Announcement

Collapse
No announcement yet.

Need prayers please...

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Need prayers please...

    Hi all,

    I've been pretty sick since August. I caught a UTI with klebsiella bacteria at the end of August, was treated with Keflex, and got better but only for a week or so, then I started feeling bad again. I went to the doctor in mid September, told him I was sure the infection had not cleared completely.

    My urologist kept telling me I was wrong, it was just IC, and since my urine test strips only showed white blood cells, but no nitrates or blood, he told me that I just can't tell the difference between IC and UTI. For me though, I can usually tell. He told me I'd need to increase my Elavil from 50mg to 80mg, and might need to consider Interstim. I kept saying, "But this feels like infection, not IC." I was actually relieved when a week after that visit, my bladder began to bleed. Again went to the clinic, urologist said, "Lots of IC patients have blood in their urine." I told him, "Not this one. I've used these test strips for 7 years and I only show bleeding like this with an infection." He again refused antibiotics and I went home really sick. Fortunately, I insisted on a culture. I suffered at work through the next week, was so sick from pain & not sleeping, my coworkers were really worried. When the culture came back, it again showed klebsiella. The doctor was surprised, but confirmed infection & gave me Cefpodime for 5 days. But again, told me that "IC patients always get fixated that they can tell when they have an infection, but they actually can't tell the difference."

    I was exhausted and sick for 3 weeks, but fortunately, I had vacation, so only lost 4 days of sick leave. After the antibiotic, i again felt good for almost a week, then the symptoms started rising again. Again, I told the doctor that my UTI wasn't gone, please help. He said, "No. There's no way your infection survived the antibiotic." My pain got really high and I ended up going to the ER. They told me there, the dip test was fine, so no infection. But 4 days later, the ER called me & told me I have another klebsiella infection. Went back to my doctor, he said no and that ER's overdiagnose UTI's, refused to give me an antibiotic again. Pain was getting worse, so he sent me for 2 CT scans looking for anything that could be harboring bacteria (like kidney stones). CT scans came back perfect, no problem. Again I asked for an antibiotic. He said "No." Finally 5 days later, I left another urine sample at the clinic and it came back with klebsiella again. The urologist prescribed me Cefaclor for 5 days. Today is Day 1 on it. He wants me to have another urine culture on Thursday to make sure the klebsiella is gone, then he'll put me on a low dose Cefaclor for awhile to make sure it doesn't come back again.

    Between the loss of sick days, urologist visits, ER, CT scans, airline tickets value - this stupid UTI has now cost me $1800.
    I've been sick for 7 weeks now. When a $5 antibiotic could have taken care of this had it been prescribed soon enough. So angry.
    Yesterday, I told the doctor that if this happens again, we cannot handle it this way, that I simply can't afford it. He didn't seem to understand that. So then I told him that I'm lucky = I have insurance. I have an emergency savings account. I had sick leave to use, and was very lucky for the vacation time off from work or I would have lost 21 days of work instead of 6. But if he does this to an uninsured patient having to pay full price with a lower income, no paid time off, these kind of bills could cost someone their rent and grocery money. I don't think he understood this either.

    I'm sorry if I seem to be ranting. I'm so aggravated. I don't feel well and I'm forcing myself through work each day so I don't lose any more days. Today my pain is low, but I'm so tired...

    If you pray, could you please pray that this infection is cured? That my doctor will begin to listen to me and respect my opinion about my own body? And if that doesn't happen, that God can find me a new doctor? That I can continue to work? Thank you.... Kadi
    Kadi

    -------------------------------------------------------------
    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    ------------------------------------------------------


    New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
    Source - Pinterest
    "


    Current treatments:
    -IC diet
    -Elavil 50mg at night
    -Continuous use birth control pills (4-5 periods/year)
    -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
    -Pyridium if needed,
    -Pain medicine at bedtime daily, as needed during the day several times per week
    -Antibiotic when doing an instillation to prevent UTI
    -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
    -Dye Free Benadryl 50 mg at bedtime
    -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
    -Managing stress= VERY important!
    -Fur therapy: Hugging the cat!

  • #2
    Re: Need prayers please...

    Consider it done! It can be so very frustrating when doctors don't listen. I hope you feel better soon.

    Sending gentle hugs,
    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      Re: Need prayers please...

      You will be better! Here is what worked for me, I am not IC but I do have bladder issues. Probiotics daily, D-mannose powder during a UTI, water and asparagus. Please let me know when you are feeling better.

      Comment


      • #4
        Re: Need prayers please...

        Hello,

        I'm doing a little better, but still very tired. My mom & I went together to the doctor on Thursday, I needed a second set of ears and for her to speak for me if they continued to not seem to be listening. Seems the problem is I'm allergic to so many antibiotics now that the doctors are very hesitant to prescribe them unless the UTI cultures are screamingly positive, regardless of my symptoms. At this point, the tests are now positive and my pain level was off the chart, so I did get a prescription for cefpodoxime for infection dosage for 7 days, then the doctor says I'll be on it at a lower dose for 6 months to prevent this from happening again. The doctors say the downside to this is if I develop a resistant bacteria, or get a new infection because the antibiotic will kill off the good bacteria in my system as well as the bad, so I have to take a probiotic orally & vaginally.

        I still wonder if I had to go through 8 weeks of hell to get to this point, but it looks like I have a workable medical course of action now. I hope I've not burned my bridges with this doctor irreparably. I did give a pretty ****** off letter to the clinic, asking why I had to go 8 weeks this sick. Today I had no significant bladder pain & did not need any daytime Norco. That's progress. I do think the doctor is the best for IC in the area, so I'm not wanting to change at this time.

        Now, I just have to pray to not get sick any more this school year, every day I miss from work now = loss of income on that month's check.
        Stressed.
        Last edited by kadi; 10-27-2013, 06:36 PM. Reason: spelled the antibiotic wrong the 1st time, now corrected
        Kadi

        -------------------------------------------------------------
        I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
        ------------------------------------------------------


        New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
        Source - Pinterest
        "


        Current treatments:
        -IC diet
        -Elavil 50mg at night
        -Continuous use birth control pills (4-5 periods/year)
        -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
        -Pyridium if needed,
        -Pain medicine at bedtime daily, as needed during the day several times per week
        -Antibiotic when doing an instillation to prevent UTI
        -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
        -Dye Free Benadryl 50 mg at bedtime
        -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
        -Managing stress= VERY important!
        -Fur therapy: Hugging the cat!

        Comment


        • #5
          Re: Need prayers please...

          feel better soon. You will get through this. If the Dr refuses to listen to you in the future, follow your gut and get a second opinion. Doctors are not the be all end all. They get it wrong and often. It took them over 15 years to catch my Lyme Disease. As a result, a lot of damage is done that can't be undone. I know it's exhausting being sick and needing to find help...but Always follow your gut. It does get confusing for us IC'ers sometimes because we often flare after UTI's. But in the end you know best. Hang tight. Many prayers and warm regards.
          Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa

          Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.

          Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.

          Comment


          • #6
            Re: Need prayers please...

            I've been thinking of you and am so glad you are feeling a little better today. I'm glad your mother went with you --- one of my daughters goes with me to my pain center and oncology appointments --- that way we have two perspectives on what is being said. We are both fortunate in having caring family.

            I'll keep you in my prayers.

            Love,
            Donna
            Stay safe


            Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
            Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

            Have you checked the ICN Shop?
            Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

            Patient Help: http://www.ic-network.com/patientlinks.html

            Sub-types https://www.ic-network.com/five-pote...markably-well/

            Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

            AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

            I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
            [3MG]

            Anyone who says something is foolproof hasn't met a determined fool

            Comment


            • #7
              Re: Need prayers please...

              I'm so sorry you are going through this. Consider it done. I'm glad you are feeling a little better. I hope it continues!
              ----------------------------------------------------
              My blog on IC, adoption, and academia: the garlic whisperer

              Diagnosed Jan 2013. Currently taking:

              200mg Elmiron morning and night
              25mg Elavil at night (no drowsiness or weight gain)
              culturelle in the morning
              SLIT drops for allergies (environmental) 3 drops/night under the tongue
              zyrtec 24 hour nightly (recommended by uro)
              Instillations 3x/week: Parson's Solution
              uribel and prelief as needed

              Also took Desert Harvest Aloe (3 in the morning and 3 at night) for a year and had great luck.
              No longer need them, so I only take them during flares.

              Comment


              • #8
                Re: Need prayers please...

                This used to happen to me all the time. Finally I changed Dr's and he found out I have very low immunity and when I get antibiotics I usually need double the amount of days on it than other people do to kill off the bug.

                All my urine samples are cultured, not just decided by the dip, treatment is decided on how I feel, if I feel really crummy I get treated while waiting for the culture.

                I agree with you I can tell the difference between a flare and a UTI. Flares don't usually cause Temps.

                If it happens to you again you can ask to have a blood test, have you White blood cell count tested if it is high then you are fighting an infection, and even if it is not a UTI you need an antibiotic to treat it.

                An untreated UTI can spread to your kidneys very fast and can become very serious very fast.

                If it is an option for you I would change Dr's.

                My Dr. wrote across the front of my file, that if I come in saying I have a UTI, and want antibiotics for it I am to be treated for it. But your problem is it is your primary Dr. that is saying no.

                I feel for you, you might want to ask to have you immunity tested, finding out mine is very low to none existent has really changed how DR's treat me, I used to always spend months trying to get rid of UTI's, now when I get one they bring out the big guns right away.

                Good Luck MG
                My are with you all. May you all find a way to peace and joy in your lives.

                Comment


                • #9
                  Re: Need prayers please...

                  I am so glad you are doing a little better now. God can provide comfort and healing during difficult times. I have had you in my prayers and hope you continue to improve each day.

                  Comment

                  Working...
                  X