It was the best of times, it was the worst of times. Nope, wrong tale but sort of fitting to my tale too. I got my latest test results back and do not know what to make of them at all, neither do the doctors, even though I’m feeling pretty good these days.
Just a reminder, here is my June 30th test, pretty much a standard looking SIBO test for a methane producer like me:
Now, here is my July 30th test after 10 more days on the Berberine/AlilMed protocol and 20 days on the AlliMed/Neem protocol:
WTF? This thing is a mirror image of the previous test and makes no sense whatsoever. SIBO curves go up, not down or at least usually have the high point somewhere in the first 120 minutes but not before the test has actually begun like this one is showing. I had a Skype appointment with Dr. Keller from the SIBO Center about it and she said they see tests like this but have no good explanation of them – maybe it is “hidden” bacteria, maybe they are reproducing faster as we kill them. They are making it up as they go along. I seem to have zombie bacteria from what I can tell, I kill them and they come back to life but in some altered state. Who knows.
All I know for sure is that the test did change somewhat and to me that is a good sign. I also feel better and have felt better even since I took the test. My gut has had very few symptoms the majority of the time. I’m pooping more normally. I’m eating more foods. I have more energy. I’m sleeping the best I’ve slept all year. I’m even getting out fishing and cycling almost daily. My attitude is much better thanks to family and some of my friends on the SIBO group. On top of all that, I’m gaining weight again and was up almost 5 lbs in 5 weeks from June 25 until last Wednesday.
My biggest complaint at the moment isn’t my gut but my feet. I had a major flare-up of the neuropathy last week with my feet being very numb and painful and a burning sensation going up my ankles and shins. I even had a bit of tingling going on in the hands for a few days. That luckily seems to be going down a bit. Dr. Keller said that neuropathy is somewhat common among methane producers and that the methane is a nerve toxin that can strike anywhere in the body, not just the GI tract. It often subsides when the methane levels drop or at least will stop progressing. I’m going in for an EMG next week and meet up again with the neurologist on the 19th to discuss this further.
Until then, my SIBO plan is to just stick with the AlliMed/Neem for the rest of this month. They have seen this protocol drop 100 ppm of methane in 6 weeks so I will have done it for 8 weeks by the time I test again. If, at that point, I’m not seeing a big drop in levels I’m going to have to go to Plan D which is the elemental diet approach. Hopefully I can keep putting on some weight between now and then so I’ll have some to lose doing a liquid diet for 10-14 days. If that fails to work then I really don’t have a Plan E to fall back on, I guess it is rotating herbals constantly and sticking to this SIBO diet for as long as it takes.
To work on my gut motility I’m having to make homemade MotilPro to get rid of the B-6 which is in it and may be adding to some of my neurological symptoms so I’m doing 1000mg of ginger nightly and will add in 50mg of 5-HTP and 500 mg of acetyl-l-carnatine. I am going to be starting Low Dose Naltrexone (LDN) next week which is a pro-kinetic as well as helps with the Epstein-Barr Virus reactivation I’m also dealing with. It may help with the neuropathy too, who knows. I can’t do any pain treatment for this since that would negatively impact my gut motility and cannot afford that.
I still think this thing can be beaten back and not get the best of me. Relentless Forward Progress!