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January 08, 2019

11 Month Update: Healing my Interstitial Cystitis / Chronic Embedded UTI

By On January 08, 2019

I have been battling my embedded UTI infection, which was thought to be Interstitial Cystitis, for almost 1 year. From being immobile in a wheelchair from severe bladder pain, to 2 failed attempted suicides because some doctors told me IC had no cure and I would live like this forever, to now having moments of joy and being able to walk again, it's been one wild ride. From literally almost dying to now writing a UTI blog and searching for cures and documenting what I've learned, I've been through hell and back to tell you my story. If you read my backstory, this whole bladder disease started with a regular urinary tract infection in February 2018. It almost got cured by Ciprofloxacin antibiotics, but eventually many antibiotics failed to eradicate the UTI (read the story if you want to know what happened). So my never-ending UTI was thought to be many things by many doctors. Interstitial Cystitis, bladder inflammation, bladder pain syndrome, some auto-immune disease, blah blah blah. If you read through my DNA next generation stories, my adventures there have proven that my Interstitial Cystitis was, in fact, an infection!

Most Frequently Asked Questions I get on Email:

1. How recovered are you now?
I am NOT fully healed, but I am well on my way to a recovery as I am now hovering at about 65% - 70% better. If you remember my most painful time from June to August, my bladder pain was so severe that I was in a wheelchair because it felt like someone was hitting my bladder 24 hours a day with a hammer. Then before that, from February to April, I was constantly weeing razor blade urine. May was my "ureka! moment" when I discovered that food had a huge effect on the bladder. So yes, this huge mess was caused by a UTI that never resolved. Over 10 standard urine tests picked up nothing and could not find anything. I knew deep down inside, if it was caused by a UTI, and it reacted to some antibiotics, there had to be an infection! I couldn't have gotten some random Interstitial Cystitis or bladder disease out of nowhere. Like Medical Medium says, "If you have an illness that has been labeled as an autoimmune disease, your body truly is attacking something, but it is not attacking itself. When you are sick and have mysterious symptoms, it means there is an invader in your body. The theory about the body attacking itself has become law inside the minds of well-intentioned doctors and health professionals. No one is willing to question it because they have come to believe it is the truth, even though there is no evidence backing it." Fast forward 11 months later to today, I am about 65% - 70% better on my good days as long as I stick to my clean diet (outlined below). On my super good days, I'm about 75% better. On the occasional bad day, I will hover back to 50% and be feeling like I need to wee every 20 minutes if I ate something bad (that is, acidic), like a rotisserie chicken with mystery sauce, a lamb, turkey with mystery turkey stuffing, sugary foods, dairy, and yes even Vitamin C. 

2. What is the diet you currently eat?
I try to eat sugar-free, gluten-free, dairy-free, and red meat-free. So this is the diet I'm eating at month 11, in January 2019:
  • I drink only FIJI bottled water because it is neutral PH (7+). Tap water in metro Vancouver BC is acidic 5 something. The Vancouver website says that tap water in our city is alkaline, but trust me, it's not. I tested Vancouver's tap water with PH strips and it is acidic. I had friends test it out too and Vancouver BC's tap water is definitely not neutral or alkaline.
  • I drink these teas: cornsilk, slippery elm, marshmallow leaf, chamomile (all organic)
  • no sugar: that means no honey, no sugar, no artificial sugar and I try to keep fruit to a minimum
  • the only fruits I eat are blueberries, pears and watermelons as my bladder is still sensitive to fruits
  • vegetables except tomatoes, mushrooms and soy
  • white rice boiled in neutral PH spring water
  • baked potatoes (I didn't do potatoes for a long time but have started including them from time-to-time because my weight was so dangerously low)
  • once in a while, I will do gluten-free pizzas and I do NOT need prelief for this clean pizza: crust is made of rice flour, light pesto instead of tomato sauce, goat cheese (ok this is dairy, I know I know, but I need cheese on my pizza, haha), roasted garlic, red bell peppers (some ICers flare from nightshade plants so take caution), mushrooms (skip this if you are on the Candida diet -- I was doing mushrooms for a while but stopped because my TCM doctor said no mushrooms while I have this UTI), and baby spinach. So my pizza is almost vegan EXCEPT for the goat cheese. I wanted to do vegan cheese but all the vegan cheese I have seen have soy in it and soy kills my bladder. I can make this myself, or I can order it from Panago.com
Anyway my diet changes every few months. As my bladder is tolerating more foods, I am adding more foods in slowly and I also adjust it depending on my weight and cravings too. I was losing way too much weight on the raw vegan diet, but that was what substantially healed my bladder. Unfortunately, when I was on the raw vegan diet, I fell to 79 lbs because I was too scared to eat anything back then. I am now 95 lbs and gaining my weight back. My goal is to hit 110 - 115 lbs at my healthy normal weight. My diet has changed over the months, ranging from raw vegan to vegetarian to 80% veggies/20% meats to the Candida diet etc. Other ICers go on the IC diet, Candida diet, Paleo diet, or GAPS diet. I find that the IC diet is not enough to heal the bladder. You have to go stricter than that. My diet changes as my symptoms change, but I try to keep it as alkaline as possible and as close to the earth as possible. This means I do not buy or eat pre-packaged or processed food at all. Everything is raw veggies or home-cooked meals. I noticed that if I ate acidic foods like dairy, red meats, more meats, grains, my symptoms would be worse and constantly stay bad. I noticed my bladder began to heal slowly if I stuck to mostly eating vegetarian.
There are so many Interstitial Cystitis patients I meet who tell me diet doesn't work for them and they aren't healing, then they talk about what cheesecakes or pizza or pasta they ate and I'm just flabbergasted. Of course they're not going to heal eating that garbage with their Prelief medicine. They're just maintaining a vicious cycle and not allowing their bladder a chance to heal at all. That's all processed food with loads of ingredients that will irritate a sensitive bladder. They're repeatedly assaulting their bladder while crying about how diet doesn't work for them. There was one girl who typed an angry message at me that the diet did absolutely nothing for her and told me that "IC is incurable!" She wrote her message in caps lock, because caps lock means yelling. Curious at who this girl was, I went to her Instagram and saw that it showed photos of steak, cakes, apple juice, tomatoes and many foods that hurt sensitive bladders. Okay, so not only was she rude, she was also not very bright.

This is not her, this is a random photo

Then I meet others who told me they ate raw vegan for 1 whole week or even 1 whole month and didn't feel a difference, so they went back to eating normal. A lot of these "I did the diet for a month but it didn't work" emailed me that they haven't healed their IC in over 5, 10, 20 years and how they are now so far gone with lesions and ulcers that diet won't make a difference. I don't know how to respond to that because I am not an IC practitioner nor expert. I am only writing from my experience and sharing what I'm doing.

Ok, but think about it. I ate literally almost vegan for the past 11 months (sometimes even raw vegan) and I am now only just beginning to heal at over the halfway mark. That's almost 1 year of sticking to a strict diet plan of eating food that I don't like.... boring bland food...  This isn't a quick fix, this is a slow healing process since the bladder is one of the slowest organs to heal! This is a painstakingly slooooow healing process that requires the patience of a sloth. We must walk the path of the tortoise, not the hare. Jessica Parks (the YouTube girl who healed from her Interstitial Cystitis) literally ate like 5 or 6 foods for the first half year of her IC. I followed that same plan. This was pure torture for me, because I'm a foodie who loves meat, dairy and sweets. I was never Vegan or Vegetarian to begin with. But because I stuck to that plan, my bladder began to heal, slowly but surely. So for those who have very advanced bladder damage, diet may or may not work, I wouldn't know, because I haven't gotten to that stage, my bladder was shown to be okay in the cystoscopy. However, if you're looking for a diet that helps with IC bladders that are really damaged, I remember Montreal Healthy Girl on Youtube had lesions or ulcers on her bladder and she healed it in 4 years. She would be a really good source to check out.

The first month was noticeably better when I switched to a raw vegan diet, but there was still so much incredible pain over the next few months that I felt very hopeless and suicidal. I was suicidal throughout months 3 to 6. We chucked soo many antibiotics at this. Anyway, I had seeked a lot of help and fixed the majority of my bladder before I saw Ruth Kriz by month 8. I was still suffering when I saw her and still very symptomatic. She said it was good that I had been proactive working on finding cures and doing the clean diet so early on in my prognosis. She said if I had not eaten clean for the bladder, I could possibly one day have ended up with wounds or lesions on the bladder in a few years down the road! 

I could have healed my bladder faster maybe, but in October, I was doing so well that I got too excited and ate cookies, pasta and dairy in November. I was also doing antibiotics and Interfase Plus (a biofilm disrupter). Everything went backwards in my progress and all my symptoms got worse again. I took another DNA next generation urine test and it showed my e-coli tripled. I do them once a month via MicroGen DX and my urologist, naturopath or IC specialist signs the requisitions. So whether it was the food or the antibiotics or the biofilm disrupter or a combination of all of them.... it took a while to reverse the damage. I am now back on track but I wasted almost 2 months just trying to patch up the damage. So if you ever fall into temptation craving sweets or junk food, DON'T DO IT.

3. What are your Cooking Methods?
I mostly eat steamed or boiled. I do the occasional bake but I notice my bladder starts to feel worse. Grilling, frying, and stir-frying is a huge no-no. Cooking changes the food chemistry, even the most akaline foods change to acidic when they get heated. The acidity increases even moreso if you bake, grill and fry. I learned this from a TCM (Traditional Chinese Medicine) doctor. I tested that theory. If I eat baked, grilled, or fried foods, I would be weeing constantly. When I eat veggies that are raw, steamed or boiled, my bladder does just fine.

4. Do you believe Interstitial Cystitis is an infection?
Personally, I do not believe that all interstitial cystitis situations are infectious, but I do believe the ones that started with a UTI are related to that UTI and are infections. An infectious disease doctor from UBC told me that "Interstitial Cystitis is just a term for MANY possible bladder situations, it is not a diagnosis!" Well, said. Anyway, if your standard urine tests tell you that you have no infection, don't totally believe them. I would say you start reading at LiveUTIFree.com. It will totally open your eyes to details about why standard urine tests fail. 

5. What medications do you take?
If you have been following my old posts, I do not take any bladder pain nor urinary pain meds. No uribel, no pyridium, no elmiron, no gabapentin, no mybetriq, no toviaz blah blah blah. I have tried many antibiotics but that's about it for pharma meds. I didn't want to cover up or mask any pain, because I wanted to get to the root of the problem and see if I was actually healing. But don't listen to me on this, you do what's best and most helpful for your body in terms of pain. If you have to go to work, you're going to need pain meds to help get you through, right? Do what you feel gets you through the day. I don't work so I'm able to experiment around and let my body take the full brunt of any pain. I will continue to try different antibiotics or anti-fungals, and I took a lot of supplements which you can view on my Vancouver UTI Girl YouTube. (I now no longer take this many supplements, I have weaned down to just a core few, which I will release on my YouTube in the future).

6. What is the level of your bladder pain? How frequent are you weeing?
I have no bladder pain at the time of this writing. Woohoo! I was back to walking by October 2018. I have eradicated all bladder pain by December 2018. I can even jog a little now (not like real jogging, but running across the road because I'm a horrid jaywalker trying not to get run over by cars). My specialists couldn't believe I was the same suicidal crying girl in a wheelchair back in the summer. I was like "Hey 'sup? I can walk now" when I strolled into their clinics this November and December. My weeing went from every 5 minutes of razor-blade drips to now 'almost-regular' streams. I say 'almost', because once or a few times a week, I might get a "hot" or mildly stinging wee if I don't drink enough water. If you want to know how I got to healing up to this stage, it was a lot of work, a lot of practitioners, and a lot of things I tried -- it's all detailed on the blog.

7. How much did you spend?
To this date, I'm a little over the $10,000.00 Canadian mark and the bills will continue to climb. So sad how a UTI gone wrong would end up costing over 10 grand of experimenting around with various methods. The medical system is a fail when it comes to chronic UTIs, embedded biofilm UTIs and Interstitial Cystitis. I have no idea why it's so under-researched or unknown. Only very few doctors are into it.


8. When do you launch YouTube?
My YouTube "Vancouver UTI Girl" has been up since October or November! I'm working on new content that I will be releasing soon, because I get so many emails asking what I eat and how I prep my food. It is just way too time-consuming to reply to each email on what I eat or how I cook, so I will start showing what I make on YouTube that has been helping my bladder recover.

9. How did you get to recovering up to 70% in 11 months?
If you want to read about everything I've tried, dig through this blog and read my long journey in detail. You can also check out my Instagram and the comments where I have conversations with others on my healing journey. I dislike it when people email, "So how did you heal?" They want me to compress all the posts I made on my healing journey into 1 email because they are too lazy to read the blog. I ignore those emails. I spent countless hours researching and then documenting everything on this blog on what worked, what failed, and what partially worked for my bladder. Read through it if you really truly sincerely want to know what I did.

10. Can we chat / Can we be friends / Can we be email buddies?
I'm sorry but no, we cannot. I get overwhelmed by messages and emails so I have stopped replying to emails from readers. I block incoming private messages on my Facebook because I do not use it for chatting, I use it to access private groups. As for emails and chats, I don't have the physical time or the mental energy for it or I would be on my computer 24/7. I have my own family and I need to eat, sleep, research, and focus on my own healing too. I also have anxiety and mental anguishes like you over this bladder saga, so I need a lot of downtime away from the internet! However, on the right hand side of this blog, the bottom of this blog, and on my Contact page, I list awesome people and wonderful support groups who have helped me (or who I have heard of from other IC & UTI patients). Join their forums, FB groups, instagrams, call them, email them --- they will be an amazing pot of wisdom and guidance for you on your journey.


11. Who are your doctors? How much are their fees? How do I see them? Who is the best? Who do you like better?
I am under the care of so many doctors right now, but the main helpful ones are on the right side of my blog. Contact them to ask about becoming a patient. Don't ask me about their fees or schedules, I am not a medical secretary. As for who is the best, it is up to you to make that judgement on who you feel would have the best method or chemistry for you. Do your legwork and come up with important questions to ask the specialists, so you can choose.

12. Can we meet in person? I am near you / can drive to you / fly to you.
This depends. I have met 1 chronic UTI patient in person, and had a few phone calls and Skypes with others. At this point in time, probably not. If you happen to be in Vancouver BC, maybe... but I am really picky about who I meet. I prefer people who are quiet, calm, and gentle. Loud talkers with erratic emotions would make me very uncomfortable, so it would depend if we are compatible personality types.

Disclaimer: Everyone is different. This is only what is working for me, and is NOT intended to be medical advice.

December 06, 2018

Taking A Christmas Break & November Findings

By On December 06, 2018

I am taking a break away from the blog and instagram for about a month and will return in mid-January. Dealing with a chronic UTI is very taxing on my mind and physical state. I want to spend December focused on Christmas with my friends and family.... so I'm going to try to push the chronic UTI / IC stuff out of my mind for this month.

I also had new findings and interesting information in my journey, which is detailed on my instagram from end of October to late November. My bladder pain returned in early November, which confused me because I was recovering, and then slowly went backwards in progress! So I did a urine MicroGen DX test on November 13th to see what was going on, and results showed that my e-coli count had tripled! My recovery had gone backwards!!! The e-coli and pain had come back after I had been eating cookies, honey, milk, and noodles + taking Macrobid antibiotics + Interfase Plus (a biofilm breaker) from late October - early November. So there are 3 plausible causes -- the foods grew the e-coli, or the antibiotics killed off my good guys and the ecoli could grow back, or the Interfase Plus broke some biofilms and all the baddies came swimming out and my antibiotics couldn't kill them. I wouldn't know for sure which was the true cause.

However, what I do know is that the bladder pain correlates to the number of bugs found in my bladder! When I was in a wheelchair and barely mobile back in June, I did a urine test and the e-coli count was 1.5 million. When I was feeling really good and able to walk again by September (long story on how I healed, found on this blog and instagram), my e-coli count had fallen dramatically to 72,000. Then when my bladder pain slowly started to creep back in early November, my e-coli count showed it had crept back up to 178,000. So it's 100% confirmed that my pain grows when the bugs grow, and diminishes when the bugs fall. Therefore, I can confidently say that my bladder pain is caused by the number of e-coli in my bladder. By the way, when I say urine tests, I mean DNA next generation sequencing urine tests, not the standard lab urine tests. The standard lab urine tests have all failed me, saying I have no infection. My e-coli was found by the DNA next generation sequencing urine tests.

I will resume posting on instagram and on Youtube starting in mid-January. If you have sent an email and have not received a reply, I apologize as I am not able to catch up with emails anymore. The best place to communicate with me is on instagram. If you are looking for urgent support, please reach out to one of the practitioners on my blog's right hand side column, or the support groups at the bottom of this blog instead. I recommend starting off with the Inspire forum, because there is so much awesome information on there by chronic UTIers, ICers, and mystery bladder problem patients. I'm looking forward to coming back to this in mid-January after I take a month off to 'refresh' my mind and body.

December 05, 2018

Coconut Aminos: A Soy Sauce Substitute for Asian Dishes (Bladder & Interstitial Cystitis Friendly Sauce)

By On December 05, 2018
Being on a strict diet for an IC bladder or a chronic UTI bladder can be really hard. I've talked to many patients who have been recovering, or fully recovered, or in remission, and many were healing through various diets such as: raw vegan, vegetarian, white meats & veggies, candida or GAPS. When I look at the Interstitial Cystitis diet online, I find that it is more geared towards Western food and Western type of diets. I looked all over online to search for Interstitial Cystitis friendly Asian foods but couldn't find anything written by Asians. You see, I'm Chinese, and 90% of my foods were Chinese and Japanese dishes before I got this long-term UTI problem.


[ Coconut Aminos sauce photo from JessicaGavin.com ]

We don't eat just "chow mein or fried rice" (the generic stuff I'm seeing that is labeled as "Asian" by Interstitial Cystitis Western writers). A lot of it I see online makes me roll my eyes. Some of it isn't even the food we eat in my culture, it's been made up to sound like Chinese food, but it's not. Even some of the ingredients or vegetables they offer in those dishes, are not stuff we grow or eat in our mother country. *facepalms self -- If I could roll my eyes 100 times, I would. *

This is real Chinese food...

Not this:


These aren't IC-friendly photos, but it's just to make a point. Chucking crispy noodles into burgers or salads does not mean it's suddenly an Asian dish. Lol. It's like me pouring Alfredo sauce into my Jasmine rice and then claiming it's an Italian dish. Yeah, see how silly that sounds? But whatever, I'm going off-tangent and I'm not here today to talk about what's Chinese food or not. It was just a little vent I had to get off my chest.

I cooked Chinese, Korean, and Japanese foods, and ate mostly out to Asian restaurants (Thai, Vietnamese, Shanghainese, Schezuan etc) before my bladder problems. It can be very very acidic, thus, I cannot eat a majority of these on my current bladder. I ate mostly Asian foods because I can't digest a lot of Western foods due to my Asian genetics (I'm semi-lactose intolerant), and my gut cannot handle many of the rich sauces or types of foods that Westerners can eat. In the Chinese culture, we do not eat raw vegan or do much raw fruits, so I had so much digestion problems when I switched to raw vegan for my bladder. It helped my bladder, but it gave my stomach lots of cramping and tummy aches. I couldn't find any info on "safe foods" for an IC or UTI bladder for Asians, so I'm guessing it's probably written in the Asian language, which I sadly cannot read very well anymore. Having been born in Canada and not very many Asian friends here, I forgot my Chinese reading and writing and now. I also knew a bit of Japanese too back then! I regret not remembering my Chinese and Japanese, because I want to grab info from Chinese and Japanese interstitial cystitis and urinary tract infection blogs!

Soy sauce and soy products are very prevalent in the Asian diet. However, soy irritates IC and UTI bladders, and it definitely irritated mine. I find that I would flare badly if I had soy sauce, edamame beans, tofu, and soy products, which make up a huge component of my Asian dishes and snacks. I had to eliminate soy completely.

As my bladder is healing now and I can tolerate a lot more foods, I still cannot handle soy. But I miss cooking with soy in my vegetables and meats in my steamed and boiled Chinese and Japanese dishes such as bok choy, gai lan, home-made vegetarian sushi (no vinegar and no raw fish), rice, organic poultry and fishes. But then I discovered Coconut Aminos at Whole Foods! If you search for the right Coconut Aminos (look for one with the cleanest ingredients) Coconut Aminos is certified 100% organic, gluten free, dairy free, soy free, wheat free, no MSG, non-GMO, contains 17 natural amino acids, and is vegan. It resembles soy sauce and is dark, rich, and salty. So, whenever you see soy sauce in a recipe or you miss having soy sauce in your food, Coconut Aminos is a great substitute that is IC friendly. If you are a bit hesitant on it at first, try it in small amounts with 1/2 tablet or 1 tablet of Prelief, and then slowly try it with less or no Prelief. I find that I can handle Coconut Aminos in small amounts in my organic white rice (steamed with FIJI spring water) and steamed wild fresh Rock Cods, Ling Cods, and Tilapia fishes.

Coconut Aminos recipes & information:
Jessica Gavin, Culinary Scientist: The Facts About Coconut Aminos
Eat Drink Paleo: What is Coconut Aminos?
IC Friendly Recipes: Soy Sauce Substitute - Coconut Aminos

[ Coconut Aminos chicken salad photo from EatDrinkPaleo.au ]

*** Note: Some IC patients said that coconut aminos flared their bladders. This could be the fermentation, or they have a food intolerance to coconut, etc. So start it in very small amounts (I always start new foods in miniscule amounts like a teaspoon to a tablespoon and then slowly work my way up with it). 

November 17, 2018

Youtube: My Interstitial Cystitis and Chronic UTI Story

By On November 17, 2018
I'm starting a new YouTube series. My first video, My Interstitial Cystitis & UTI Supplements: Healed from Wheelchair to Walking shows the supplements that I take daily. Hope you enjoy the video and find it informative! Please note that the first item I listed has a soy warning (which I put in the video), so I'm still looking for a probiotics that I can do that doesn't have soy. If you have any suggestions, let me know on Instagram!

November 13, 2018

Dr. Matthew Malone-Lee joins Professor Malone-Lee's Clinic: Chronic UTI Practitioners

By On November 13, 2018

If you haven't heard of Professor James Malone-Lee before, he is very well-known within the Interstitial Cystitis and Urinary Tract Infection community! Patients who come to Professor James Malone-Lee’s urinary clinic are often at their wits’ end with near-suicidal despair. He treats patients with Chronic Urinary Tract Infection, other-wise known as Lower Urinary Tract Symptoms (LUTS). You can read his biography here and find his articles all over the internet. Many patients who were told by their doctors that they had "no infection", have been found with bladder infections by the Professor and his team.

Professor James Malone-Lee has retired from NHS practice on November 1st, 2018, and he is now only doing private patient practice at Ten Harley Street. His son, Dr. Matthew Malone-Lee has been training with Professor's team for some time now, and he will be joining the clinic team on November 14th, 2018. Initially he will work on Wednesdays between 1:30pm and 4:30pm seeing 1 patient each hour. In time, this will be increased. Dr. Matthew Malone-Lee is a GP with a special interest in urinary tract infection. He has trained under the Professor extensively and will be working alongside using the same protocol to treat this condition. There are large queues of patients waiting to see Dr. Matthew Malone-Lee in his ordinary practice because he is very well-liked, clever, and conscientious.

It is planned that Dr. Sheela Swamy will join the team in Harley Street in due course. Dr. Swamy worked with Prof at the LUTS NHS clinic for many years and is a key member of his cUTi research team. There is a need for more staff because of the demand for appointments which has not been eased by opening of the NHS clinic. In all cases the fees for a new and review consultation will be the same.
When patients contact Martel Daley-Peat (the team's private clinic secretary) they will be able to choose between seeing Prof or a member of his team. Fees, hours, and appointment schedules can be provided by Martel. All team members will be working alongside the Professor using the same protocol to treat this condition. They will be supervised by Professor Malone-Lee who will be checking on the management plan and approving it. For patients wanting to book an appointment privately using UK Health Insurance, a referral letter from the GP is required. For those self-funding, this is not necessary but is preferred so that the GP can be notified of all current diagnostic and treatment protocols each time the patient is seen.

A urine check is done during or in-between appointments. So international patients suffering from Interstitial Cystitis, chronic UTI, or acute UTI, they will need to fly over to London to have a fresh urine analyzed on-site to check for infection.


Clinic Information:

The clinic address & website:10 Harley Street, London (nearest tube Oxford Circus) at http://www.tenharleystreet.co.uk/

Phone: 07568 403211
To find out what area code to put in before dialing, visit How to Call Abroad and plug in your country in the query box to see what the area code for your country calling to the UK should be.

Email: profjmlclinic@tenharleystreet.com

To read about how to prepare for your first appointment with the team, read the fact sheet over at Chronic UTI Info.

Facebook Groups I highly recommend you to join: Chronic UTI Women's Support GroupMen & Women's Chronic UTI Support Group. You can only join the groups if you are a patient of one of the specialists mentioned on the chronicutiinfo.com website.

I have been given permission by Chronic UTI Info and Professor Malone-Lee to publish this information.

October 27, 2018

Understanding Interstitial Cystitis: The Link Between UTI and IC

By On October 27, 2018
Is Interstitial Cystitis sometimes tied to a low-grade Urinary Tract Infection? This article by Christine Haran talks about this topic, which originally appeared at ABCnews.com.


An excerpt taken from Christine Haran's article:

What is interstitial cystitis (IC)?
It's a chronic disease of the bladder that is caused by deficiencies in the lining of the bladder, which allow irritants in the urine to leak through the coating of the bladder into the interstitium where all the nerves and nerve endings are located. These irritants in the urine irritate these nerve endings and basically initiate a cascade of events that is responsible for the symptoms that people with interstitial cystitis have. Part of this cascade is the release of substances that act on mast cells, which then release histamines. We believe that it is histamine that causes the bladder to sense frequency and urgency. The irritation also leads to the development of scar tissue in the bladder, which is less elastic than normal bladder tissue.

What causes these deficiencies in the lining?
Many women who have urinary tract infection-type symptoms, such as frequency, urgency and pain, are told by their doctors: "Oh, your urine test is negative. There is nothing wrong with you." These women, and men with urinary symptoms, shouldn't stop there because most of the time the culture that a doctor takes in the office is not going to show a chronic low-grade infection, which I feel is a risk factor for interstitial cystitis. But it's not normal to go to the bathroom every hour or to have sense of urgency all the time. So people need to keep on going until they find a doctor who will recognize that there is something wrong with them.

Her advice to people with IC symptoms: 
Many women who have urinary tract infection-type symptoms, such as frequency, urgency and pain, are told by their doctors: "Oh, your urine test is negative. There is nothing wrong with you." These women, and men with urinary symptoms, shouldn't stop there because most of the time the culture that a doctor takes in the office is not going to show a chronic low-grade infection, which I feel is a risk factor for interstitial cystitis. But it's not normal to go to the bathroom every hour or to have sense of urgency all the time. So people need to keep on going until they find a doctor who will recognize that there is something wrong with them.

You can read her full article over at Central Park Urology's website.

PS, my IC was ruled out after I did DNA next generation testing which found I had low-grade e-coli UTI. I was dead sure I didn't have IC, because my problem started out with a raging UTI that was initially responding to antibiotics. My full story is here.

October 24, 2018

How to Do a UTI Test: DNA Next Generation with MicroGen DX, Aperiomics & RTL Genomics

By On October 24, 2018
Did you have a urinary tract infection, and then it stopped responding to antibiotics? Did your UTI stop culturing positive, and all your urine lab tests say that your cultures are negative? Or were you written off as having interstitial cystitis and left to live in years of pain with no medical help? Maybe you were told you were hysterical, or that it was all in your head?

But.... what if there is a chance that maybe, just maybe, you have a deeply embedded UTI or a chronic UTI? Or something else like yeast, fungus, parasite or virus is causing you UTI-like symptoms and bladder pain?

There are higher technology methods to find the root cause of your bladder problem and help you find the correct diagnosis. This was able to rule out interstitial cystitis for me, because it discovered that I had a low count e-coli UTI. Once I found that out, I started targeting at my e-coli. I didn't use my Elmiron, Topiaz, Mybetriq, Gabapentin medication prescriptions and eventually was able to get out of my wheelchair (I was wheelchair-bound for severe bladder pain) because I'm slowly healing. I wouldn't have been able to start this healing process if I didn't find out I had a low-grade UTI. However, I'm far from recovered as I am still on this journey of hopefully getting fully cured one day.


For those who are new to my blog, here is a quick recap: I had a UTI (urinary tract infection). It responded well to antibiotics at first, but when it stopped responding to antibiotics, cultures
started showing that my urine was "negative for infection" even though I still had all the symptoms
of a UTI. Deep down inside, I still felt like I had a UTI, and I was sure it was still something related
to the UTI or that there was a lingering UTI. I did over 10 standard urine lab tests and all kept
saying I had no infection. It was starting to lead to the prognosis of Pelvic Floor Dysfunction, Interstitial Cystitis and Bladder Pain Syndrome. The word "intermittent catheter" started to be mentioned when I looked at the notes exchanged between a drop-in doctor and my Vancouver-based urologist. I knew this was not how my life story was meant to progress, so I researched for a method that could find me the answer. In the end, DNA next generation sequencing urine test found my low-grade pathogens (e-coli) in my urine, so I did have a low urinary tract infection, that was missed by standard urine tests. You can read about it in my old posts if you are new to this blog. And yes, I have been recovering, without the need for catheter and bladder pain medications, which you can read about in my old posts.


Your urine infection could be missed by standard tests:
Standard urine tests are outdated, and you can find out all about how UTI testing works and how it fails, on the website at Chronic UTI Australia. On that page, they talk about how urinary dipstick tests and urine cultures are outdated and only pick up certain pathogens, or require a certain number of pathogens to say you have an infection. I urge you to read that link if you want to know why your urinary tract infection was missed (or you suspect it was missed).

DNA Next Generation Urine Tests - Who are They and How to Do Them:
To find out if you have a low-lying UTI, or an embedded UTI, that was missed by standard urine lab cultures, Chronic UTI Australia outlines a few DNA Molecular lab companies that you can test your urine with. I have already done it with MicroGenDX and Aperiomics which you can find in my old posts on how I did it, how much I paid, and how it looks like. You can see their contact info and fees listed on the right hand side of my blog as well. To find out how these are done, please call the labs with your questions instead of emailing me, plus I already detail so much on my old posts, so all my answers are there if you read through them carefully. For all your inquiries, call the companies directly instead. You do not need to travel to the US to do them. They can send you the kits to your GP, naturopath or to your home for you to do them. Then you express-ship the urine back to the companies. They either have a solution that keeps the urine stable, or use vaccuum-sealed vials, so your urine will not expire even if you are shipping over a few days. Here is their information:

DNA MOLECULAR LABS (UNITED STATES)

MicroGen Dx (formerly PathoGenius Laboratory) provides Next-Gen Sequencing for urine testing and is located in Texas, USA.   This lab accepts samples from international self-requests (ie you can order your own test).  The website states:
“Recurrent or chronic UTIs are sometimes the result of more than just a single infectious organism. Urine culture is biased towards a single infectious organism based on CFU (colony-forming unit) count, possibly leading to inappropriate therapy. Some problematic organisms are not readily grown in culture which may lead to incorrect treatment or non-treatment. The advantage of NGS is the ability to test and detect multiple organisms simultaneously, including those that may not grow readily in culture. And if the patient is currently on antibiotic therapy or has a recent history of antibiotic therapy, detection of pathogens by NGS is not impacted by the presence of antibiotics.”
www.microgendx.com
You will need a doctor, urologist, or naturopath to sign a requisition form to them. If your GP refuses to, just ask MicroGenDX who in their database has a doctor in your area who has signed their patients on with them. 
Fee: $200 USD per kit

RTLGenomics
is a sister-lab to MicroGen Dx focused on research services.  It is not a clinical laboratory and does not offer diagnostic services.  However, through its clinical research programme they will accept self-referral urine samples from internationals who are not working with a US practitioner.  You will receive a clinical report for research purposes, but RTLGenomics does not provide this data as clinical diagnostics.  Patients have said it is important to work with an experienced practitioner to interpret these tests results.
www.rtlgenomics.com 
I have never done this one, so I don't know how it works.
Fee: I don't know

Aperiomics Inc offers Next Generation Sequencing (NGS) with ‘deep shot-gun metagenomic sequencing’. Their technology uses 100 percent of the DNA, opposed to NGS 16S that uses .001% of the DNA.  Their UTI test identifies all known bacteria, viruses, fungi and parasites that have been genetically sequenced.  This lab accepts samples from international self-requests.
www.aperiomics.com
You may or may not need a doctor, urologist, or naturopath to sign a requisition form to them. If your GP refuses to, just ask Aperiomics who in their database has a doctor in your area who has signed their patients on with them. That's how I found my Vancouver BC naturopath to sign mine for me. Someone else told me that if you were not in the US, you don't need a doctor or naturopath or urologist to sign the form to them, so give them a call and ask.
Fee: $750 - 950 USD per kit

October 03, 2018

Severe Weight Loss from a Chronic UTI (due to restricted diet)

By On October 03, 2018
I used to be a slim girl at about 112 lbs at 5'-2". Right now, I'm looking pretty skeletal at 83 lbs. Unfortunately, while I am healing my bladder at a great progression, it comes with a huge
price -- severe weight loss. What caused this?

First of all, I was wheelchair-bound since June from severe bladder pain, so I haven't been able
to exercise or move. So my muscles were de-conditioning from June through September. (I started walking slowly again in September and by October, I can almost move around like a normal girl.
Some of my doctors' jaws dropped when I walked into their clinics and was like "Hey what's up". I had to at least let the drop-in doctors know what happened... even if I never go back to them again, it's imperative that they know so that if they get patients like me in the future, at least they know there are ways to heal! I have a main doctor in my city near my home, and my 2nd doctor in another city. I haven't seen them yet, but I will soon to update them. I did it through my natural healing methods, and did not use any of those pharmacuetical pain meds.)

Second of all, I had to go on very restricted diets to soothe and heal my bladder. I did not bother doing Prelief (so many ICers I met are eating normally with Prelief -- but then it makes me wonder
if that slows the healing process). I wanted to heal my bladder as aggressively as I could by eating ONLY natural unprocessed foods like alkaline vegetables, grass-fed organic meat, and NO take-out, NO processed foods, NO restaurant foods. I basically ate directly from the earth -- steamed or raw foods. This is way more strict than the IC diet. It's like a mix of alkaline diet + Candida diet + keto diet + sometimes vegan diet kind of thing.... I don't even know what to call it...

So yes, this super strict diet is healing my bladder in the past 8 months. If you read my old posts,
I was originally urinating at 25 times of burning drips/day and specialists were throwing
Gabapentin, Elmiron, Pyridium, Topiaz, Myrobetriq at me like candy and saying words like instillations, catheter use, or freaking me out more by saying they don't know if I will go back to normal, and was told to see a psychiatrist to work this trauma out. Um ok, whaaaat?! Today, I am peeing at 6 times/day, almost regular streams on the toilet.... almost like a normal girl. Not totally normal yet as there are still feelings of frequency and the random slight bladder pain now-and-then. Hallelujah!!! But sadly, I dropped nearly 30 lbs and still losing....

Maybe I should just paint myself black and white and say I'm dressing up as a skeleton for Halloween. Then I don't need to spend money on a costume.


So like I mentioned above, loads of pharma stuff was tossed at me. I decided not to take ANY
pain medications and I felt the full extent of my pain. It was something I personally chose to do,
so that I would have nothing masking my pain. This is so I could tell if I was truly healing or going backwards. (Disclaimer: I'm not going to advise anyone on whether you should do this, or not do this. This will be at your own discretion. I am not a medical practitioner and will not be held responsible for what you choose to do).

I chose instead to use TCM (traditional Chinese medicine) as my natural herbal pain killer and pathogen killer, and my recovery routine is outlined here. Since I went almost fully natural healing (I did some antibiotics here and there but they failed), it was a long painstakingly process and enough to drive anyone crazy. It drove me insane twice, that I attempted something stupid and unthinkable. So if you decide to go the natural route, you need to have a strong mind, motivated soul and think positive. Don't let yourself despair. If you read my last post It Was Never Interstitial Cystitis, It was a Damn UTI!, you'll see I'm on the right track and how I healed myself from 1.57 million e-coli (July 2018) to 72,000 e-coli (October 2018).

Here are my photos of how I currently look like. I was very slim to begin with already, so I didn't have any extra fat to lose! I read about how some IC and chronic UTI patients mentioned their weight loss was a bonus from this stupid disease, but it just made me skeletal thin. One nurse asked if I was in for anorexia. WTF? I did read about other patients where they got really thin too, and their partners left them. That is so terrible and makes me so upset for them. So I'll show you a Before and After.

When I was healthy, before the chronic UTI:


Here I am now from August to Oct 2018, after the chronic UTI started in Feb 2018:

Ugh, my womanly chest is totally gone!

Bones bones bones

My hand looks too big on my thin wrist

Bones starting to show through legs

Ribs starting to show

It's so obvious in the hands and arm. When I go out, I wear very long sleeved shirts to cover my hands completely so nobody thinks I'm some anorexic person. A patient at a doctor's office said, "You're so thin!" and I just said "Yeah, bladder probs." She looked so puzzled. Lol. Like, how do you connect losing weight with a bladder, right? I should have just gave her my blog.

So it's frustrating, to be healing really well in the bladder, but on the other end, my body is wasting away. Sometimes I joke, "Who do I starve out first? The semi-antibiotic-resistant e-coli in my bladder, or me? Let's see who doesn't die first." :P
Once I heal from this nasty horrible UTI disease, I am so going to hit up every All-You-Can-Eat-Buffet in Canada and stuff myself.

If you are new to this blog, just click on "MY STORY" at the top of this blog menu.

MicroGenDX & Chronic UTI: It was never Interstitial Cystitis, Bladder Inflammation or Pelvic Floor Dysfunction! It was a Damn UTI!

By On October 03, 2018

"You have Interstitial Cystitis. Pelvic floor dysfunction. Bladder inflammation. Use a catheter. Go
on Elmiron. No infection found. You're hysterical so sending you to a psychiatrist." These were the words I kept hearing. But eventually I would find out that they were ALL wrong. At the time, my
gut instinct told me I was suffering an unhealed long UTI. I was right! MicroGen DX found semi-antibiotic resistant e-coli in my urine twice, when over 10 standard lab tests failed to find my UTI!


You can see my recovery progress on these MicroGenDX test results from 1.5 million to 75,000 "superbugs" which I have been doing via natural healing, which I will discuss below.

photo from my Instagram post @vancouverutigirl

In July's post, I had 1.5 million e-coli shown on my MicroGen DX test. They were antibiotic resistant to 1 family called Quinolone back in July. Quinolones include the antibiotics Ciprofloxacin and Levaquin. Now in October, I have 75,000 e-coli, which shows I am recovering. However, you'll notice that the bugs are getting smarter and are resistant to both the Quinolone and Beta-Lactam families, which means I cannot take Cipro, Levaquin, and all Cephalosporin 1st and 2nd generation antibiotics which include Keflex and Cefuroxime.

Why do standard urine lab tests say we have no UTI infection?
My UTI was not picked up in standard lab tests, because you'll see that my count is at 10^6 and 10^4 in those screenshots. One of my microbiologist friends told me that labs only green-light you as having a UTI if your count is 10^8 or higher. So that's why so many of us are told "you have no infection" when we actually do. The urine lab testing method is outdated. In fact it's over 100 years outdated. That is why you see so many women out there with complex bladder problems when
many of them may just have 1 long unhealed urinary tract infection that wasn't treated properly
by a doctor (eg a course that was too short, or the wrong antibiotics, or a doctor who refused to
give antibiotics).

How did you heal your UTI from 1.5 million Ecoli to 75,000 Ecoli?
It wasn't easy. If you read through my old posts, I had 2 failed suicide attempts because I was in excruciating pain. The pain was so severe that I became wheelchair-bound. Specialists and several doctors in Canada told me I had IC, or this and that,  or they didn't know, or I could be like this forever. I was so scared I felt hopeless and there was nobody who could tell me what I had or why. I couldn't accept that it was my life because I had a normal happy life before this mess. I knew something wasn't right! Since my suicide attempts had failed, I took it as a sign that I had to live. So I started hunting for answers through IC and UTI blogs, forums, instagrams, facebook groups - you name it. I was able to heal myself with this recovery routine. I had gone on loads of antibiotics which all didn't work, except for Ciprofloxacin which ALMOST cured it, read my story on why and how Cipro failed. If I am given antibiotics in the future for this, will I take it? I probably will, but with caution. If I do, I will update in a future post.

How do I obtain a MicroGen DX test?
First of all, you need a doctor, urologist, or specialist who will be on board with this. I met a lot of resistance from GPs in Vancouver, because they didn't want to get involved with an American lab. The technology was outside of their practice and scope. In June 2018, I had my 1st one signed by Dr. Carley Akehurst at Cross Roads Naturopathic in Vancouver BC. In July 2018, I had my 2nd one signed by Dr. Hsieh, urologist in George Washington University in Washington DC when I flew there to chat with him and to get a urologist onto my medical records so that my Canadian doctors and specialists would follow his notes. In October 2018, I had my 3rd one done a few days ago with Ruth Kriz, an IC and UTI specialized nurse in Washington DC.  You can find their contacts on the right hand column of this blog. I decided to start treatment under Ruth Kriz after I met patients who were successfully healed or put into remission by her at WestCoastMint.com and ICBigSister.com. You can read more about how to do a MicroGen test on my posts about them here or on the MicroGen FAQ.

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Key Terms

UTI (urinary tract infection)
Urinary tract infections are caused by microbes such as bacteria affecting the kidneys, bladder and the tubes that run between them. It is accompanied by pain with urination, increased urinary frequency and/or urgency.

IC (interstitial cystitis)
Interstitial cystitis, also known as bladder pain syndrome, is a type of chronic pain that affects the bladder. Symptoms include feeling the need to urinate right away, needing to urinate often, and pain with sex. IC is associated with depression and lower quality of life. The cause of IC is unknown. Doctors say there is no cure for IC, but I'm finding recovered IC'ers on Inspire and Instagram!

BPS (bladder pain syndrome) Also known as Interstitial Cystitis, it is a chronic inflammatory condition of the bladder, which unlike bacterial cystitis; it is not caused by common bacteria, and does not respond to traditional antibiotic treatment.

PFD (pelvic floor dysfunction) A term for a variety of disorders that occur when pelvic floor muscles and ligaments are impaired. Symptoms include pelvic pain, pressure, pain during sex, incontinence, incomplete emptying, and visible organ protrusion.