I’ve been really lagging on updating my blog and writing this post. I meant to update sooner, but I think I was too busy feeling sorry for myself to sit down and actually write this. As fate would have it, the same day I wrote the post about being in remission (which was also the day I had spoken with my doctor), my symptoms came rushing back that evening after dinner. So I was symptom-free for about 4 days (while sticking to the Fast Tract Diet and Keto/lowish FODMAP) just to have it all go back to the way it was. I emailed my doctor that night and waited….. and kept waiting…. and waited some more… until 3 days had passed. I then called and left a message requesting a call back. I still heard nothing for another day, and then it was the weekend, so I called back again on Monday. I hate to be that patient, the annoying one that won’t go away, but at the same time I was like “OK, we probably got the bacteria numbers down at least, so I wanna keep treating if we aren’t going to retest”. I was feeling pretty anxious which I’m sure didn’t help matters. The Monday call also went to voicemail, so I left another message.
The same evening, I finally got the call back, but I had missed it thanks to the awesome cell service at my new apartment (UGH!). Finally, we got in touch the next morning, and my Dr. advised that I should do another course of Rifaximin and Neomycin. I went and filled the script that weekend, and I’ve been on the antibiotics (round 2) for about 11 days now. It’s going pretty much the same as last time, except less D and more headaches (just nuisance headaches, not severe). So you might say I’m tolerating it slightly better than last time, but I wish I could go back in time just as a reference to be sure. I’ve already made up my mind that I won’t be doing these antibiotics again. The only exception to that would be if my Dr. finally does agree to retesting me, and if we see that my numbers are almost normalized. I just think repeating the antibiotics time and time again will cause some level of resistance (I know Rifaximin is supposed to be good about not creating antibiotic resistant bacteria, but I am leery about that).
I’ll follow up with my doctor again after this round of treatment and I plan on insisting for another breath test, and also getting the IBSChek test finally done to figure out if I have the autoimmune type of SIBO caused by food poisoning. I wasn’t sure it was necessary before, but after speaking with a few others and participating online in the SIBO Symposium this past weekend (side note to any of my SIBO readers: you should absolutely 100% pay to participate next year or on future SIBO talks! I learned so so much about this condition and was able to ask Dr. Pimentel a question! I can’t stress enough how helpful the Symposium was for me), I think it could provide a lot of valuable information as well as potentially provide me some closure to know what my root cause is.
On a somewhat related note, I will be writing a blog post on some SIBO Symposium highlights once the recordings are available to me in a few weeks. I missed a few of the talks unfortunately, but I’ll be watching and re-watching, and take some notes for you all to share. I am not a doctor so obviously this will be written from a fellow patient perspective, but hopefully you all can find it helpful. The presentation given by the FODMAP queen, Kate Scarlata, especially stood out to me. As someone with a past of eating restriction, I am always on the lookout for my past behaviors controlling my present mindset. I’ve been concerned lately that the need to stick to a Keto diet is starting to make me fear carbohydrates in an unhealthy way. Yes, Keto and Fast Tract have been helping me, but I haven’t at all experimented yet with adding more carbs (so no longer at a ketogenic level of ~20 net carbs per day). I thought I was doing myself a favor by going to Keto levels because I’m also wary of being on the brink of ketosis (such as eating 50 net carbs) and feeling terrible because my body wouldn’t know whether to use glucose for energy or ketones. I would like to get over that apprehension though, and feel like I can safely eat some carbohydrates without being too symptomatic.
Kate really stressed during her presentation that none of these various SIBO diets have been studied and proven to help people with SIBO. The most science-based of the diets is the Low FODMAP diet, which has been proven to help people with IBS (not SIBO), so this is the diet she most recommends and uses with clients. She also stressed the importance of a short elimination period, figure out your FODMAP triggers, and modify the low FODMAP diet to fit your needs! The other thing that was stressed is that these diets won’t cure SIBO, they are purely for managing your symptoms. I think so many of us get extremely stressed about the diet, myself included, thinking if we slip up occasionally that we’re feeding the bacteria and cannot heal and recover. I’m now realizing that what we do 80-90% of the time should be more than sufficient! It’s OK to go out to eat for a special occasion and not worry too much — obviously you have to accept that you may have some discomfort from eating off plan but for a lot of us, I think that’s more healthy than the alternative of deny, deny, deny, and then (for some of us) binge. Now, I’m saying enough is enough. I’m going to start working with a dietitian who can help with getting over the fear of carbohydrates and guide me to eat to control my symptoms. I hope to anyone reading this that feels the same way has the courage to find a practitioner that can help them, too!