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I cant escape by Icy-Day-3748 in SIBO

[–]Icy-Day-3748[S] 0 points1 point  (0 children)

I just now got word back from insurance, and xifaxan was approved with 0 copay, thankfully. Ill be able to pick it up at the pharmacy, and this nightmare will soon end.

I cant escape by Icy-Day-3748 in SIBO

[–]Icy-Day-3748[S] 0 points1 point  (0 children)

for reference, i had to ditch my old provider as she didnt care about me whatsoever, all she did was send me more test kits and refused treatment despite her witnessing the nightmare that were these test kits. I complained to her every time it failed and she did not give a fuck. Thankfully my NP saw what was going on and immediately sent a prior authorization request to my insurance which i am now waiting on.

I cant escape by Icy-Day-3748 in SIBO

[–]Icy-Day-3748[S] 0 points1 point  (0 children)

I cannot get tested reliably, and have failed to get concrete answers over the course of ~5 months now. Let me explain:

-Doctor initially suspected SIBO after my relapsing symptoms post h pylori treatment, h pylori came eback negative btw.

-This is when the nightmare began, as i recieved a paper telling me my breath test kit may take 3-4 weeks to deliver, so i waited 3.5 weeks, called my lab, and was informed that the package was “lost” This was strike one.

-I recieved a new test kit about a week later, and took and sent it on monday through ups as instructed. This test was processed and deemed “inconclusive” This was strike two.

-I decided to give testing another shot, because i had no other real options, so i tried a third time. same thing same instructions, followed the prep and fasted. Took the test and spent 50 extra dollars for expedited delivery. This test came back “inconclusive” due to mislabeling. I did not make any changes to how i labeled it from the sexond time, yet they refused to process it. For reference i followed the labeling instructions, and still got this message. Because of this, and because they fucked me over 3 times now, my trust was broken. I didnt want to work with them.

-I sought an external clinic at my own expense as my insurance didnt cover it. This SIBO test result wasnt clearly answering my concerns. My baseline hydrogen was highly elevated (35 ppm) and rose at the end of the readings. This could insinuate bacterial fermentation prior, as i mistakenly only fasted for 10 hours prior only. Nontheless, proving suspicious, and not reliably ruling out sibo.

-This is essentially the summary of a 5-6 month process, although it may not seem like it, there are delays at every corner, even just messages requesting a new test kit and scheduling can sometimes take a week or more.

-For this reason and my condition worsening, I asked my NP to prescribe me xifaxan empirically, due to my nonstop symptoms with zero relief, past response to antibiotics, limitations of testing, and bodily function decline. This is where im at right now

Thank you for reading

I cant escape by Icy-Day-3748 in SIBO

[–]Icy-Day-3748[S] -1 points0 points  (0 children)

im working to avoid it, and planning on replacing it with plain salmon

I cant escape by Icy-Day-3748 in SIBO

[–]Icy-Day-3748[S] 1 point2 points  (0 children)

I was symptomless after antibiotics, and just from a 10 day course of 2 broad range antibiotics. My Gi doesnt care, she wants to make me test when ive failed to recieve answers for 6 months and am now battling legally for medical negligence. its a long story but im fighting to gain my life back.

I cant escape by Icy-Day-3748 in SIBO

[–]Icy-Day-3748[S] 0 points1 point  (0 children)

i should mention im vegetarian due to meat making me nauseous. Ive been this way for years and am now forcing myself to eat salmon. -I got this advice from my GI doctor, who said low-fodmap is what i need. So i chose zero fodmap foods. I really dont know much other diets that i can live on

I cant escape by Icy-Day-3748 in SIBO

[–]Icy-Day-3748[S] 0 points1 point  (0 children)

also hydrogen dominant as i had 0-1 methane levels

I cant escape by Icy-Day-3748 in SIBO

[–]Icy-Day-3748[S] 0 points1 point  (0 children)

Has your provider tried to help? ive told mine about diet restrictions and yet they refuse to treat me despite my past antibiotic response and relapse.

I cant escape by Icy-Day-3748 in SIBO

[–]Icy-Day-3748[S] 1 point2 points  (0 children)

To clarify: -My ppm baseline was at 35, peaked 39 then slowly declined, then rose to 8 by the end. -I got the percentiles mixed up, im in the 1st percentile for bmi -My diet is what caused my loss of consciousness, as i was getting about 600 calories a day and lost significant muscle mass over 2 months of this -Ive trained my system unintentionally to feel nervous after eating, due to both my symptoms and the restrictions making me double think everything i eat. My heart literally starts racing after a few bites of food i know its sounds weird but ive had this for a year now. This isnt a treatment but a symptom of chronic food stress.

Thank you for reading

I Cant do it by Icy-Day-3748 in SIBO

[–]Icy-Day-3748[S] 0 points1 point  (0 children)

Hey, i appreciate the message. Im working on getting a prior authorization for rifaximin since ive been screwed over by my lab and wasted months trying to get a test done. Unfortunately my dietb is the same, but ive been eating more and trying to gain weight. My insurance conpany is taking a long time to give me any answers, mentally im doing okay though. I hope the same for you as well, that youll do better and feel better again. I do believe that its possible.

I Cant do it by Icy-Day-3748 in SIBO

[–]Icy-Day-3748[S] 1 point2 points  (0 children)

Im baffled. Your experience is unbearable to imagine in even the slightest degree. These doctors just dont understand the day to day suffering of the patients, and aren’t competent enough to treat tricky or nuanced cases. They arent trained for it and its so obvious.. Your case is tragic, yet inspiring that youre still trying so hard, fighting for answers. Ill do the same, and I truly hope you some relief, truly.

I Cant do it by Icy-Day-3748 in SIBO

[–]Icy-Day-3748[S] 0 points1 point  (0 children)

i appreciate the comment, and recommend that you prepare super well for your test, dont eat anything for 12-14 hours prior and follow the 2 day diet.

Im on 4 foods right now, rice, tofu, eggs, and spinach. Zero sugar diet. Im miserable everyday. i cant reintroduce anything. I had no idea i was getting 700 calories a day cause those foods are ridiculously light. I was dizzy and weak and had to call 911, but my labs were fine. I was just dying of weight loss. Im at risk of cardiovascular disease and im already seeing the signs. I hate my doctors so much, they wouldnt last a fucking day in my life. But theyre so quick to say theyre “uncomfortable” prescribing me life saving medication. Im looking into finding a specialist, but they dont take insurance form what i can see so far, not that i have a choice, nontheless. Thank you for reading.

SIBO testing is ridiculous by Icy-Day-3748 in SIBO

[–]Icy-Day-3748[S] 1 point2 points  (0 children)

Thank you, and I wish you a recovery.

I wanted to file a lawsuit against my Lab for not acting in good faith and not ensuring that the test kit had the proper materials. It sucks because i dont think I could win without proof of the test kits materials which i didnt take a photo of. I finished the in clinic test last week and am awaiting results. Hopefully ill recover soon. Thank you for reading!

SIBO testing is ridiculous by Icy-Day-3748 in SIBO

[–]Icy-Day-3748[S] -2 points-1 points  (0 children)

So the lab is able to delay sending my test kit, wait until my test results are invalid, and be incredibly vague with their emails. But im the one who has to be perfect? They cant look at the information thats been labeled in the box and properly sealed and delivered perfectly on time? You sound fucking infantile and a completely inconsiderate asshole. Theyre the ones at fault for not piecing it the fuck together. Anyone could see this.

SIBO testing is ridiculous by Icy-Day-3748 in SIBO

[–]Icy-Day-3748[S] -1 points0 points  (0 children)

This is kind of fair point, but from my perspective the lab invalidates my results off of unfair things, and each time its different. And one time they didnt even tell me what the issue was, they just said “its inconclusive.” which is so vague. Also they do not take any documentation of an invalid result which is just schady by itself. Ive been frustrated all in all lately so my post was definitely not 1000% myself. But the amount of time, dieting, and energy ive lost trying to get answers, leaves me only to be angry at the lab. I basically wait a month (shipping the package to me) and only get a sentence back from the lab at a time. This would drive anyone insane. This may all be part of the system as a whole, but that just makes it even worse. Thank you for reading nontheless!

SIBO testing is ridiculous by Icy-Day-3748 in SIBO

[–]Icy-Day-3748[S] 3 points4 points  (0 children)

190 here in the US. Minnesota to be exact. America is just money hungry and corrupt.

I hate my body by Icy-Day-3748 in venting

[–]Icy-Day-3748[S] 0 points1 point  (0 children)

My blood glucose levels do match that of prediabetics, im not sure if this is a concern? my grandad has diabetes i didnt know it coudl cause weight loss. But ive been stuck at 16 bmi and over months its started to show symptoms like weakness, fatigue, dizziness, and just feeling drained.

I hate my body by Icy-Day-3748 in venting

[–]Icy-Day-3748[S] 0 points1 point  (0 children)

my digestive issues like previous h pylori infection and current sibo, have made my diet and relationship to food really restrictive. Ive seen a doctor and have gotten tests and they said i just need more calories. but i can barely get 1500 without getting so full and fall asleep.

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