Carrie’s Chronic UTI Story

Carrie’s Chronic UTI Story

Reading Time: 21 minutes

Carrie had only ever had a urinary tract infection (UTI) once before.  When she was 40, her second UTI refused to budge and her life soon became a revolving door of doctors and ER visits.  Suffering terrible bladder and urethral pain and becoming increasingly unwell, she battled to hold herself together and manage her day-to-day life with three small children.   Carrie knew her original infection had never fully cleared and it had become an infection like no other.  She researched until came across a different form of testing and a doctor in the United States who was prepared to see past the negative culture tests and treat her for a chronic, embedded UTI.   She is now close to being symptom-free and is back to living life as a happy, busy wife and mother.  Read how Carrie fought her way back to good health.

 

My UTI nightmare began when I was 40

My nightmare started on April 5, 2019.  I was 40 years old.  I had been on my menstrual cycle and had a leak as I was out and about picking up my pre-school aged kids from school.  I had a pack of baby wipes in my purse and used those to clean myself up until I could get home to shower.  About 48 hours later, my hell began.  I had developed the worst UTI of my life.  There was something evil in those wipes.  I didn’t have frequency or urgency… but I did have HORRIFIC bladder and urethra pain.  I had burning in both my bladder and urethra.  It felt like a knife was lodged in my bladder.

Unlike many sufferers of chronic UTIs, I had only ever had one other UTI in my adult life, six years prior.  I had used a hot tub at a resort in a mountain town in Colorado and I believe my infection came from there.  Regardless, it cleared after two rounds of short-course, full-dose antibiotics.  Interestingly enough, I didn’t have a positive culture after the first course of antibiotics failed…but the second course (Ciprofloxacin taken for five days) eliminated the infection.  I was clear and free from any issues until six years later.  Even throughout my four pregnancies I never had any UTI issues at all.  I was seriously blindsided by what happened with this current infection.

At the very first sign of my UTI, I called a home health team to come and do a home visit because my husband was travelling out of town.  I have three very small children (all under the age of five) and I didn’t want to drag them all to my OBGYN or to my Primary Care.  The home health nurse practitioner was very nice but just prescribed an antibiotic and didn’t even culture my urine.  This was a big mistake!  I wish I could have had that first urine cultured!  However, she assured me that most of these infections are caused by E. Coli and that it should be all clear in the next five days.  She was VERY, VERY WRONG.

I didn’t have a positive culture after the first course of antibiotics failed…but the second course (Ciprofloxacin taken for five days) eliminated the infection.

 

My life had become a revolving door of doctors and ER visits

What took place next was a tale spin of revolving doctors and ER visits as I tried to figure out why I wasn’t getting better.  To my horror, all of my urine cultures were coming back negative.  I never had urgency or frequency, I just had DEBILITATING PAIN.  I had burning and stabbing pain in my bladder and it felt like something was eating away at my urethra.  It was horrific!!!

After three rounds of antibiotics (and about three weeks into my nightmare), my OBGYN referred me to a urologist stating that she was concerned I had developed interstitial cystitis (IC). Instinctively, I knew this wasn’t the case.  The symptoms that I felt never cleared from the initial infection that occurred after a known incident with the wipes.  I was experiencing the exact same pain from when it all started.  I KNEW I still had the original infection!  I had zero doubts about it regardless of what my doctors were telling me at the time. I spent 10 years as both a pharmaceutical and medical device surgical sales rep, so I wasn’t medically ignorant.  And due to my work history, I was very comfortable questioning and challenging doctors.

 

I had an infection trapped in my bladder! 

It was about this time that I started searching the internet for UTIs that were culture negative.  It was during this 30-minute search that I came across the Live UTI Free website and learned about embedded infections.  I KNEW I had discovered what was wrong with me!  I was appalled and angry to learn in my very brief search that up to 60 percent of the standard urine tests that are done routinely in doctors’ offices are falsely negative.  I can’t wrap my mind around how these tests are still being used as a standard of care in managing women’s health.  This, to me, seems unacceptable.

Immediately, I called MicrogenDX and ordered a urine DNA test kit* to be sent to me overnight so I could get my urologist to use it at my next appointment.  My urologist was willing to try the DNA testing.  We did the first test and it came back with three pathogens.  I had never been so excited to get such news because I was so glad to prove what I knew to be true.  I had an infection trapped in my bladder!  My urologist selected a recommended antibiotic from the report and gave me a short course of full dose antibiotics, the same treatment for an acute UTI.  I did a 48-hour washout (a short antibiotic and supplement free period to get everything out of your system) after finishing the antibiotics and retested again.  This next test showed entirely NEW pathogens.  I was shocked!  I asked my urologist how this could be, and her simple answer was that I must have re-infected myself!  I immediately questioned the urologist’s hypothesis as I had just been on antibiotics and the pathogens shown on the second DNA report showed susceptibility to the previous antibiotics I had just been on!  She said that she had no other explanation….

I went home and researched these infections again and discovered BIOFILMS.  I did one more DNA test with this urologist and she didn’t even call me back to treat me with the NEW pathogens that had popped up.  She refused to believe the reports at this point and refused to give me antibiotics.  Instead, she wanted to prescribe me over-active bladder medication and start going down the IC diagnosis route.  I refused both.  I did not have an over-active bladder or IC at all.  I had pain due to an infection, which was proven with DNA reports.  It was at this point that I knew I needed to find a different doctor, and that my urologist was going to be a dead end for me.

I was appalled and angry to learn in my very brief search that up to 60 percent of the standard urine tests that are done routinely in doctors' offices are falsely negative. I can’t wrap my mind around how these tests are still being used as a standard of care in managing women’s health.

 

I discovered a functional medicine doctor who consulted with Ruth Kriz on how best to treat me

All during this time, I was in TERRIBLE pain.  It was very hard to function but I pushed through for my kids.  It was the most challenging thing I can remember dealing with and I was in the worst pain of my entire life.  I rated my pain to be 8/10 on most days.  Even while on antibiotics, I didn’t get much relief.  In fact, some of them made me feel WORSE.  This was a very confusing time for me and I had to really tune in to my body in order to understand what was happening.

I did a lot of researching during this time and discovered Team Inspire, Vancouver UTI Girl, Professor Malone-Lee, Ruth Kriz and the Embedded UTI Support/Advice Facebook group.  It was through these places, along with the Live UTI Free website, that I learned about embedded infections and biofilms.  I started to learn that treating these infections required biofilm busters.  It also became clear to me that pain would be part of the healing process.  I learned that when the antibiotics were working, the body usually produces a reaction to the bacteria dying which causes inflammation and more pain.  Pain being present during treatment was showing that the medication was working!  Learning about the nature of these embedded infections and treatment was a game changer for me.  This helped me to fight and embrace the pain, in order to clear out many layers of biofilm infection.

About two months after my infection started, I transferred all of my care over to a functional medicine doctor.  She was very willing to work with me using the DNA tests.  It was also during this time that I discovered Ruth Kriz.  Ruth had officially retired by this time and wasn’t taking any new patients.  However, she graciously offered to consult with my functional medicine doctor regarding my care and she did so without any charge at all.  Her consultation to my physician was one of the most generous and caring acts that I have ever experienced in my life!  I will forever be grateful to Ruth Kriz for her incredible generosity.

Ruth mentioned her protocol of DNA testing, treating with antibiotics for a minimum of 14 days and then retesting again after at least 48 hours off antibiotics.  This is known as TEST/TREAT/REPEAT.  She said she believed in long-term, full-dose antibiotic therapy, but only AFTER all biofilms have been broken up.  She said when she saw back-to-back DNA reports with DIFFERENT pathogens, that signified a biofilm is present.   Based on her treatment protocol, when a biofilm is present, long-term, full-dose antibiotics won’t work because the pathogens keep changing and the antibiotics chosen may not cover the new pathogen breaking through the biofilm.   That is why she uses the TEST/TREAT/REPEAT protocol.

Conversely, when she saw back-to-back DNA reports with the SAME pathogens, this signified a persistent UTI and usually the CORE of the infection.  The core is reached after all layers of the biofilm are broken through.  It is when the core is reached, that using long-term, full-dose antibiotics is necessary to really eliminate the persisting pathogens.  Ruth also mentioned testing for certain genetic markers, vitamin deficiencies (such as vitamin D), viruses, Lyme’s disease, mold or other issues (such as having breast implants), in order to see if there was a reason the body couldn’t clear infections easily.  Ruth also recommended biofilm busters.  This was very helpful in my healing.

 

Other approaches that helped support the treatment for my embedded UTI

After my consult with Ruth, I got busy.  I tested for anything and everything she recommended!  Everything came back CLEAR except for low vitamin D and the fact that I had breast implants.  In disbelief of a connection, I researched breast implants and bladder issues.  To my shock, there were hundreds of women who had developed tremendous bladder issues while having implants.  Once many of these women removed their implants, their bladder issues usually completely resolved within three months.  This finding was enough for me to schedule the removal of my breast implants and they were removed about six months into my infection.

I also started using Interfase Plus.  A woman on Team Inspire mentioned how she had cured herself using Interfase Plus in conjunction with her antibiotic therapy.  She warned that it was a painful process but encouraged me to push through the pain because I would come out the other side much better off.  I took the Interfase Plus on an empty stomach 30 minutes before my antibiotic.  Initially, I started with just one pill twice a day.  After two days, I increased to two pills twice a day.  Then again after another day, I increased to two pills three times a day.  The maximum dose anyone should take is two pills four times a day.  I couldn’t bring myself to take the maximum dose because I was in tremendous pain at the three times a day level.

To my shock, there were hundreds of women who had developed tremendous bladder issues while having (breast) implants.

Treating with a biofilm buster confirmed that I actually did have a biofilm!  I could almost feel them bursting open!  Much like the pain of a pimple popping.  It was sharp and fast and then it would be over.  I had one moment where I was putting shoes on my children in our laundry room and I had a “POP” feeling in my urethra that almost brought me to my knees!  I literally cried it hurt so badly.  However, once that pop happened, I have NEVER had urethral pain again.  It was COMPLETELY gone in that area.  In fact, I noticed the pain I felt in different parts of my bladder and urethra during the biofilms “pop”, never came back in those places EVER again.  I started to embrace the pain and I quickly realised the only way out of this hell was to fight through the pain.

In working with my functional medicine doctor, we also tried holistic approaches.  I did IV ozone therapy and spent thousands of dollars on several 10-pass treatments.  I believe these treatments helped my immune system but didn’t really touch the infection in my bladder.  Additionally, I did IV vitamins and even tried bladder instils from a compounding pharmacy that Ruth recommended.  However, after 16 days of instilling Vancomycin and Amikacin twice a day through a catheter, my bacterial load remained unchanged and I even picked up a new pathogen.  While I do believe the direct deliverance of EDTA (a biofilm buster) to my bladder did help break through biofilms, I quickly learned that bladder instils were not for me.  These were very disheartening treatments.

About five months in, I came to a place where I felt like I was spinning my wheels.  My overall bacterial load had come down.  I was feeling about 50 percent better than I had in the beginning, but I was still very much in pain.  I was doing the test/treat/repeat method over and over.  I had about seven back-to-back DNA tests that showed DIFFERENT pathogens on each report, which represented the fact that I still had biofilms present.  However, around five months I started to get back-to-back reports that showed the SAME persistent pathogens sticking around:  E. Coli, K. Pneumonia, E. Faecalis and L. Gasseri.  I couldn’t shake these, and they kept coming back on my tests.  I remembered what Ruth had said and knew that I had hit my core.

 

I learnt about a urologist in the US who was experienced treating chronic, embedded UTIs

It was around this time that I became an avid follower of Professor Malone-Lee in London and I joined a very active online support group called the Embedded UTI Support/Advice group, which had many members being treated using a treatment protocol based on research studies from the UCL Chronic UTI Research Group.  I was intrigued by the concept of needing long-term, full-dose antibiotics.  I bought a microscope and a hemocytometer counting chamber Professor Malone-Lee’s treatment protocol used and I learned how to do the white blood cell and epithelial cell counts.  This was so affirming to me!  This added tool gave me a feeling of greater control over my infection because I could actively monitor how my body was responding to my medication.  I also correlated my flares to an increase in counts.  All of this contributed greatly to my understanding of how to fight these infections.

However, I was in a bind because I wanted to travel to see Professor Malone-Lee for treatment.  But, travelling to London from Texas in the United States would have cost me $6,000 for travel alone.  Additionally, I have three small kids that can’t be without their mother for that long of a trip.  I was truly stuck because I didn’t know how I was going to get to see the Professor.  Out of desperation, I actually spoke with his office and attempted to book an appointment for a few months out because I knew I would find a way to see him if I was still struggling.

I clung to God during this time and prayed for a miracle and for guidance.  God delivered my miracle in the form of Dr Stewart Bundrick!  One day while skimming posts in the Embedded UTI Support/Advice group, I saw a doctor from the US commenting on treating these types of infections.  I was so excited to see that he not only believed in chronic, embedded UTIs, but that he was confident in treating them using a very similar protocol to the London professor.  I immediately booked an appointment with him.  He was six hours away from me, so it was a much easier travel prospect.

Carrie with Dr Bundrick (photo supplied)

At my appointment with Dr Bundrick, I was incredibly impressed with his approach.  He actually took time to listen to my story and symptoms.  It was clear that he cared about me as his patient.  He didn’t seem shocked by any part of my story and expressed frustration for me as I had ping-ponged back and forth between many doctors before arriving to him.  He didn’t rush me and tried to learn all my symptoms and issues.

What impressed me most about my hero, Dr Bundrick, was his response to all that I shared with him.  He was incredibly confident.  He reassured me that he had been treating these urinary infections for 25 years and has had many successes in overcoming them.  He mentioned he used to be one of the “bad” guys who only resorted to surgeries and procedures for the management of his patients.  He claimed that is the way doctors are trained in their speciality and that most urologists are primarily surgeons.  Dr Bundrick mentioned it wasn’t until he had several patients not respond to the standard procedures that he started to try new things.  It was during this time that he learned more about how long-term, full-dose antibiotic therapy was highly successful in eradicating these chronic UTIs.  Dr Bundrick is very similar to Professor Malone-Lee, in that he believes many people diagnosed with IC actually have very treatable, embedded bladder infections!

At my appointment with Dr Bundrick, I was incredibly impressed with his approach. He actually took time to listen to my story and symptoms. It was clear that he cared about me as his patient. He didn’t seem shocked by any part of my story and expressed frustration for me as I had ping-ponged back and forth between many doctors before arriving to him.

 

Also, Dr Bundrick was an early adopter of DNA urine testing.  He was one of the first to use them and has a great track record in working with the reports.  He placed me on two antibiotics based on my latest DNA and told me very straightforwardly to not come off of the medication for any reason unless he gave me the go ahead.  He said that we wouldn’t do another test for about six months unless I experienced a worsening of symptoms or new/different symptoms that persisted longer than a few weeks.  He set the expectation that flares would happen, but they would get less and less over time, and that the intensity of the flare would also lessen.

My recovery was coming along in leaps and bounds

It took about three weeks on his protocol and literally I woke up one day and was PAIN free.  I had ZERO pain!  I felt NORMAL for the first time in practically six months.  I was overjoyed!  For anyone reading this in the US, please book an appointment with the amazing Dr Bundrick, in Bossier City, Louisiana.  He will change your life.  He is an amazing man and not only is he brilliant; he is incredibly compassionate to the suffering that his patients are enduring. He is my life’s greatest blessing and I will forever be grateful to him because he gave my family ME back.  Being a patient of Dr Bundrick and following his guidance is what I believe brought me to my current state of 99 percent symptom free.

My pain free period lasted with ZERO pain for about eight weeks. During this time, I utilised something called the NDM protocol.  A group of other suffers in an online support group brought this protocol to my attention and I do believe it helped my healing.   Look into it at https://www.ncbi.nlm.nih.gov/pubmed/28882961.  I took D-Mannose (500 mg), NAC (100 mg) and Noni Juice (0.5 ounce) (from Amazon) twice a day.

Around nine weeks into my protocol, I did have a small flare (three on a pain scale of 1-10) and I did a 36-hour washout period of my medications so I could take another DNA test to see what was going on.  The results of the test blew me away!  ALL of my bacteria, except for L. Gasseri, were GONE.  I had never eradicated my core pathogens since this started. For the first time since all of this started, after working with Dr Bundrick and following his guidance, my test results came back fairly clear.

Now, there is a lot of controversy over the Lactobacillus species.  Some feel they aren’t pathogenic, whereas others say that they become pathogenic at detected amounts on the DNA test.  I personally believe they do become pathogenic due to my own experience with them.  I did have an increase in white blood cell and epithelial cell counts during my last small flare.  I believe it was the L. Gasseri acting up that was flaring me.  I haven’t treated that pathogen yet and I plan on adding an antibiotic that may be able to target it in the near future.  However, after my small flare that lasted for about a week, I went back to being completely PAIN free.  I had ZERO symptoms.

I just removed my breast implants about a month ago.  So, it is still too early to tell if that has impacted my bladder healing in any way.  I did need to have a Foley catheter during the four-hour surgery, so I will do another DNA test in the near future to ensure that I didn’t pick up any new bacteria from the catheter.  However, I am currently completely symptom free and have very low white blood cell and epithelial cell counts.

I am still on long-term, full-dose dual antibiotic therapy and will be for three to four more months at least.  Most likely I will stay on this therapy for a year, just to be safe.  I am traumatised by this nightmare infection and want to be sure I never have it come back.  If staying on medication a little longer gives that extra coverage of prevention, I plan on doing so.  Regardless, I am LIVING life again!  I am ME again!  I am the mother that I want to be again and the wife who can have sex again. I can drink Starbucks (not everyday because coffee was my worst offender, so I am afraid to push it—but I have a coffee about every other day); eat spaghetti, pizza, salsa, chocolate and anything I want!  I am not hindered in any way other than having to take medication twice a day.  This small annoyance is well worth the freedom it provides my life!

I am still on long-term, full-dose dual antibiotic therapy and will be for three to four more months at least. Most likely I will stay on this therapy for a year, just to be safe.

My gratitude goes to the following people who have been instrumental to my healing during this turbulent journey

  • Dr Bundrick  = A BIG THANK YOU
  • Ruth Kriz
  • Professor Malone Lee
  • Melissa Kramer (Live UTI Free)
  • Lexi Fei (Vancouver UTI Girl)
  • Joanne Mckinlay (Embedded UTI Support/Advice Facebook Group)
  • Jessica Price (Chronic UTI Resources and Support – US Based Facebook Group)
  • Kat Crowson (Chronic UTI Resources and Support – US Based Facebook Group)
  • Imelda Wilde (microscope guru/Chronic UTI Australia Incorporated)
  • Andrea RS (Chronic UTI Australia Incorporated)
  • The many fellow members of the online groups that have encouraged me and shared their helpful tips along the way!  I love you all and pray for your healing
  • My Heavenly Father for comforting me during the darkest times and guiding me to people who could help me!

 

Some websites and resources I have used along the way to learn how to navigate these infections

 

Here is a summary of what I have found to be important when fighting my infection

  • It takes long-term, full-dose antibiotics to eradicate these chronic, embedded bladder infections. Unfortunately, in my experience and observation of others, natural and herbal treatments alone won’t work.  Many have wasted months trying the natural route without success, only to eventually join the long-term, full-dose antibiotic bandwagon.  Don’t waste your days suffering unnecessarily.

 

  • Use probiotics but don’t take Lacto Gasseri or Lacto Iners. These tend to be more virulent and opportunistic towards becoming pathogens.  Also, if you see Lacto species showing up on your DNA reports, then AVOID those strains in your probiotics.  Lacto species should not be at detectible levels in your bladder.  These need to be addressed if you have them as they can become pathogenic at such levels and definitely can cause bladder symptoms.  I highly recommend Florastor daily with antibiotic use, in addition to a good all-around, adult, multi-strain probiotic without the above-mentioned strains.

 

  • Take a Diflucan weekly or every two weeks while on long-term antibiotics, as long as your antibiotic doesn’t interact with it. This will help keep yeast at bay.

 

  • These infections hurt as you are treating them. Symptoms can get worse in the beginning of treatment, especially when using biofilm busters.  But the pain is productive pain! Experiencing an increase in pain/symptoms while on a biofilm buster is a GOOD thing!  Embrace that pain and hang on.  Know that you will be likely getting better!  The pain is a sign that the bacteria are dying, and the biofilms are busting open.  These things need to happen in order to be cured.  Push through the pain and know it will let up.  After every round of biofilm busters and antibiotics, my overall baseline pain score lowered.  It was hell going through the treatment but when finished, I was SO much better.  The only way out is pushing THROUGH the treatment.  Push through these times and know it WILL GET BETTER!

 

  • These infections take TIME to heal. This is a hard concept to understand.  We are used to immediate results in our culture.   We can’t grasp the fact that these infections are so different from the standard, acute UTI that responds to a short course of antibiotics.  These infections are not even in the same category as those.  You need to set your expectations realistically from the beginning.  You need to buckle up and plan for six months to up to two years before you are free.  This helps you understand this is a marathon and not a sprint.  This hopefully makes the journey a little easier because you aren’t disappointed when it proves to hang on longer than you thought it might.

 

  • Find an EXCELLENT doctor and DON’T WASTE YOUR TIME trying to convince or get help from MORON doctors that don’t understand these infections. There are only a few doctors in the WORLD who are EXCELLENT.  Travel to see them.  Do whatever you have to do to get to one of them.  You are likely not going to “convince” your doctor to treat you differently than what they were trained to do, and they’re not going to believe you the “patient” might know more than them.  Currently, the only two that are recommended are Dr Stewart Bundrick in Bossier City, LA, in the USA and Professor Malone-Lee in the UK. Dr Bundrick is my HERO.  Additionally, Ruth Kriz has been a trailblazer in managing these infections, however, she is retired.  She is currently training physicians on her protocol and there should be more help throughout the US shortly.

 

  • If you aren’t noticing any improvement in symptoms after about two or three months on an antibiotic, take another DNA test and see the new results to confirm what is going on. You may have a biofilm issue and new bacteria are busting through that are not covered by your antibiotic.  Ruth Kriz, an expert on biofilm infections and treating embedded infections, says that if she sees two back-to-back DNA tests together in a fairly close time frame with DIFFERENT pathogens, this is a sign that a biofilm is present.  When that happens, you may need to switch up your medication in order to cover the emerging pathogens.  Biofilms are like layers of onions.  You have to get through all of the layers (and each layer may have completely different bacterial colonies) until you get to your core.  Your core is reached when you continue to see the SAME pathogens coming up on your DNA reports.  When you get to your core pathogens, it is ESSENTIAL that you get on LONG-TERM, FULL-DOSE antibiotics (and maybe a combo of two or more) and STAY ON THEM WITHOUT COMING OFF FOR ABOUT SIX MONTHS.  The reason for this is bacteria can replicate incredibly fast and then re-embed in the bladder, creating this viscous cycle that is nearly impossible to eradicate.  It is ESSENTIAL to keep antibiotics in the system to continually kill pathogens shedding through the bladder lining.  This breaks the cycle and will allow for your body to completely eliminate the bacteria.  This takes TIME to accomplish, possibly six months to a year or more.

 

  • Get your partner DNA tested also. Be certain you are not passing bacteria back and forth and use a condom until your tests continually come back clear.  This can really happen even though some urologists may disagree.

 

  • Consider adding in adjunctive supplements to your antibiotic regimen, such as: vitamin D, biofilm busters, D-Mannose, NAC, Noni Juice, probiotics, CoQu10, a multivitamin and Lauracidin.

 

  • Consider enlisting the help of a local functional medicine doctor to help manage your overall health as you are fighting these infections. Also get your complete blood count, liver and kidney panels run ever six to eight weeks or so while on long-term antibiotics so that you can ensure your body is tolerating the long-term medication.

 

  • Consider getting a microscope and a hemocytometer counting chamber. Learn how to do your own cells counts as Professor Malone-Lee’s protocol uses. If you are a patient of his, you can provide him with this very helpful data if you are long distance from him.  Regardless, if you are a patient of Dr Bundrick or another doctor, learning this assessment tool is invaluable because you can see what is going on when you are feeling a flare and it also helps you understand how your body is responding to the antibiotics you are on.  Additionally, seeing white blood cells and epithelial cells PROVES that you DO IN FACT HAVE AN ACTIVE INFECTION.  This affirming information really helps you push through to the only treatment plan that works (in my humble opinion), which is long-term, full-dose antibiotic therapy.

 

  • If all else fails with antibiotic treatment or if you are getting negative DNA reports, yet still are symptomatic, consider treating for Schistosomiasis and bladder parasites. These don’t show up on Microgen DX tests or Pathnostics.  Aperiomics can test for them, but they only detect what is in the bladder the very moment you submit a sample and parasites can hide unless it is an active period in their cycle. This makes it hard to rely on the Aperiomics result.  It is quite challenging to find a test for bladder parasites, but consider working with a functional medicine or infectious disease doctor (if you can find one to work with you as many refuse to see patients like us) to see if you may be dealing with a bladder parasite.

 

  • Join a Facebook support group such as Embedded UTI Support/Advice and/or Chronic UTI Resources and Support – US Based (if in the US). These people are going through similar issues and you can all brainstorm together. The support you can get while navigating through your infection is beyond valuable.

 

  • Stay positive. Focus on the PROGRESS you are making along the way. Look at how far you have come in terms of symptom management and severity.  It may take several months to start feeling better.  However, each month should bring greater relief once you start getting the correct help from your physician.  Celebrate the little victories and one day you will realise that you have achieved the BIG victory and are completely free!  God bless you all.  Hugs!

 

*Please Note:  There is no consensus in the scientific community on the value of DNA-based molecular testing in diagnosing chronic UTI.  Some UTI research experts are critical due to the current lack of understanding of the urinary microbiome and the inability to conclusively identify and describe the microbes responsible for health and disease.   We do accept that people improve under the care of practitioners who employ DNA testing to help guide treatment.   Therefore, it may be best used by experienced practitioners in conjunction with the patient’s history, symptoms and other tests.  As part of your own research into treatment options, please ask for evidence that a practitioner has experience and success using this approach and the cost involved in repeat testing.   In Australia, anecdotal reports so far show difficulties for people finding practitioners who understand the test results, and more importantly, have specialist knowledge in treating chronic UTI.  The repeat testing some treatment protocols require could be considered cost-prohibitive by many.  Although it is still early days, it is hoped that DNA-based  molecular testing will one day allow the identification of a personalised healthy urinary microbiome and inform future treatment options for UTI.  You can read more about UTI testing here.  To read our 2018 interview with US research scientist Evann Hilt from Loyola University,  please click here.  

 

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2 Comments
  • Sheila H
    Posted at 02:55h, 04 January

    Your story is mine! Our stories differ in time… I have been fighting this battle for quite a bit longer (15 years… maybe to to 20) (I must admit that I didn’t have your medical basis… I trusted my drs for way too long… nor did I have the very apparent baby wipe experience.) Our stories part at your finding of Dr Bundrick. I am calling him today.

    Thank you… thank you… thank you! I don’t know you but I have a vivid sense of who you are through this article. I love your soul

  • Jean M
    Posted at 19:52h, 12 September

    Hello Carrie,
    Thank you for writing this. I am one of the unfortunate men suffering with this disease. It has taken so much from me. i am hoping that targetted antibiotics will help.

    I started biofilm busters (interfase(without edta), biofilm defense and fibrenza) twice a day on empty stomach and believe they ate adding to my discomfort. Did they irritate your bladder and cause more symptoms?

    i am about to go on clindamycin per microgen test recommendation. I was wondering if you had better luck being on biofilm busters for a while before starting antibiotics.

    Thank you very much,
    Jean

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