SIBO comic book by Dr. Sandberg-Lewis from the SIBO Center. The guy also plays a mean guitar singing about the digestive system.
It has been a little over six months since my gut totally exploded after Christmas and started this whole adventure into the world of SIBO. I guess it has really been about 9 months but the first three months or so were manageable, it didn’t become really nasty until the end of December when I went back to my normal rice & bean diet after the candida cleanse we did when I thought this was only candida. It has been six months of ups and downs and still trying to unravel this mess in my gut.
After taking Doxycycline last fall and having gastric distress I went through a whole month of hell and rapid weight loss in January trying to figure out what exactly was wrong with me. When I found I didn’t have cancer but instead something called SIBO I was pretty happy, SIBO seemed like something that could be cleared up in a few weeks. Boy was I wrong. At least with colon cancer you can cut something out if caught early enough, with SIBO you just somehow have to sterilize your small intestine while not destroying your large intestine in the process and then fix any underlying motility issues that allow the bacteria to migrate upstream in the first place. It is a bitch to get rid of as I’ve since found out and while it is there complications abound.
I tried the standard protocol of antibiotics that reportedly stay in your small intestine to do their work. Well, they got out in my case and caused adverse effects and pretty much shut down my digestive system for about a month. That was a big mistake on my part but both the GI people and ND people assured me that this was the best way to fix this thing especially a mild to moderate case of it.
After recovering from that month and losing even more weight I started working with Dr. Christine Bowen locally after everyone else pretty much gave up. I did retest in March and found my SIBO bacteria had been reduced and was technically negative but obviously I wasn’t. I kept losing weight and having all the symptoms of SIBO. Sometimes they would go away for a few days then they would roar back up. I got on a strict SCD diet which has helped but it seemed like as soon as I’d build up to ‘real’ food I’d relapse and be back on baby food for a week or longer. My weight stabilized at a low level of around 150 lbs which is 20 down from normal for me but at least wasn’t dropping any longer. Other effects though were cropping up. I developed neuropathy in my feet which kept getting worse and worse, it felt as if my toes were shot full of novocain. I tried B12 shots to no avail.
Finally after 3 months on the diet I had a major relapse in late May. My weight went down below 150 and I was pretty much bed/couch ridden for about 10 days. Back to baby food again. As this relapse tapered out I decided it was time to get serious about a non-dietary approach to this. I started going in for IV vitamin shots every 2 weeks which has helped with the numbness in my feet and gives me a good energy high for about 5 days. I started doing herbal antibiotics, slowly ramping up and now on them for a month. I’ve found several people who have had success with herbals and a recent study at John Hopkins showed that they are just as effective, if not slightly more effective, than the standard Rx protocol. So, I have a lot of hope that this will work and I must say I feel better after a month of this. I went to a neurologist a few weeks ago and the good news is that I have peripheral neuropathy, not a CNS issue. The bad news is that the prognosis is more or less unknown, it could get better, worse or stay the same. They did a ton of blood work (8 vials!) an my results all look good, nothing out of the ordinary except low levels of vitamins, minerals and protein which fits with the malabsorption I’m dealing with. By all the blood tests I’ve done I appear fairly healthy actually. The only thing hounding me aside from SIBO is EBV which could by itself be causing the neuropathy.
Today I’m doing the prep diet for another round of testing tomorrow morning. I need to see where my bacteria levels are at to know if this is still SIBO and if so, where I’m at in killing these critters which it turns out are not all bacteria, some are archaea, or at least the methane producing M.Smithii is. Results will take a week or so and I’m staying on herbals at least that long. I plan on not stopping the treatment until my CH4 levels are down to 0 at baseline and don’t rise until the lactulose hits my colon. I’m expecting this to take at least a few more months based on the stories of others. We will mix up the herbs used so that the critters don’t become resistant to one of them Also plan on doing a comprehensive stool test to figure out exactly what my micro biome looks like and what I need to do to balance it out again. Dr. Bowen is wondering if maybe I’ve cleared the SIBO and am really dealing with Xifaxan/Neomycin malabsorption syndrome and that even the neuropathy is caused by that. I personally think I still have SIBO since I have been having die-off symptoms during the herbals but she could be right, the test results will tell.
I’m also trying to start dealing with the underlying motility issue that is probably at the root of my relapses, my MMC isn’t motoring too well. I don’t want to take a real pro-kinetic drug until I’m done with treatment but needed to do something. Ginger is the one thing that keeps coming up so now I’m doing ginger tea after meals to see if that helps. I am also adding 1T coconut oil and 1t ghee to my tea so that my ginger tea not only helps my motility but throws in an extra 150 calories per cup in hopes that can help turn the weight loss around. I need TriMag to shit most days but not much of it, another sign I still have methane in my system. i think ultimately I’ll be on Resolor or LDN or both to deal with the motility. I’m avoiding erythromycin even though it is the best pro-kinetic drug since anything with ‘mycin’ scares the hell out of me now. LDN could add to my already bad sleep, 10% find insomnia with it, but others say it helps their sleep so only trying it will let me know for sure.
What else is helping? Working some again is great, it gets my mind off my gut. I find I can only work about 4 hours a day and some days just need to do nothing but since my brain fog cleared up and my mind is working it is good to use it and it keeps me sitting on my ass not burning calories. Photography has been great, thanks to all the birds and critters that fly, swim or crawl into our backyard. The SIBO support group I’ve found online have been a huge help. I’ve met several people who have gotten rid of this stuff or are on their way to ridding themselves of it which is very encouraging. I’ve also met people in really bad shape and it puts my situation into perspective because aside from this I’m very blessed. I’ve also met one person whose sense of humor about the whole thing helps me laugh about this crazy situation, it is either that or cry at times. Catherine is giving me massage regularly now and that helps a TON with relaxation and motility. I’m also going to give in and try a bit more yoga since I need to do something non-aerobic to get back into shape and it can help with motility. My daily practice has literally saved my ass this year. If I wasn’t sitting and chanting every morning I don’t know where I’d be plus it puts this into perspective. To paraphrase the Heart Sutra – No SIBO and no extinction of it. Reggae music helps a lot, Jah Rastafari! Seriously, is there any more uplifting music in the world. Special thanks go out to Bob Marley, Burning Spear, Peter Tosh, Jimmy Cliff and my friends and the whole crew at Sick Donkey Records.
I have learned a LOT this past six months, more than I ever wanted to know about the digestive system, SIBO and autoimmune disorders. I honestly think I know more about SIBO now than any medical practitioner in the Seattle area unless there is one I haven’t found yet. I’ve watched the entire SIBO Symposium held at the SIBO Center in Portland this year, read many medical research papers and studies, read tons of blogs and books and pretty much have immersed myself in the subject. I’m sharing the information I have with my doctors in hopes that it will help not only me but the next patient they encounter with this crap. SIBO is under the radar so there is no SIBO Society to look for cures, there are just a handful of doctors from the allopathic, functional and naturopathic sides out there doing the research and at least they are talking to each other.
Onto the next six months of this crazy ride and remember – Relentless Forward Progress!