Interstitial Cystitis was a long nightmare: Getting My Life Back on Track, 4 Years Later and what Medications was my Winning Combo

I cannot believe a whole year has passed. I actually forgot about this blog for a long time. A few moments, I would remember it for a few seconds, then completely forget again. I also got anxiety when I thought about this blog, because I didn't want to remember how sick I used to be and how awful my life used to be. But just recently, I sent this blog out to a next generation testing company, and then someone asked me this week if I could update it.

So I logged on this blog and was surprised to see that my last post was actually exactly Sept 2021 from a year ago. I thought I had updated it more frequently than that.

I am grateful to Dr. Bundrick first and foremost, then second to the late Professor Malone-Lee. I hope to get to meet Professor Malone-Lee's son Matthew one day, who took up his father's practice.

There is so much I want to say and write, but I really don't want to write or look or read at this blog anymore. I'm pretty much done with this blog. This is most likely my last entry.

For anyone looking for treatment, know that this is NOT a one-size-fits-all cure or management protocol. Some people got better from antibiotics, others from Hiprex, others from a combination of antibiotics + Hiprex, some from Ozone, naturopathy etc etc. There are so many stories that you don't find on the internet, but you can find in Facebook groups, instagram community, Twitter, Youtube, Inspire forum etc.

If you are coming to this blog for the first time, I'm going to point you to this site to start your journey: LiveUTIFree.com . It has a plethora of information on cUTI aka chronic UTI aka interstitial cystisis aka embedded cystitis aka bladder pain.

How I got most of my life back, staying on this protocol to manage my disease. This is my regime:

* 2-5 NAC or Kirkman biofilm defense pills each morning on an empty stomach with 1 glass of water (I would not eat till 1 hour later, I took Kirkman as my 1st choice. You could do NAC as it is absolutely a great biofilm buster, but please note that NAC is NOT a good match if you're doing floxacin antibiotics b/c it makes floxacins weaker. If you don't know if your antibiotic is a floxacin, just google it or ask your doctor or pharmacist.)

* Antibiotics: Levofloxacin 500mg 1x a day + Augmentin 875mg 2x a day -- these antibiotics were discovered by the next gen Pathnostics urine testing to be the ones to fight my pathogens. That's why I prefer Pathnostics as my 1st choice of kit. I preferred it way over MicrogenDX and Aperiomics for sure. I do not get paid to say or do this, I'm just being honest on what worked for me. I spent way too much money on other kits and wish I could refund the rest. Ideally, I would say do 2 kits - Pathnostics + Microgen DX and split your wee to both vials. See if there is a difference. Mine had a slight difference but both kits listed 2 same pathogens and 1 kit listed a 3rd. So I targeted all 3 pathogens to cover all my bases. 

* 4 Hiprex a day, not prescribed over the counter in my country (but maybe yours may). I ordered it from Australian site "MyVagina.com". Please note: IT CAUSED BLADDER BURNING FOR THE FIRST FEW WEEKS I TOOK IT, I almost gave up! It was so awful, so go read other FB groups on how to take it slowly. I started 1/4 tab a day at first because it was like litereally pouring acid into your bladder and worked my way up to 4x a day. The bladder burning stopped after a month. So I told people to tolerate it and find a Hiprex buddy to do it with. This was a big turn of the tide for me when I added Hiprex to my regime. If you can't tolerate antibiotics, definitely consider Hiprex alone, but make sure you consult with a doctor or pharmacist about it. The expert about administering Hiprex for cUTI users is Matthew Malone Lee in the UK. Take 3-4x hiprex (1 or 2 tablets with each meal, 3 meals a day) and measure the PH in the urine every 2-3 hours to ensure it is an acidic pH 5 - 5.5 (max pH 6). To acidify the urine, I took methionine (free form) - look at ingredient list behind bottle - you can get this from health stores, or iherb.com - take 500mg/1g with each hiprex tablet. I learned from a girl named June that in order to produce more acidic urine, have more acid-producing food (grains/meat/eggs/dairy/chocolate/black tea etc) insead of the alkaline-producing food (veggies/fruits/green tea etc. the healthy stuff) when taking Hiprex. Vitamin C did not lower pH for me nor for June either. Hiprex works; a patient must stick with it! June recommended to me to measure the pH for a while: acidic urine = higher amount of formaldehyde which kills the pathogens. Lower formaldehyde = only bacteriostatic (as in stops the bacterias from producing more, but does not kill them.)

* 4 Florastor (S.Boulardii) capsules/day to offset antibiotic diarrhea - if you don't do this, you may get severe antibiotic diarrhea and it would be a shame if you became one of those people "who couldn't tolerate antibiotics" because you didn't try this method

* 3 other supplements that prevented floxxing (NOT bladder related so I won't list them but you can find them somewhere on this blog)

Remember that this is what worked for ME, don't just go and copy it because everybody is different. For example, one lady I talk to healed from doing gentamicin bladder instillations with Dr. Michael Hsieh in Washington + PRP bladder injections with Dr. Kohli in Boston + oral antibiotics (not sure who her antibiotic doctor was but I think it might be Dr. Bundrick). Then another lady healed on bladder ozone. Another lady healed doing antibiotics + pelvic physiotherapy. Another lady healed on only antibiotics with Dr. Bundrick. Another lady healed on Hiprex alone with Professor Malone-Lee. And so on and on and on (I read and received dozens and dozens of healing stories). So again, this is NOT a one size fits all cure. This is not a get quick cure. The people who healed ranged anywhere from 6ish months to years to heal. I was seeing 4, 5, 6, 8 years to heal. I even met one lady who took 21 years to heal. Then I met some ladies in old age who still had it. So again, I can't tell you why some people heal and some don't, or why some struggle harder than others. I think you just have to keep searching and pushing to find YOUR cure. I never gave up, I tried so many things until I found the one that worked. Too many people only do 1 or 2 methods, then give up and say nothing works. I tried maybe over 10+ methods. I spent so much money. 

What didn't work for me personally:
* Many naturopaths (1 or 2 were legitimate for me, but most were just money suckers who wanted to do endless expensive tests to fill their pockets)
* Many supplements (scam, waste of time, not cures, waste of money)
* Acupuncture, massage, yoga, meditation (waste of time, placebo, waste of money)
* Traditional Chinese medicine (this worked for me up to a certain point, then I completely stopped and switched to antibiotics + Hiprex which did the job far more efficiently and powerfully. But there were ladies who couldn't tolerate antibiotics and healed from Chinese herbs, so again, it's up to the individual)
* Some "all-natural interstitial cystitis" Facebook groups: I got kicked out of a few. But while so many in those groups are still miserable and sick, and shelling out $$$ for natural cures from the store admins running those groups... here I am out having fun and enjoying life. Groups like that who kick people like me is their loss -- acting like ostriches hiding heads in the sand to ignore possibility of other cures. People who won't acknowledge that there are plenty of different methods, are literally hurting others from finding a chance to heal. So I surmise maybe a few of those groups are just there to make a profit for themselves. It makes me feel sad for the members who are still suffering.

Me from 2018 - 2021:
This disease literally ran me into the ground mentally, emotionally, spiritually and financially during those years. I was a former shell of who I used to be. I was depressed, sick, suicidal, and all aspects of my life suffered for several years starting in 2018. Then 2022 was the turning point. My miracle year? No, not a miracle. It's called Science. Medicine. The combination of pharmaceuticals. Kirkman Biofilm defense + Antibiotics + Hiprex was the ultimate powerful trio for me that turned my life around. (Honey, garlic, and marshmallow tea got me nowhere). 

Me as of Today:
Today, I'm completely living a different life with new people in my life who started a fresh chapter with me. Do they know about what I went through? A few do. I'm grateful for the very few friends who stuck with me until the very end. Some people came and went in my life, others couldn't handle my disease and disappeared. And that's fine as it is not easy to be a lover or friend of someone who was this ill. I am grateful for where I am today, and so grateful for the people who stayed with me until the very end and are with me right now.

If I get a regular UTI again, I know what to do this time. Take high dose powerful antibiotics for it asap and at least stay on it for 14 days to a month. So this is my plan: I have pathnostics kit at home sitting empty. If/when I get a regular UTI in the future, immediately pee into it and send it off. While it's taking 1-3 days to send off, I go visit my family dr and get antibiotics. Then when I get the Pathnostics back, it will tell me which antibiotics I should be on. Then I make the switch if I'm on the wrong one. But for now, from my records, Ciprofloxacin and Levofloxacin are my powerhouses so I'll make sure to tell the dr to prescribe those first. Now, I'm not sure if I would add Hiprex to that or not for a regular UTI, I'll ask others about this in the near future.

I don't know when I would touch this blog again. Probably never. But if I don't blog for a very long long long time, consider this blog ended. I just wish everyone the best and hope you find the right people and information to get you through your journey. It's not going to be easy. It could very well be the most challenging thing in your entire life. But where there is a will, there is a way. 

As of 2022, I would say, start with 1 or more of these following people:
LiveUTIFree.com (online)
Dr. Stewart Bundrick in Louisiana
Matthew Malone-Lee in UK
Dr. Kohli in Boston
Dr. Sevinc in Turkey

There will probably be more new doctors and new technology on the horizon as this blog ages and becomes outdated. I hope this little blog will continue to help many more with this disease and give hope. I never realized this blog would one day bring so many people to contact me. But as time went on, I closed down all my cUTI social media accounts and I stopped all forms of communication as the emails and phone calls were incredibly overwhelming. It was time for me to move on. I hope this blog gives you hope and motivation to battle your bladder disease. It will not be an easy journey. Oh hell no, it will definitely not be easy. It was and always will be the worst thing in my life that I ever had to contend with. (I met a few ladies who battled different forms of cancer and this and they all said that "Cancer was a walk in the park" / "cancer was a lot easier" compared to having this bladder disease). 

Until next time.... if I ever do decide to write again here.
But I think I won't, because I'm just tired of writing and hearing about interstitial cystitis this, chronic cystitis that... so I'll say goodbye. 

xoxo, Lexie