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  1. #1
    ICN Member massagedoula's Avatar
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    Question Leukocytes in urine...should I take Macrobid?

    Hello everyone,

    I have been in intense pain for the last 2 weeks. I thought it was a bladder infection intially and went to the gyno who said that there was no infection---just a trace of blood...and she thought it might be IC. I am open to the possibility, but this pain came on suddenly and feels exactly like a major UTI, which I used to have when I was a teen. I am waiting for my urologist appointment, which is in a few weeks, and nothing helps, its only getting worse, actually.

    So...I bought urine analysis strips like they use at the Doctors office, and then it showed up that there were leukocytes in my urine. Now, I know that is a sign of a UTI, so I brought it into the gyno's office, who were not happy about me coming in and questioning their diagnosis, I think. They took another urine test from me and confirmed the leukocytes and blood trace. they said that it was "probably not a UTI because there was no nitrites." I think that I looked so sad at that statement that they gave me a perscription for a week of Macrobid anyway. So now I don't know what to do. Should I take the Macrobid? If it is IC, and not a UTI, will it make my symptoms worse? (They are so bad already.) But...I did do some research and found out that not all bacteria create nitrites, so maybe the WBCs in my urine do mean and infection, and this is all a horrible UTI and not IC.

    Can you see my problem? On one hand I take the Macrobid which I have never taken before and dont know how I will react to it, and if it will make me worse or better...or not take it and risk that this was all a UTI, and possibly make it a super bad UTI by not taking anything to kill the bacteria...

    Can anyone PLEASE give me advice on this? And please don't tell me to ask the doctor, I do not have a primary care doctor, and the gyno basically left it up to me...and I don't know what to do!!! I feel very alone right now and this is a big decision for someone like me who is in such pain to make, because of course I want this to be an easily treated UTI, but if it is IC...I dont want to hurt it. I already have been treating myself as if I have IC, gone on the diet (which has shown no affect) started pyhsical therapy for my pelvic floor, gone to the acupuncturist, and am takign prelief and marshmellow root tea. Nothing is helping and I am getting worse and worse, which is why I think maybe it is a UTI and not IC...that and the leukocytes...

  2. #2
    ICN Member
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    Dear Massagedoula,

    I can't tell you how many times I've been in your position with the RBCs and WBCs (red and white blood cells) in urine, with no nitrates or bacteria! It is truly very frustrating, because it isn't a true UTI but there is something going on. What have I done in those cases? Well, sometimes I just ride it out and sometimes I take antibiotics. I think the RBCs and WBCs are common for ICers and I don't know what it means, other than something is wrong with our bladders and no one knows what it is or what to do about it. I wish I had answers, but then I would be winning big prizes in medical research! I have had good luck with Cipro, but I have come to the conclusion that it is because it has anti-inflammatory properties that make the bladder feel better, rather than that there are hidden bacteria. There are folks out there who firmly believe in the hidden bacteria theory, tho. I guess what I would do in your case, since you don't want to experiment with a new drug, Macrobid, is ride it out best you can and see if this flare passes. I resort to pain meds. I'm sorry you are going thru this, I really "feel your pain", that's for sure. There's nothing more painful than having something so uncomfortable going on, and on top of that, the medical world knows nothing about how to help, and we are forced to fall back on our own selves or a message board. Wish I knew more.

    Diana.

  3. #3
    ICN Member massagedoula's Avatar
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    Thank you SO MUCH for your reply. It was all I wanted, just to hear the story of someone who had been in the same situation...I came to a similar conclusion as you did, actually, that I would not take the Macrobid unless I started showing an infection. So...It looks like raised levels of leukocytes in urine is a symptom of IC, maybe?! This is just so strange to me. I am still waiting for my 3rd urine culture to come back. But its so strange how everyone on this site keeps saying "trust your doctor" because I feel that the doctors are not giving me any answers or any solutions. It will be up to me now to call their office tomorrow, where I will speak to a receptionist that will tell me she will call me back, and then I will have to keep calling to get my results back, which is what happened last time. Then it was negative, but I am ony speaking to the receptionist, so I cant ask her wht I should do because she knows less than me! It is so frustrating. I am going a whole oter route this Friday. I have an appointment with a Naturopathic Doctor, and I hope that she will be understanding, if so, I will ask her to be my primary care...

  4. #4
    ICN Member vm's Avatar
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    Please forgive those who say check with your doctor. In terms of liability we have to say that here. We would love to be able to answer so many tough questions, but we really are told to direct those types of things to the doctors. We are all just volunteers here or people seeking support and could easily give out wrong information. We aren't trying to be difficult, just following the rules.
    Kim

    Diagnosed August 2001

    Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


    Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

    My IC story: http://www.ic-network.com/patientstories/kim.html It's very outdated now. I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

    *****************************

    “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

    “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

  5. #5
    ICN Member Katrina's Avatar
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    To answer your question....some people find help from antibiotics even when all they have is IC. Many times I had low ammount of bacteria...so low doctors thought I shouldn't be bothered by it but since I was would give me a presciption for an anti and leave it up to me to take. It usually helped me feel better but delayed the correct diagnosis and correct treatment. Always ask for a culture when a urine analysis is done!
    Faith, Hope, and Love,
    Katrina


    I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back! My hope story http://www.ic-network.com/patientstories/katrina.html
    http://mandksales.net
    IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    or find me on facebook http://www.facebook.com/kat671?ref=profile
    Be the Miracle! & Pay it Forward!

    carmelann@charter.net please contact me...I am here to help!http://health.groups.yahoo.com/group/ICinWI/ if your from WI please contact me!

  6. #6
    Registered User Marlana's Avatar
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    Macrobid

    Hi
    I have had 3 uti's in 3 months. On only 2 of them did I test postive for nitrates...and there were very little of them in there..I went to the Dr for the pressure of this last one and there were no nitrates but leukocytes but the culture from the lab was positive for an infection. So my point is, that maybe you are as sesitive as I was to the first sign of infection and caught it before it went full speed ahead. I was on macrobid and felt much better within a week or so. Trust you instincts is the best advice I can give you. I hoep you feel better very soon.
    All my best,

    Marlana

  7. #7
    Registered User anxious one's Avatar
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    Did the doctor do a culture?? I have been in your position MANY times, both pre IC diagnosis and after. In a flare I frequently show up blood and white cells. My dr gives me a prescription for an antibiotic (which I can take or not- it's up to me and the longer you have IC the more you begin to tell if it IS an infection or not) then I wait for the culture result- about 24 hrs. At worst if it is NOT a UTI (99.9% of the time) I have only taken antibiotic for 24 hrs. I have only ever had one true UTI and that spiralled downwards so fast I was in hospital within 12 hours of the symptoms coming on.

    You are not alone here- everyone has been where you are and it is scary and frustrating. Take heart and be firm with your doctors- ALWAYS request a culture.

    Hugs,

    Sara
    Sara- 26 year old mum to Claudia (31.10.01- 4 going on 14!!) and baby Alexander (06.01.06). IC patient since horrible UTI 2003...

    "Animals are my friends... and I don't eat my friends."

  8. #8
    ICN Member massagedoula's Avatar
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    My culture came back today and was negative...I guess I did good by not taking the antibiotics..but oh, how I hoped this was only a UTI. So I guess I have antibiotics now stored away if I ever get a REAL UTI.

    Why do ICers have Leukocytes in their urine? Does anyone know the reason for this???

  9. #9
    ICN Member Katrina's Avatar
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    Well with the why I have two guesses. Leukocytes are white blood cells so my guesses are either that IC is a bacterial infection that is indectable at this time or some kind of infection that indectable at this time and bodies are trying to heal us but can't. Or that IC is auto immune and our attacking us.

    I personally think IC for most of us is connected to a problem with our immune system....a weakened immune system that is with IC is either dumb and attacking us or is trying to attack some infection but can't win the battle. Either from a lot of infection doing dammage to our bladder wall or from something undectable still doing dammage to our bladder wall.

    Anyway....the why's are not usually easy questions but those some guesses.
    Faith, Hope, and Love,
    Katrina


    I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back! My hope story http://www.ic-network.com/patientstories/katrina.html
    http://mandksales.net
    IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    or find me on facebook http://www.facebook.com/kat671?ref=profile
    Be the Miracle! & Pay it Forward!

    carmelann@charter.net please contact me...I am here to help!http://health.groups.yahoo.com/group/ICinWI/ if your from WI please contact me!

  10. #10
    ICN Member ICLori's Avatar
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    I always have white blood cells in my urine cultures too, even when there aren't alot of bacteria present. Thanks, Katrina, for the explanation about why that might be so.

    Blessings, Lori

  11. #11
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    You shouldn't have to guess about an infection

    Many of you may recognize that I have posted here before about the fact that there are better culturing techniques than the 24 hour agar plate used by almost 100% of labs today. It is not adequate enough to find all possible bacteria that can find their way to the bladder.

    Many patients have had more thorough culturing done by Dr. Fugazzotto, retired microbiologist, or by one of a couple of labs near Washington, DC, that will do a broth culture. Sometimes Dr. Fugazzotto will let a culture grow out as long as a week or more in order to find hard-to-culture but pathogenic bacteria. Then he performs a sensitivity test to find which antibiotics are best to treat the species. There is no guessing. Naturally the labs and insurance companies would like to think a quick, easy agar plate culture will tell the story, but if a patient continues to have symptoms that are chronic or keep returning, the doctors should begin to demand that patients need better cultures. These symptoms are not in our heads but the medical/scientific community has not researched current culturing techniques to be able to be able to say they are 100% reliable. Some MDs actually do their own culturing.

    We have been doing a research project here and have found that a majority of IC-diagnosed patients have Enterococcus. This responds to the right antibiotic but it will take longer than a two week course which the doctors are used to prescribing.

    It will take patient pressure to force doctors and labs to stop guessing and do a truly adequate job of culturing. Much pain, suffering and dollars could be saved in the long run!

    Martha F

  12. #12
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    My GYN has his own lab and grows his agar cultures at least 14 days. He'll also test for things that won't grow on agar, like ureaplasma and mycobacteria. He was able to find infection in my bladder when others couldn't (and I had gone to many MDs). He treated me with IV, antibx bladder irrigations, intravaginal, and oral antibiotics and I'm much better. It took awhile for me to know I was getting better as the antibiotics were irritating my bladder, but I was fortunate that I only had to be on for a few weeks (I think because his multi-route technique is excellent -- without the IV and irrigations I would've had to take oral antibiotics for at least 4 months). He also treats sex partners to prevent recontamination if necessary.

    Most don't have an MD near them with his/her own lab, but I encourage people to at least ask their MDs to test for ureaplasma and mycobacteria (AFB culture) in addition to the usual agar cultures. The best cultures are broth and PCR cultures -- these often show pathogens when agar plates yield false negatives. I'm an infectious disease RN -- if people have questions feel free to send me a private note.

  13. #13
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    Interested in seeing Dr with labs facilities

    Hy : I have a mild case of ic and recently was treated in my country with doxycicline, after i came back today I had a urine test and it came out positive for leukocytes, can you please tell me the name of your doctor I will go anywhere to see him, cause I do believe I have some undetected bacteria and dont believe in sending urine over the mail also the iv therapy is much faster. Thank you so much.

  14. #14
    ICN Member Katrina's Avatar
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    to the ICN srh242@nyu.edu
    Wish I could answer your question. You may have better luck starting a new thread with your question.
    Faith, Hope, and Love,
    Katrina


    I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back! My hope story http://www.ic-network.com/patientstories/katrina.html
    http://mandksales.net
    IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    or find me on facebook http://www.facebook.com/kat671?ref=profile
    Be the Miracle! & Pay it Forward!

    carmelann@charter.net please contact me...I am here to help!http://health.groups.yahoo.com/group/ICinWI/ if your from WI please contact me!

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