After my meeting in Portland with Dr. Siebecker on Feb 6th I was pretty confident that I was going to be able to kick this thing in short order. We had arrived in Portland on the 5th and I found out that my breath test came back positive for SIBO and that it was all methane producing bacteria that were present but a low level of them. The treatment protocol that Dr. Siebecker, Puget Sound Gastro and Dr. Pimental from Cedar-Sinai all agreed upon was 10-14 days of a mix of 1650mg Xifaxan and 1000mg of Neomycin. The dual combo was needed to fight the methane producing bugs.
I was in Portland for days so couldn’t pick up the Rx until the 10th when we got back home. Until then I continued on the SCD diet and actually started feeling much better during our stay in Portland. In fact, I was walking 5-6 miles a day in the snow and working out at the fitness center at the gym. I got regular for the first time in over a month. I actually gained weight and was up to 158 by the time we got home.
Then I picked up the Rx. I read the side effect sheet and was pretty terrified of the drugs. I called both PSG and Dr. Siebecker for some re-assurance that these drugs were not going to make things worse and was told that the really bad side effects (hearing loss, nerve damage, kidney failure) would not happen with the low doses of the drugs over a short period of time and that, as Dr. Pimental states in his book – side effects were minimal since the drugs stayed in the intestinal tract. After hearing this from all sources I decided to give it a try, hoping to knock the bad bugs in the next few weeks.
Well, the side effects were not minimal to say the least. By Wednesday night I was a mess and back on the phone with both PSG and Dr. Siebecker. I suddenly had tinnitus in my left ear, one of the precursors to potential hearing loss from the Neomycin. I felt like total crap all over and was nauseous with a horrible case of “brain fog”, pressure in my ears and no energy at all. I was assured that this was probably die-off symptoms and that to continue and it would be better in a day or so. Dr. Siebecker even said she had the same symptoms in the ears with herbal antibiotics and again with Neomycin but there was no permanent damage and PSG said a lot of people feel worse with the treatment than before they started. Duh, why didn’t they say this to start with instead of the “minimal side effect” line. The next day the ringing in my ear was worse as was the pressure and my head still felt horrible. I called again and this time was told to stop the Neomycin after only 2.5 days worth, a whopping 2.5 gr of the stuff may have permanently damaged my ears. The usual dose for this stuff is 2-12 gr a day so I basically took one dose over the course of a few days, I can’t imagine what 12 gr a day would do to someone.
The next day the tinnitus was just as bad as was my gut and general feeling of being totally out of it. I had managed to lose all my hard earned weight gain and was back to 155. I went to see my more naturopath oriented doctor to go over some other test results. There I found out that I am now gluten intolerant as well as dairy intolerant (well casein not lactose) which explains a lot. Guess it is Paleo for me from here on out, at least my lifestyle was somewhat Paleo with a lot of time outdoors, barefoot running, etc.. now I can add the diet. I also evidently picked up some nasty little amoeba in Central America on one of my many journeys there and it has probably been reeking havoc in my gut for who knows how long, potentially causing leaky gut which could explain how the “safe” drugs escaped my gut and began messing up my entire body. I decided then and there to stop taking the Xifaxan too and let the other doctors know about it.
It has been a few days since I stopped all the meds. My ears still ring and fill with fluid at night but actually clear up some during the day so I’m hoping this isn’t going to keep progressing and getting worse and may actually clear up somewhat. I have felt like crap much of the time but yesterday afternoon actually felt almost human and managed to do a lot of work around the house. This morning at my weigh in I noticed I was actually up 1.5 lbs from the Saturday morning so that seems like a good sign.
I guess I fight SIBO with diet at this point sticking to Paleo/SCD. Maybe if I stabilize I’ll give herbal antibiotics a try and see if they can knock the bugs w/o needing real drugs. I’ll also need to deal with the amoeba once I’m stable though the treatment for that won’t last too long. I’m definitely afraid to take another antibiotic fro the rest of my life at this point.