Yesterday marks the 1.5 years since being floxed.
This is hard for me to write. I’ve been struggling with feelings of despair and some depression. But I am constantly reminding myself that the levels of pain I’m experiencing are lower than they were a year ago. 
Last I wrote, we were looking for another doctor. Update: We were turned down by three. (One doesn’t believe yeast can exist in the gut. Another, after looking at my labs, declined to see me without offering a reason. And the third said he couldn’t offer anything more and they don’t do SIBO testing.) I gave up looking because it became too emotional and have continued forward with the doctors in Georgia. Adam however, has "had enough" and scheduled an appointment with another doctor at UT Southwestern who may or may not be helpful.
Now it’s time to self check. If you aren’t interested in details, feel your attention wandering, and if you’d rather NOT see lab mumbo jumbo, I suggest you stop reading now. I’ll never know. The bottom line is, I’m not better.
Otherwise, let’s dig into the ugly stupid details shall we?
After trying THREE different treatments to kill the SIBO (small intestinal bacteria overgrowth) I was still in pain and each time one failed to "cure” said pain, my heart broke. And frankly, I think it was baffling to my doctor because he sent me for a CT scan to see what else might be awry. But the only discovery was inflammation in the GI tract, duh. (Well, there’s a punctate non blocking kidney stone in my left side but hey, no one is perfect right?)
So, the doctor ordered another stool test which I mailed in just before Christmas. Yes friends, poop travels via mail. Wash your hands.
We had a WONDERFUL Holiday by the way. I knew results were going to take up to four weeks to come back so I was able to forget about things while we were in California. I also shoved my candida diet into the corner and ate whatever I wanted, which was probably a mistake but for my emotional and mental health it was ABSOLUTELY necessary and I don’t regret it. “But...” you'll say after reading further.... NO. No regrets.
And then Christmas was over and the test came back.
Good News First? Okay, I aim to please.
Beneficial Flora: There has been improvement in the good levels of bacteria. Bifidobacterium and Lactobacillus are high priorities. We want them to be in the 3s and 4s. Gotta get that Lactobacillus up!
Dysbiotic Flora (sibo): As you can see, two of the three are GONE! As per my request, the doctor put me on the least dangerous, 7 day antibiotic as indicated by the test to kill the Klebsiella oxytoca.
The Sad News
I finished the antibiotic for the Klebsiella Oxytoca two weeks ago. Again, no discernible improvement.
The Candida: No improvement since May. NONE! Here's where you'll find me in a teary pile upon the floor. The results say “few” but we're looking for levels of none-rare. Which means this STUPID diet I’ve been on hasn’t worked since May of last year! I’ve been in food hell for a year and a half, eight months of it utterly futile.
Ruminating over where I went wrong, and asking the nutritionist some questions, I’ve discovered a few things I’ve been eating that probably weren’t helping. Sniff sniff. So I’m doubling down and going to be extra vigilant. I have to do the candida diet for 3-4 more months and I’m back on a Nystatin Rx.
Now I’ve reached the point where I’m asking myself...do I tell you more? Have we already reached levels of TMI? Meh. Why not dig all the way in?
Secretory lgA: This is “secreted by the mucosal tissue and represents the first line of defense of the GI mucosa and is central to the normal function of the GI tract as an immune barrier.” Have you ever wondered if there was a way to measure how healthy your immune system is? Here’s one. In the beginning this number was too low. Now it’s WAY too high which tells us my body is trying to fight whatever is going on. I suppose that’s a good sign, or a bad one, depending.
Short Chain Fatty Acids: Now, if you’ve made it this far, get this: "SCFAs are the end product of the bacterial fermentation process of dietary fiber by the beneficial flora in the gut and plays a vital role in the health of the GI as well as protecting against intestinal dysbiosis. Lactobacilli and Bifidobacteria produce large amounts of short chain fatty acids, which decrease the pH of the intestines and therefore make the environment unsuitable for pathogens, including bacteria and yeast.” WHOA!
And now we’ve come full circle! Sooo interesting—to me anyway. And guess who’s not making enough SCFAs? Could this also be another reason why I feel burning and soreness? I’m now taking a Butyrate fatty acid supplement and a digestive enzyme. Please work. Please, please.
This recovery is, no doubt, incredibly tricky.
I’m supposed to update the doctor in about a week. Having felt no improvement, I’m not sure what he’ll decide to do. I would guess he'll want to finish the 3 months and then perhaps order yet a fourth stool test or maybe a colonoscopy? Colon hydrotherapy might be brought up too, which scares me a bit.
So there. No nutshell. Everything out.
BONUS TMI:
The other day I was thinking about ALL the body parts and bodily liquids I’ve surrendered to someone else in the past two years up-to-date and it made me laugh out loud.
kidney ultrasound
colonoscopy
cystoscopy (camera up the urethra into the bladder, the worst by far)
upper GI endoscopy (down the throat into stomach and part of small intestine)
transvaginal ultrasound
pelvic exam
pap smear (of course, but we have to count it)
EKG
saliva test
stool tests
urine tests
breath test
several blood tests (food sensitivity is measured using blood too)
full abdominal ultra sound
full abdominal CT scan
COULD THERE POSSIBLY BEEEEE ANYTHING LEFT TO LOOK AT? My brain, I guess. But that’s not going to help anything.
Actually, there are two more for the list...but that’s for another post. Titillating.
P.S. As a reward for reading this far I’m going to tell you about this AMAZING one piece jumpsuit I’m wearing. (With the right shoes it could pass for streetwear.) It’s like wearing a sweatshirt on your whole body. Yum. It has FOUR pockets, two of them zip closed, and a drop-crotch. I LIVE in this thing, especially when I’m in pain because there’s nothing huggin’ my middle and it’s so cozy. Find it on Amazon. Click here because you desperately need one...or two.
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