My poor sons.
It’s not enough for their mom to be blogging all over the place, but here I am writing about tinkle in front of the whole internet. Because, you see, tinkling is very, very important. And if there is a problem, the effects can be more devastating than you realized.
I described here how, in spite of my CVID diagnosis, once I began weekly plasma infusions, I enjoyed a longish period of good health. But in the fall of 2014 I began to have chronic urinary tract and kidney infections. ( I suggested that if you have never had a UTI, and really want to know why I complain so much, drink a gallon of hot acid and try to pee. Go ahead. I’ll wait.)
For the first infection, I was treated aggressively with antibiotics and within about 48 hours I began to feel better. I finished that first course of antibiotics, and felt completely well.
For two whole days.
Within a week of finishing the antibiotics, I was again feverish, doubled over with pain, and fully symptomatic again
I returned to the doctor, who did another urinalysis – except this time it came back “clean” – with no bacteria. He prescribed another course of antibiotics because of my weakened immune system, and once again, my symptoms improved.
Until the prescription ran out.
After several rounds of this, and multiple “clean” cultures, my doctor referred me to a urologist, and suggested that I probably had another autoimmune disease called Interstitial Cystitis, which sounded really awesome.
Cover your eyes if you don’t want to read more about tinkle, because here is where I really go into detail. Interstitial Cystitis (IC), also called Painful Bladder Syndrome, is defined by the American Urological Association as a “chronic condition causing bladder pressure, bladder pain and sometimes pelvic pain. The pain ranges from mild discomfort to severe.” The “working theory” is that UTI’s damage the bladder wall, and triggers the Interstitial Cystitis. That “damaged bladder wall” made life absolutely miserable for me – because – in laywoman’s terms, just as a damaged esophagus, or damaged stomach wall- can be irritated by certain spices and foods, people with IC will have flares triggered by “problem” foods, and will feel like they have a full blown UTI. Except the cultures repeatedly come back “clean.” (Remember when you would take your miserably sick child to the doctor begging for him to find SOMETHING, and he says it’s a stupid VIRUS? It was bad enough being sick and symptomatic, but having repeated “clean” cultures was demoralizing. Because I knew that something was wrong.)
I once stood in the kitchen eating a handful of chocolate chips, and within an hour was completely bedridden with a full blown flare. I became an IC “food police” and eliminated all offending foods from my diet, being pretty much relegated to spring water, pears, and chicken.
Imagine feeling like you have to pee 100%of the time, with a bruised bladder, and severe pain. And then imagine trying to work – which included speaking in public, leading summer camps, teaching children, and leading groups, while feeling like this.
I had about 6 miserable months of this, while at the same time experiencing gallbladder disease and battling symptoms related to undiagnosed liver diseases. Right before I had my gallbladder removed, I was hospitalized with facial cellulitis (this is a weird thing my immune deficient body does when I am unwell.) They treated me with IV antibiotics – and, wouldn’t you know it, the Interstitial Cystitis abated. After the gallbladder removal and liver biopsy, I juggled multiple complications, including a wound dehiscence and collapsed lungs. In order to keep infection at bay, they kept me on high doses of antibiotics. I slowly got stronger – healing from the surgery and the complications, and guess what – I was also free from UTI symptoms.
Until I went off of the antibiotics.
And then the full IC “syndrome” flared again and it was back to pears and water.
During my second trip to NIH, both the hepatologist and the immunologist explained that my “second” liver disease – Nodular Regenerative Hyperplasia, was a direct result of chronic infections and medications, and they were adamant that we get to the root of it all. Female urology/Interstitial Cystitis is NOT one of the specialties NIH is known for, so they referred me out to someone else. But I actually went totally “off the grid,” which I will explain in a bit.
Leaving NIH was sobering that day, knowing that I had not one, but two liver diseases, and also understanding that one of the diseases would continue to worsen until we put the brakes on the Interstitial Cystitis.
And here’s where that “trust your gut” instinct paid off – (that, and what I consider to be a Holy Nudge.) To quote one of the smartest people I know: you can’t “unknow” what you know. And I knew that every time I was on antibiotics, my symptoms abated. Despite the fact that the AUA strongly comes out AGAINST long-term antibiotic therapy, I knew that pathogens were causing my symptoms.
And here is where I step back and remind you that YOU are your own best advocate, and I am not recommending a course of treatment for you. I am sharing my experience, and how it has improved my daily life.
Back to tinkle.
I dove into research, and through an online support group, read about a practitioner who was successfully treating women with Interstitial Cystitis. Even better was the fact that she found a lab that identified the actual pathogens – the INFECTIONS – by using molecular testing. Better still was the fact that she is located in Washington DC. I was able to correspond with women from all over the country who were flying HERE to receive treatment and getting relief after years of misery.
The downside? She does not accept insurance. She is an “out of network” provider, and we have to pay up front for treatment. I first called my parents and asked if they’d be willing to help us with the cost of treatment, and then I called for an appointment. And though there was a four month waiting list, I explained my situation – and the fact that these untreated infections were damaging my liver, and they got me in the next week. When I got to her office, the waiting room was full of women who had come from all over the country, and their sense of relief was palpable. We bonded over the shared experience of putting our lives on hold due to IC, to be told over and over there was no infection, and no effective treatment on the horizon.
I’m going to fast forward a couple of months to bring you up to date on where I am with treatment, because I envision more posts about my treatment and progress. Here’s the bottom line: Her treatment regimen is working for me.
It turns out that 98% of her patients have Lyme disease – with either actual Lyme or active Lyme coinfections. For women, Lyme often affects the bladder, causing infection to embed, and remain undetected due to biofilms.
After meeting with me, Ruth shared that she strongly suspected that I fell into this category. She drew lots of blood, and then I mailed my pee to Texas.
(Because the lab is in Texas, silly, I’m not that insane. Stay tuned for my new country song called, coincidentally, “Mailed my Pee to Texas.”)
Within a week, we began getting answers. My bladder was full of embedded bacteria – high, high bacterial loads of e coli, pseudomonas, and enterococcus. I tested positive for several lyme co-infections, and most notably, mycoplasma. My mycoplasma tests were the highest she had ever seen, (the range being 0-99, and mine was 1794)and there is quite a lot of evidence pointing to mycoplasma infections causing damage to the liver. I began treatment for these infections, and continue to this day.
I am still absorbing the fact that in addition to CVID, I have two liver diseases and Lyme. But I am also still dancing with relief to have answers and PROOF of what I suspected all along. I KNEW there were infections, because I felt SO MUCH BETTER when I was on antibiotic therapy for other issues. It was demoralizing and disheartening to be told again and again there was “nothing there.”
I will likely be on long-term antibiotic treatment for a full year. After a course of antibiotics, we send off another “sample” to the lab in Texas, and the bacterial load decreases. We’ve wiped out several strains of infection by also hitting the biofilms. And I’m on multiple vitamins and nutritional supplements to help my body stay healthy during treatment.
My team at NIH is thrilled that we’ve found the source of the infections, and are on board with the treatment, hoping – as we are, that by eliminating these infections, we can slow the progression of the Nodular Regenerative Hyperplasia.
And here is one last piece of the crazy puzzle that is my body…I just discovered TODAY that The BioMed Journal of Medicine has published an article on Primary Biliary Cirrhosis demonstrating that both mycoplasma infections (check) and E Coli (check, check) precede diagnoses of Primary Biliary Cirrhosis in some patients. And in fact, are PREDICTORS of the disease.
And finally, I end my post about tinkle.
What a long, strange trip it’s been.
Read more about my story here.