Hello everyone! I posted a very long post of what I’ve been through over the past few years last year. I haven’t been active the last 6+ months to protect my own peace but I do want to keep updating periodically to help anyone in the same position looking for some guidance. A little TLDR recap of what ive already went over: 3 years of medical gaslighting, misdiagnosis, & being talked to crazy by medical professionals. An unfortunate situation with health insurance making it so much harder for me to continue seeking help.
Where I left off, I finally got a positive diagnosis for SIBO. (I found out on my own what I could have going on & asked them to test me for it.) I spent so much time, energy, & money trying to treat myself and doing research on PCOS when I was misdiagnosed. I fell into such a horrible depression. I didn’t want to do that to myself again when I was finally diagnosed with SIBO.
I was prescribed xifaxan & that’s it. I was told no information about SIBO other than it’s a bacteria inside your intestines. I was not informed about the low fodmap diet & when I asked if I should be on one they told me no. They did not warn me what so ever about how intense xifaxan is. They didn’t tell me it could come back. Just here you go take this you’ll be fine! I got 10x sicker than I was before. I now on average go about 9 days without any bowel movement & I need to take laxatives to go. I was considering going to the hospital when I made my last post but did not bc I no longer trust doctors and was not about to put myself through all that to not receive any help.
Since my last post, I have returned to the doctor. They canceled my appointment the day before after I traveled two hours to be there. When I tried to message them through their portal & call them I got no response. I had to show up in real life to force them to reschedule my appointment. They rescheduled me with a different nurse practitioner than who I originally saw.
I’ve done the research by this point so I could advocate for myself. I told her that I was not informed there are different variations of SIBO & I believe that I have methane SIBO but was treated for hydrogen. She responded to me “I don’t know what that means, that’s why you don’t go on Reddit.” After she said that I knew exactly how this was going to go. I tried to change my approach to ask her questions rather than TELL her since I clearly offended her. She said to me “well you can just ask people on Reddit that can’t you?” When telling her my symptoms she can see on my chart medications I take. (I take vyvanse for adhd) I told her that since taking xifaxan I’ve had such insane brain fog & disassociation. She said that isn’t a symptom and you just have ADHD. I showed her photos of what happens to me & she said in these exact words, no exaggeration, “well yeah if you don’t shit for 9 days you’ll be bloated.” When I reached this one photo of me she actually stopped and gasped MID GASLIGHTING ME.
I did not report her because I am just DRAINED. & even though she spoke to me in the most unprofessional disrespectful way I have ever been spoken to in my life, she was trying to schedule me for a colonoscopy and blood work which is more than anyone else has done for me. I did feel though as if I already have a positive diagnosis and know what the problem is & she’s ignoring that and just looking for other issues bc she doesn’t know how to treat what I have.
Since this happened, this place has not updated my medical charts. The literal ONLY thing they had listed was that I take vyvanse. I had to HARASS THEM to update it for months. I left an angry voicemail this week (you cannot get a hold of them without leaving a voicemail) & they did NOT call me back but instead tried to in secret update my charts as if they’ve always been there. They put documents they never showed me such as the low fodmap diet info on there. Fortunately I have evidence they did not update this until yesterday & the email notification of the documents being uploaded.
I apologize for how long this is if you’re still here thank you! What inspired me to come back & update everyone on my journey despite not having good news is I finally saw my test results they never provided for me.
My score was a 76. I now have evidence that I have methane SIBO, not hydrogen after learning how to read the chart. I already knew this was the case but i feel a mixture of so many different emotions with it being confirmed.
Although I am so angry for the medical incompetence & me being sicker than before after allowing myself to trust a doctor again I feel this immense relief also.
I’ve taken a 3 month hiatus on my health journey because I got a new job & had to work there for 3 months to get on their health insurance. I’ve spoken with my neighbor who has Crohn’s disease & went through what I’ve been through for 10 years. She gave me recommendations for doctors she sees at mount Sinai. I feel a sense of hope I have not felt in a very long time that I was failed by this doctor, but that does not make me incurable. I will keep everyone going through this updated on my continued journey, especially if it’s a success story. & absolutely provide anything that has helped me if I can.