Barrie Engel's IC Healing Story
I’ve had UTI’s throughout my life but I was diagnosed with IC in 2009 after 7 years of negative UTI tests. Followed the diet, tried Elmiron and other drugs, monthly bladder installations & even steroid injections every 6 months, etc - nothing helped.
*Nov, 2018
Noticed the pain got worse. My Dr sent me to a lab for a culture test which was slightly positive - she gave me 5 days of antibiotics - Didn’t work. Few weeks later, 2nd test positive - more ABX - again didn’t work. I stopped my social life altogether - it hurt just to move! Mid January, another test which was negative this time, but I knew the test had to be wrong - so she gave me a different ABX that also didn’t work. Started reading about Reoccurring UTI’s on Google & Twitter, then discovered Chronic UTI which led to Hidden Embedded UTI. Also learned how pathetically unreliable MSU Culture/Dip Stick Tests are.
*Feb 14th, 2019
Now desperate, called my Doctor. This time, I was told to come to the office. I gave a urine sample, they cultured it and she told me it was negative. She insisted it’s a really bad IC flare. I brought up my research to her on Chronic UTI & Embedded infection, and questioned the accuracy of Culture/Dip Stick tests. She said that the tests are fine, Long-term antibiotics are Not OK, and to accept that this is a really bad IC flare. Then she told me to get on the table to examine me. As soon as she went in,
Dr. “Wow, your bladder is on fire.”
Me “What does that mean?”
Dr. “You have an infection.”
Me. “But the test was negative.”
Dr. “Well, the test must have been wrong.”
She then prescribed me a lower dose of ABX for 30 days with 3 refills..... after just telling me that long-term ABX were not OK.
*Few weeks later
No improvement. Now desperately reading nonstop on Twitter/Google - everything I could find on “Hidden Embedded UTI.”
This led to a story of a woman from Australia who went through all of this. She heard about a Professor/MD in London named James Malone-Lee, read his extensive research on Chronic Embedded UTI, and the Microscopic Urinalysis Testing with a Counting Chamber that he does - which is the only way to find a Hidden Embedded Infection. She flew to his office in London to discover she had it. Her long story short: She is cured!
*My long story short
I wrote to him privately on Twitter asking for an appt with him ASAP. He got back to me the next day and told me how/who to contact. I got in on a cancellation within 3 weeks and flew to London (from USA).
*April 18, 2019, London
I was terrified that he wasn’t going to find anything, but boy did he ever. He confirmed my Embedded UTI which has had free reign in my body for a long time, it will take a long time to get rid of. Now, I’m finally treating the Cause - instead of the Symptoms! He told me to forget the IC Diet because I don’t have IC, no more Installations and steroids bc they will hurt more than help. I had a follow up Skype appointment on August 9th, and I will go back to London in October for another urinalysis.
*This may not be the perfect explanation but.....
These bugs are covered in biofilm and are hidden & colonized deep within the cells of the bladder wall where they are protected from antibiotics. They go back and forth from dormant to active (we go from feeling fine to flaring.) In order to survive, the bugs have to take turns coming out of the cells into the bladder to split/divide building a bigger army, then they swim back into hiding. Evidence of this can only be seen by looking at fresh undiluted urine under a microscope.
Pyuria is the first thing detected. Normal pyuria levels are 0-5, mine was 280 (WOW!). That’s because I’ve had an undetected, untreated infection for so long (& mis-labeled w/ IC) that it’s now grown into a Chronic/Embedded UTI. He looks for a lot more than just pyuria for evidence.
The Professors exact words, “There is no doubt that this is a significant urinary tract infection.”
These bugs are brilliant! They can sense when there is a 5-7 day course of antibiotics in the bladder so they stay hidden - but - if the ABX are consistently there, the bugs can no longer sense when the ‘coast is clear.’ They still have to split/divide, so when they swim into the bladder - the ABX kills them off. The ABX must be full strength to break through their protective biofilm and destroy the bugs. If the ABX dose is Too Low, the bugs can overpower it, making them even smarter.
So -
*Short Term ABX makes the bugs stronger!
*Low-Dose Long Term ABX makes the bugs Stronger!
*No ABX makes the bugs stronger - all this kept me screwed!
**Thus -
High dose Long-term ABX is the needed treatment - along with probiotics. He has done so many studies on this for 37+ years - including research/studies on why this is very unlikely to cause ABX resistance, cancer, C.Diff, thrush. All of this research is published.
This is the only Plausible explanation/theory for the cause of my horrible pain which controlled my life - that I have found.
***
I had a choice; Stay infected, tortured and let this infection grow & grow, or try the Only treatment there is to get these horrible bugs out of my body! For me, the latter is the lesser of the 2 evils!
It’s been 5 months now, - It’s Working! And, to my surprise my chronic migraines are suddenly gone - Never expected that as a side effect. Never thought my UTI had anything to do with my migraines.
I pray and hope this helps you. Please ask me anything as I am an open book.
Update: Dec 13, 2019
8 months in treatment. Best decision I have ever made in my life. I still get occasional flares but they last 1-2 hours on average with days/weeks flare free. My next appointment with the Professor will be via Skype in March and I will go back to London in April for a follow up urinalysis.
This story was submitted to me by Barrie Engel on @BarrieEngel on Twitter.
I will follow up with her in Summer 2020 to see how she is doing then, and update it here on this post. Some patients' full cure can take months to years. I joyfully await the day that she will be 100% cured.
The doctor she mentions is published on one of my older posts here: Dr. Matthew Malone-Lee joins Professor Malone-Lee's Clinic.