Hypotheses and Experiments

So, I have a theory. Mind you, I’m no doctor, medical professional, or scientist. These are simply my own hypotheses based on personal experience and physical intuition. If you’ve been following my blog then you are aware that I deal with a lot of physical pain. Over the last few years talking to medical professionals, fellow patients, and experts, I’ve come to the belief that nutrition and exercise are the solutions to living with less symptoms. I have applied this theory directly to my EDS... but what about my other conditions? What impact could nutrition have on my UTIs?

For me, battling chronic UTIs is the one condition I feel I won’t survive. While waking randomly in the night with my hip/rib/knee subluxed, losing my ability to walk on flare days, or managing scorching nerve pain is certainly not my idea of a good time, the UTIs are worse. I had dealt with a few UTIs over the course of my life before the chronic UTIs set in. If you asked me before how bad I thought UTIs were, I would have used words like “highly unpleasant,” “painful but short-lived,” and maybe even “easy to manage.” That all changed when I started developing them chronically. Since my UTIs became chronic, each one seems worse than the last. My whole body burns as I battle these infections and the constant antibiotics make me feel weak. The pain is crippling, I feel chained to my bed, and I count the seconds waiting for my meds to kick in. I will never be able to fully explain the physical devastation chronic UTIs cause me. Not only do they shut down my body physically, they also take a severe toll both mentally and emotionally.

Crippling UTIs are my rock bottom. This is the disease that drives me more than anything to find a solution. Tragically, there is very little research or data on what causes chronic UTIs and there is even less data on how to cure them. No one, including my doctors, seem to have any recommendation. The only solution I’ve been given is to take daily antibiotics indefinitely and possibly permanently. This can’t be how the rest of my life goes. I can’t spend every day of the rest of my life nauseous, weak, and dizzy waiting for my daily antibiotics to cause a permanent fatal condition. I also can’t spend the rest of my life fighting off chronic UTIs! I can’t live like this; I just can’t. My only solution is to find the answers myself. Essentially, I have spent the last year “experimenting” with my body. I am so desperate for a cure that I’ll try anything. Slowly over the years I discovered things that are true for my body and my experiences with UTIs. Many of these discoveries cannot be explained by doctors. Whether these personal discoveries have correlation or causation is currently unknown, but I’ll share them with you anyway.

Here are some of the personal discoveries I’ve shared with my doctor:

- I told my doctor that I’d feel a UTI coming on and then often if I ate something calming and solid (like bread) the pain would dissipate.

- Another day I told her that on some days I’d have severe UTI pain within minutes of having a few sips of alcohol.

- Yet another example is when I told my doctor that I could not have Vitamin C as I felt it triggered my UTIs. (My osteopath immediately took the Vitamin C out of my IVs while my urologist said there was no relation between the two.)

These are only a few examples of things I’ve noticed in myself and my doctor’s response to all of them was to say it was all in my head and there was no possible link between any of it and my UTIs. *Please remember that this is the same doctor who still likes to insist half the time that I’m not really having UTIs and that it’s all in my head (you can read about this fun interaction in my blog “Recap and Recovery”).

So, here are the initial experiments I have run to test my own hypotheses:

In response to my doctor saying I could not feel UTIs as early as I claimed and that it was phantom bladder pain, I did the following: When I felt a UTI coming on I went directly to her office to get tested. My pain was not too bad yet so I knew the culture would show no sign of bacteria this early. Each time I’d go in “early” my doctor would prescribe a course of antibiotics for me to take until the culture came in. The culture usually took 2-3 days. Since I always took the antibiotics right away, the infection that was unseen would subside and therefore my doctor would stick to her claim that the pain had been in my head. So, during this particular episode, instead of starting them, I waited just over 24 hours until my pain was unbearable. I went to urgent care and told them I had a UTI. They took a culture and gave me antibiotics to take until the culture came in. I went home and started the antibiotic course while I waited. Sure enough, a few days later my doctor’s culture came back negative but the Urgent Care test came back positive. It was the difference of 1 day and excruciating pain that determined if the test would state I was positive for an infection or negative for an infection. I have run this experiment multiple times with the same result. My doctor says this is impossible, but I know what I’ve experienced time and time again. I could give many other examples of this type of experiment or others I’ve done, but there is one specific experiment I’m currently undergoing that I want to focus on for the remainder of this post: acidity.

Disclaimer: Please know that enduring all of these trials is an attempt to understand what is going on in my body so that I can manage it to the best of my ability. Specifically, when it comes to my UTIs I feel I have little to no support from my doctors and that I’m my only option for finding a solution. I’d never advocate someone go against medical advice, especially if there is a clear and tested solution. I do not consider taking daily antibiotics indefinitely, the only current treatment offered to me, a solution. Again, I’m not a doctor, medical professional, or scientist; I’m simply an intelligent woman fighting to find solutions that work for my health. All that said, let me tell you about the current experiment I am undergoing.

Isolation has not been good to me. Losing access to all my regular routines and health management systems sent me into a tail spin. I lost over a year’s worth of progress due to the COVID-19 stay-at-home orders. This is not a political statement; I understand the reasoning behind the order. It just SUCKS. I was one day shy of hitting my 3-month mark of no UTIs and no antibiotics when I developed a horrible UTI. They have been chronic and recurring ever since. Unfortunately, the only way to manage my UTI pain is to take a medicine called pyridium. As you can imagine, I had to take a lot of pyridium over the last year and a half. I was needing it so often that my body started developing an attack episode about an hour after taking it. I later started to refer to these as kidney attacks since they’d feel like an excruciating contraction radiating from my kidney area. (This is not medically confirmed, but is me trying to best describe what I’m feeling.) Each time they hit I double over in brutal pain unable to breathe or speak through the long contraction. It feels like labor pains only constant and worse. Each time it happens I wonder if I should go to the ER. After a few minutes the pain subsides and I can start to function again. As you can imagine, these episodes terrify my mom (who is a nurse practitioner), my husband (who is a former EMT), and me (you know, the person experiencing them). How am I supposed to survive chronic UTIs when every medication to cure them or manage them threatens to kill me? After the most recent “kidney attack” (the first in over 6months) I was renewed with a fierce determination to find a solution to my UTIs.

I started trying to think about what could relate to my UTIs. I realized that my UTIs usually develop after I’ve experienced a mild and growing pain over the few days prior. This pain is very similar to that horrible searing fire sensation you feel after you have thrown up multiple times and your stomach acid burns in your throat. I wondered if acid could play any part in my UTIs. Throughout my life I heard that acidity kills bacteria, so an acidic bladder should prevent bacteria from growing. After further research I realized this may not be the case. A study posted in The Journal of Biological Chemistry looked into the relationship between urine acidity and infections. Time Magazine summarized this study in an article titled “Your Diet May Be Causing Your Urinary Tract Infections” saying, “Early on in an infection, cells produce a protein called siderocalin that blocks bacterial growth, including the growth of E. coli that often causes UTIs, says Jeffrey P. Henderson, MD, PhD, assistant professor of medicine at Washington University School of Medicine in St. Louis and senior author of the study… Two common factors emerged in urine that had a better ability to resist bacterial growth: it had a high pH—one that’s more alkaline, in other words—and higher levels of certain metabolites formed by gut microbes.” The article continues saying, “Both urine pH and metabolite production may be able to be changed through diet, and doing so could potentially offer a treatment strategy in the future, he says. ‘It may be that we have to adjust multiple things at the same time to get the system to work well, but the appealing part is this is not an antibiotic strategy,’ he says. ‘It may allow you to keep your normal flora while keeping bacteria out of the urinary tract.’” The article then concludes by stating that doctors in the UK already use alkalizing agents such as calcium supplements to combat UTIs.

This was the first article I came across that discussed scientific UTI treatments that did not involve antibiotics. In case you were worried in the beginning of this post, I do not commence my experiments or trials until I’ve done extensive research and feel confident that what I’m about to attempt will not cause me permanent damage. I always approach my hypotheses and personal experiments with caution and research. This article gave me hope that I may be on to something regarding UTIs and urine acidity. I continued to look for more information regarding this potential connection and came across the aforementioned study written out in detail. The study, Human Urinary Composition Controls Antibacterial Activity of Siderocalin, found that when our bodies experience a urinary tract infection it responds by producing an antimicrobial protein called SCN. SCN helps prevent the infection from growing and then assists in fighting it off. They also noted that SCN cannot survive in an acidic environment. During the study, they noted that those with higher acidic urine struggled more with UTIs. Of course, the study goes into much greater detail about all of this and I encourage you to read it for yourself, but my take home from this study was that there might be something I could do to prevent or cure my UTIs.

I contacted my dietician and told her my hypothesis. The email I sent her read,

“Hey there, I’m about to have a break down! I can’t get these UTIs to go away, I can’t take the pain meds for them any more because they started causing kidney attacks, and my supplements that worked last time (the probiotic you recommended and the Ellura) aren’t working anymore! Everything I am reading says to reduce acidity in the bladder and make the urine pH more alkaline, but then it doesn’t say how to do that! I am desperate. I’m on the strictest diet ever and it’s not helping. I’m losing it and feel absolutely hopeless.”

My dietician, being the amazing professional that she is, offered some quick adjustments (i.e. change of probiotic and emphasize antimicrobial foods such as honey, garlic, ginger, clove, and oregano) and promised to look into the connection between acidic urine and UTIs. After doing a little research, she emailed me back saying, “As I’m sure you have seen, there are not too many research papers on the pH of urine and UTIs and treatment, just the observational studies but I agree it is totally with a try!” She then prescribed me a potassium citrate supplement with the instructions, “When you take it, I would continue to measure your urine pH and make sure it does not go above 7.0 – this can cause stones. Also start slow with 1/2 a pill, 2x per day and work your way up to 1 pill in am and 1 in pm.”

I had been on a strict nutrition regimen for 19 days when my potassium citrate supplement came in. For 32 days I carefully tracked my urine acidity along with what I was eating. My goal was to 1) identify whether acidity seemed to have any correlation with my UTI pain, and 2) identify what foods were potential triggers. After 32 days of meticulous tracking, I was clearly able to identify that urine acidity played a huge roll in my UTI pain. To avoid being influenced by the pH result, I’d write down how I was feeling before testing my acidity. Consistently without fail, on days when I wrote down that I was experiencing pain or the start of UTI symptoms I’d have a pH at or below 6.5 and on days I felt no UTI pain or symptoms the test would show my pH at or above 6.75. My body seemed happiest at a pH of 7.0-7.5, which I know is slightly higher than my dietician recommends, so this is something I need to discuss with her to prevent getting stones as she warned may happen. I did not take the potassium citrate every day, and I still haven’t taken more then one in a day; but even with the minimal on and off use it seems to have had a hugely positive impact. Thirty-two days is not enough to make definitive answers about anything, but I truly believe I’m on the right track.

While this seems to be the first piece of a highly intricate puzzle, finding the ideal nutrition regimen for my health still seems out of reach. Identifying which foods are triggers vs. those I just happened to consume on a flare day or on a day triggered by something else has seemed nearly impossible. For years I’ve been tracking my nutrition, exercise, symptoms, hydration, mood, etc. and I’ve worked tirelessly to draw conclusions from my hand-written data. Throughout this process I’ve also tried every chronic illness app on the market to see if I could find one to help me in this tracking process. This has turned out to be a pointless pursuit. Given that no app exists that meets my needs, I ignited my entrepreneurial spirit and decided to create an app that would support myself and others suffering from various conditions and illnesses. If all goes well, this app will launch in January 2021. While I eagerly await my tracking and correlation app, I’m back to doing everything by hand. I’m moving into phase two of this nutrition and acidity hypothesis. Phase 1 included the initial 32 days of data collecting. For phase 2 I’m going to put myself into an extremely strict daily regimen allowing me to control as many variables as possible. By removing variables such as fluctuating hydration amounts, high activity days, sleep schedules, etc. I should be able to identify the impact food specifically has on my symptoms. I wish more than anything that my app actually existed already because I’m dreading tracking this by hand. This will be the most difficult task I’ve ever taken on in my life. I have never succeeded at positively adjusting my exercise, nutrition, and sleep all at the same time. Not only does this system demand they change in order for this experiment to be successful, it also needs to be near perfect. No slip ups. No cheat days. I’m excited and overwhelmed. I like to believe that I am strong enough and have enough willpower to make this happen. I guess we will find out! Phase 2 starts Monday, September 19th, 2020.