Diane's UTI Success Story: Biofilm Defense Protocol
Hello bladder warriors, I'm writing an update on a patient colleague who is almost healed from her misdiagnosed Interstital Cystitis. It was a UTI all along from her 1 year UTI nightmare. My protocol is VERY SIMILAR to hers, so that is why I'm sharing this because I am on almost the same thing. Back then, my past post said I was doing very little, but over the last few months, I added more back, which is outlined in her story below.She is doing 2 more things than me, so I'll be picking up a few things from her into my protocol! I'll name her Diane to preserve her privacy. If you are in the Embedded/Chronic UTI Support Group, you'll find her post there (not as Diane). I've been on this long journey since 2018 as you can see on this blog. The ladies who have journeyed with me are healing, some have already healed faster than me (I am SOOO jealous). The ones who healed/healing are under Dr. Stewart Bundrick and Professor Malone-Lee / Matthew Malone-Lee. I think there are like now around 10+ girls who have healed and we all started this journey together (most of them started after me because they found my blog and then we became Facebook or Twitter buddies)!
Here is Diane's story, copy and pasted from the FB group:
My ONE YEAR UTI ProgressTHERE IS HOPE!!I want to start by saying that my life is no longer impacted at all by this UTI. My symptoms are so minor that I forget I have it. The PTSD that I have from it is going away more every day. It’s no longer what my husband and I talk about all day every day. For all intensive purposes. I’ll say that I’m 95% better. For me this means that my symptoms are so slight and that it doesn’t impact my life. I’ll say 100% when I am off antibiotics, completely symptom free and haven’t been on them for about six months. Here is my story:
First ever UTI January 2016. My only symptom is that it feels weird when I pee. This is odd to say. But just as I finish it’s like the pressure feeling during an orgasm. I have no idea what I was prescribed this time or for how long. UTI goes away, I get a yeast infection from antibiotics and I don’t think about it again for three years. I think this UTI is completely separate from my current situation.
UTI January 2019.
Tested negative and no antibiotics given. In time symptoms went away.
My UTI Symptoms: Cloudy urine, smelly urine, itchy at the tip of my urethra, urinating more often, slight cramping.
March 2019.
Tested negative and given 5 days of Cipro. Symptoms went away immediately.
June 2019
Used an online doctor. Given 3 days of Macrobid. Symptoms went away immediately. I know this time was brought on by sex.
July 2019
Used an online doctor. Given 5 days of Cipro. Symptoms went away immediately. This time I know it was brought on by sex.
September 13, 2019
Symptoms start. OBGYN gave me three days of Macrobid. Test came back negative but with very high leukocytes. Symptoms slightly better right away but come back with in few days.
September 19, 2019
Symptoms really ramping up. Urgency, cramping, itchy urethra. Clean catch sample negative still high leukocytes. Told I have a yeast infection. Test comes back that it is not a yeast infection. Still sent home with nothing.
September 22, 2019
Symptoms start to become horrible. Unrelenting urgency, cramping, delirium, nausea. Telemedicine called in 3 days of Macrobid. Start to feel better by morning.
September 23, 2019
CT scan. No kidney stones found. Given 3 more days of Macrobid. Feel better by next day.
September 26, 2019
Symptoms come back with full force while still on Macrobid. Given 7 days of Cipro. Doesn’t help at all.
October 1, 2019 (Worst Day of My Life)
Urologist appointment. Cystoscopy. Told I have Overactive Bladder and that I need to calm down. I ask about an embedded UTI and nurse yells at me and says I do not have a UTI. At this point I was very sick. Unrelenting urgency, nausea, delirium, flank pain, bloating, can’t eat and can’t sleep. Around this time I also developed high blood pressure. I believe it was related to the inflammation due to the UTI.
October 2, 2019
OBGYN Appointment. Told I have IC and given a lidocaine concoction in my bladder. Doesn’t help at all. Given 2 weeks of Cephalexin and Amitriptyline. Amitriptyline knocks me out at night for two nights which was a blessing. Stop Amitriptyline because I read side effects. Antibiotics kick in and by October 6 symptoms completely gone.
October 13, 2019
Symptoms return and I take Microgen. Symptoms never again as bad as they were. Moderate urgency, cramping, itchy urethra, cloudy urine, smelly urine.
October 24, 2019
Microgen says:
Enterococcus Faecalis
Lactobacillus Gasseri
Acintobacter Parvus
Acintobacter Iwoffii
OBGYN gave me two weeks of Augmentin 875 2x/day followed by one week of Macrobid 100mg 2x/day. Symptoms go away but then come back just as prescription ends but super mild at this point.
November 7, 2019
OBGYN says antibiotics are not working and prescribed prophylactic dose of cephalexin and refers to Urology. I didn’t bother because the urologist already did not help.
December 2, 2019 (Best Day of My Life) APPOINTMENT WITH DR. BUNDRICK
Confirms embedded UTI and prescribed Augmentin 875 2x/day for one year with directions take until symptoms are gone for three months. Symptoms get less and less weekly. A few mild flares in December and January with moderate urgency and pressure. A few days with no symptoms also.
February 2020
Start Interphase Plus. Take for approximately 3-4 weeks. See no difference. Symptoms still. Mild urgency and slight pressure.
March 2020-June 2020
Start Kirkman Biofilm Defense. Increase by one pill in the morning and night every 4 or 5 days. See an improvement in symptoms. Now urgency is near gone. Only up slightly in the evening. And very mind pressure. Most of the day no symptoms at all.
June 2020
Still on Augmentin 875 2x/day for six months. I feel great. Most of the day I have no symptoms at all. Only symptoms left: rarely have urgency, mild pressure (maybe once a day, if that). Occasional cloudy urine and shedding. Met with a chiropractor and tested food allergies and my stool. High Levels of Enterococcus in my stool (same as urine) I also found out that my gut and liver are not detoxing well and that my GI barrier is very irritated. My next steps are to heal my gut to *hopefully* get rid of autoimmune disease (psoriasis and psoriatic arthritis). I think that my psoriasis, arthritis, high blood pressure and UTI are all related to all of the inflammation and my bodies inability to fight infection and detox.
June/July 2020
Retest with Microgen
Enterococcus is gone!
Pickup Ecoli and Enterobacter
Dr. B says to keep up with the Augmentin 875 2x/ day.
August 2020
Feel like like my symptoms have hit a plateau. A plateau that I can’t even complain about though. Mild urgency at night. Still getting up a few times but daytime is just mild pressure on and off. I love my life with out any concern about my UTI. Retest with Microgen. Still have ecoli and enterobacter. Dr B adds Levofloxacin.
October 2020
Still in the same place. I add Kirkman biofilm defense back into the mix. I work up to five capsules in the morning. Symptoms immediately get better. I had one whole week with no symptoms AT ALL. Since then only daytime occasional pressure.
December 2, 2020
My life is not impacted at all by this UTI. The only symptom I have left is occasional pressure throughout the day. I no longer get up at night. I can sleep nine hours straight without getting up to pee (unless my kiddos wake me up.) I follow up again with Dr B in January 2021.
It hasn’t always been sunshine and rainbows. In the last year I’ve had bad days and small fares but steadily has gotten better.
Here is what I am taking currently:
- Augmentin 875 2x/ day
- Levofloxacin 1x/ day
- Kirkman Biofilm Defense (Vancouver UTI Girl is taking NAC, but may also switch to Diane's Kirkman Biofilm Defense).
Worked up to five capsules thirty minutes before my morning dose of Augmentin and Levofloxacin. I take it on an empty stomach. Otherwise the busters digest your food and not the biofilms. I really believe in biofilm busters. Some think it’s hocus pocus but every time I start them I see a reduction in my symptoms.
- Magnesium Glycinate- 600-700mg/day. This is to combat the effects of Levofloxacin, not for the UTI. If I stop I start to ache.
- CoQ10- 600 mg/day. This is to combat the effects of Levofloxacin, not for the UTI. If I stop I start to ache.
- B12
Probiotics:
- Wellness Way CY (s boulardi) and Wellness Way Megabiotoc (several strains)
- Boric Acid vaginal suppository 1x/week. To combat yeast (she's taking the PHD Feminine Health brand)