle (which I normally have no sensation too). I feel ants crawling around my "manhood" (which I also do not feel on antibiotics). I have been dealing with this for 9 years... The fight continues.


    Thanks everyone!





  9. #9
    Quote Originally Posted by KeithSmith1985 View Post
    I would love to say or think I am just colonized. My blood pressure becomes severely low, my hands become ice cubes, I become dizzy and short of breath. As well as the cloudy, smelly and sediment filled urine. My hands began to tingle (which I normally have no sensation too). I feel ants crawling around my "manhood" (which I also do not feel on antibiotics). I have been dealing with this for 9 years... The fight continues.


    Thanks everyone!
    I posted this on another thread, but you may find this interesting: Reposted from http://sci.rutgers.edu/forum/showthr...eter-Blockages

    Here are a couple threads the original poster may want to read. I understand the first thread I've referenced is nearly 10 years old. But, the information is still relevant. The first thread is also very long, but there is a lot of good information in all of those posts to help you decide upon your own process. The second thread is newer and has some particularly interesting information on a product that is sold in New Zealand and Australia. The product is called Microdox UTI, which uses Microcyn Technology. I have posted information on post number 90 that shows the label and usage information card for Microdox UTI. The usage card has three usage levels for Microdox UTI: Acute Treatment, Post-Acute Treatment and Prophylaxis.

    I don't advocate the use of Microcyn Technology to "cure" a urinary tract infection and it shouldn't be used in lieu of antibiotics prescribed by your doctor after a uninalysis (UA) and a culture & sensitivity (C&S) lab tests. But, a number of us have found that Microcyn Technology helps to prevent urinary tract infections, reduce biofilm occurrences and biofilm recurrences. Used prophylactically (instillation every day or every other day), Microcyn has helped to reduce the cloudy appearance, odor, and sediment in urine.

    http://sci.rutgers.edu/forum/showthr...light=microcyn

    http://sci.rutgers.edu/forum/showthr...light=microcyn

  10. #10
    Is this indwelling catheter going in your urethra? If so, I wonder if maybe a suprapubic might make any difference. ?

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