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Posts: 4
Reply with quote  #1 
Hello all,
Firstly I am a Christian and understand that not everyone is a believer, but my posts will probably include somethings about my faith. I understand if you decide not to read or respond.
In July of 2015 I was prescribed Levaquin and Bactrim from what my family doctor suspected was a skin infection on my face. I now know that it was not. I had a terrible reaction to both antibiotics and many of the symptoms actually set in two months after the dosage(of which I didn't finish because Of their toxicity) I had never before then ever had a reaction to any antibiotic, but prior to my prescription I had began a regimen of taking probiotics, vitamin C and a few other supplements. So eventually I recovered, praise God from the toxicity of the meds 5 months later. But as I began to see much improvement I begin to think that my urine smelled strange. It didn't stink coming out and into the toilet, but if some perhaps got on my underwear and I didn't dry myself well enough my underwear would wreak. That was my initial symptom. That was around Feb 2016. I'd completely recovered from toxicity right before in Jan of 2016 and also began a regimen of testosterone to get some energy back. Had tears that had shown my supply was depleted. So after trying to really figure of my hygiene was just poor or if my urine was really smelly in May of 2016 I got another symptom-urgency. I knew that it was a UTI and gave a urine sample that came back positive. I assume it was cultured and my gyno called me in Bactrim. I tried the antibiotic again and of course I broke out and had a horrible go after just one tablet. My gyno told me that there was another antibiotic but it would be by injection and I would have to go in every week for three weeks. The injection was Rocephin. I did well or as well as Incould with little side effects. During treatment all symptoms went away. Three days after treatment the smell came back but no urgency. I called in to the gyno who wanted another urine sample. It came back negative. I was puzzled but because Inwas told that there was no infection, I thought maybe I just produce smelly urine. I started wearing panty liners and I mentioned it to my GP in April of 2017. She wanted a sample. It came back negative and the culture didn't grow anything however there was trace blood of which they said was probably minor so in 6 months time leave another sample and we'll go from there. I did. There was no infection . Culture didn't grow anything but blood was there once again. In Jan 2018 I was referred to a urologist whom I gave all the history to. I told him about the smell and the panty liners and the fact that I was stopping and going and had a weak stream at times, also having to press down to urinate (which I'd done since a teen). He said he couldn't find blood in my urine and didn't know why I was having to push down to release urine but since I'd done it for all of those years it was likely nothing and I was healthy. So a week later I get this burning in my urethra that I have never in life felt. I go to the toilet and the urine is foaming. It smells like sulfur. That smell was worse than what I'd been thinks was smelly. I go back to my gyno who takes culture and then a week later prescribes Amox/cav for a 7 day course. I take it well and the symptoms leave but return on day 4. I call in and report it and am told to drink plenty of fluids to flush my system and finish the course. I do but am leery because I know my body. Instead of goling back to the gyno I call in to the urologist who wants a sample. This is 3 days post Amox. The culture comes back Proteus Mirabilis. That culture and specimen changed my life. Because I am allergic to the drugs it was most sensitive to (is what I was told without me seeing the culture report) I only had two options. Take a medicine that I am allergic to with Benadryl and tough it out or get an injection of Gentamiacin over the course of several days. I read up on Gentamiacin and am horrified. I finally decide, writhing in pain from the infection about four days later to take the Bactrim with Benadryl. So I was praying that I could just hang in there and get through the course. At least three days. I didn't realize the urologist prescribed me 800mg and not the customary 500mg. Of course I was in the ER about eight hours after the first tablet. The ER doctor want happy. He takes a sample and tell me the dipstick says I didn't have an infection. So I tell him the story. He looks at the report that I pulled from my urologist office and the list of drug sensitivity etc. He's stumped and sends me home with nothing because he didn't think Gentamiacin was appropriate especially with nothing on the dip stick.
I contact my urologist after a few days and tell him that I will agree to the Gentamiacin. I get to the office and they have to do a kidney function test and I freak out and leave. I'm in major pain and urinating every ten minutes. I stay that way for a couple more days and give in and go back to urologist who now, himself seems puzzled and not really adamant about the injection. He says I can't give you an injection it has to be via IV. After a few days I agree to it and start the most horrible antibiotic treatment almost ever. It was a five day course and the side effects, I am still dealing with. My urologist explains that Gentamiacin is my "last ray of Hope" which I feel is an awful thing to say and I have been in constant prayer. I don't believe it's my last Ray of Hope. Any way, after the 5 day course I am fatigue and pain in my back and sides are intermittent. I go back to the urologist. They say my urine "looks" better than it did. But there are white blood cells. They will send it off for a culture. And tomorrow I will get an ultra sound to check for kidney stones. He also suggests that I could probably try Cipro in the mean time because I actually had taken it before without any side effects, even tough it is a cousin to Levaquin. Basically he is saying If I can't take Levaquin, Cipro or Bactrum and Gentamiacin has failed to knock it out he's not really sure what else to do except look for kidney stones. I am stumped... I am praying to God to deliver me from this nightmare. Why are my back and sides still hurting? Why, if Proteus Mirabilis was sensitive to Gentamiacin am I still having trouble and also recovering from its horrific side effects. I never really hear anyone speak a lot on managing or curing Proteus Mirabilis. D-Manniose is for E. Coli. Most other natural ways are for E. Coli. I've even heard that it's better to have acidic urine for proteus than alkaline because they create their own alkaline environment where they thrive. Any suggestions?

Posts: 1,096
Reply with quote  #2 
I’m so sorry you have experienced such strong reactions to medications and have to deal with a UTI on top of all of this.

We are a UK based organisation and cannot comment or advise on prescribed medications. I would say that it is now known that infections are polymicrobial (more than one bacteria) so it could be that whilst proteus has been identified it may not be primarily causing all the symptoms you are experiencing and another bacteria which is resistant to what you have been given by your Dr may be resistant to the meds. There is a laboratory in the US where more detailed testing is offered (Microgen DX) but you must be referred by your Dr to send off a sample.

In terms of natural antibiotics, the following may provide some advice but as you appear to be struggling with an acute infection that could be affecting your kidneys at the moment I would be guided by the medical profession.

As Proteus is a gram negative bacteria it should respond to D Mannose. Are you taking a high enough dosage i.e. a teaspoon for 48-72 hours every 2 hours including at night?

In terms of support in the US, the following organisations may be able to provide further information.

Interstitial Cystitis Association (ICA)
100 Park Avenue, Suite 108A
Rockville, MD 20850 USA
Tel: 800-HELP ICA (800-435-7422)

Interstitial Cystitis Network ICN (National)
4983 Sonoma Highway, Suite L
Santa Rose, CA 95409, USA
Tel: 1-707-538.9442

Posts: 1,863
Reply with quote  #3 
Hello Trenika
Welcome to our Forum, I hope you will find much to support you.

As you will see Moderator Susan has given you the very best and latest to assist and guide you.

We are indeed UK based, but you are Welcome to contact  and join BHUK, The Office( info at top of page) and we will be pleased to offer further advice and send you or joining pack and  any further relevant information that may assist you.

Re your smelling Urine This link may also help.

Kind regards and do keep posting , we will always listen.



Verified BHUK Member
Posts: 91
Reply with quote  #4 
Hi Trenika.

My heart goes out to you. I have no medical experience therefore much of which you have spoken of is alien to me.(My condition was recurring UTIs. Nothing in comparison to that which you refer).  However, your decision to join Bladder Health UK is a great step forward. Here, as you will have ascertained, the moderators are well read and can give you so much information. 

I suffered 4 years with recurring UTIs taking a prophylactic dose of Amoxicillin each evening after having been with an excellent Urologist. I have been UTI free since end October 2017. My story is nothing in comparison with yours and I do sympathise with you.

Good luck Trenika. Keep praying. Through your prayers you were directed to Bladder Health UK my dear Trenika. Nothing happens through chance or coincidence. There will be a treatment/cure believe me.

I shall pray for you.

Do keep posting and chin up as we say here in the UK!!

Sending positive vibes and hugs.



Posts: 4
Reply with quote  #5 
Thank you for your kind words and prayers. As of late, my urinalysis shows white blood cells, but no infection. I still have pain. This morning there was a discharge but I'm not sure of the actual source. The doctors had pretty much written me off because the culture didn't grow anything after 48 hours. Now they sent me an email saying that they would like to catheter the urine for a culture. I'm not really familiar with that technique and was unsure if that would make the infection worse by pushing it further.... These are just my early morning ramblings after some very sincere prayer this morning. I can only look up! I am happy to be a part of the forum. Maybe someone will know more than I do. Thank you again.
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