[Hester]

Hello, everyone! As many of you know I was very, very ill having lost 35% of my body weight and unable to leave the house. (10-15 attacks of uncontrolled diarrhea daily.) I tried EVERYTHING!!! This long list included thousands of dollars on herbals, different probotics, the calcium supplements, various Rx medications. I just kept getting worse. All of my hair fell out and my head was constantly foggy along with a complete lack of muscle tone/strength. Night sweats were intense. Yet, test after test came back with nothing. (I never did go through the breath test as my GI doctor said it was not that accurate.) I was finally placed on Tetracycline 2000 mg a day and found relief for more than 7 months. My weight is back up. When I back off the Tetracycline, I get rumblings and gas back along with loose stools. Hence, I kind of know when to start taking them again. My doctor has given me a running Rx. I realize this may not be great for my body but it has given me some resemblance of life back. I now have hope to be able to work again. Will it work forever? I do not know. I do know when I added probotics to the antibiotic, the diarrhea returned. I should mention they used antidepressants to slow down my gut. The SSRI class made me worse while the anti-psychotic class worked wonders for the weight gain and diarrhea. Sadly, I mentally could not tolerate the drugs and have since gained more weight than I am comfortable with (10 lbs a week and up from 125 to 160). It is not fun going off these products- withdrawal is a b*tch. So, right now, I have my fingers crossed that I can rely on the Tetracycline alone to control my diarrhea. I am happy to answer questions to the best of my ability as I too have done a great deal of research and reading. Most SIBO sufferers get it from an initial infection, an obstruction, a blind loop, or loss of normal motility (way too fast or too slow). I lost my "housekeeper" wave due to nerve damage. So, I will most likely battle this condition for the rest of my life. Tetracycline worked so far for me. I chose it over Cipro, Avelox and Doxy simply because it is easier for me to tolerate. I chose it over Xifaxin because (according to a JAMA article) the overgrowth spreads to other organs of the body. This is why we so often feel foggy, sweaty, heart pounding, muscles wasting, smell bad. . . I will check in now and then. If the tetracycline fails, I have no idea where I'll go from there.

 

[faze action]

I have a question:How were you diagnosed with nerve damage? Is it your vagus nerve?

 

[Hester]

It is a rather speculative diagnosis based on an Intestinal Transit Time Test of less than 15 minutes. (You drink a dye and a CT scanner takes pictures every five minutes.) I can actually feel my transit time speed up when the bacteria are back. I pop a couple of Tetracycline and it all slows back down, quiets down and the bowel movements return to normal. However, my doctors were also using the anti-psychotic Zyprexa with its constipating side-effect to slow down my digestion and increase my appetite. I am trying to stop taking it due to a lack of energy and sleepiness as well as way, way too much weight gain. I guess we will see what happens. At the very least, I will be back on both products and lazy and fat.

 

[Moises]

How much and how many times/day is your tetracycline dose?

 

[Hester]

I take 500 mg 4 times daily when I am in a really bad flare or can feel it coming. For me, this means a feeling of extreme bloating, gas, bubbling stomach/intestines, my eyes feel like sand and my tongue and throat are coated and dry. Quite frankly, I was so bad that within 4 hours of my first dose of Tetracycline my "brain fog" cleared and my strength started to return. I will skip three or four days but feel the gas start to come back and will take it again. My GI and IM both agree this could be forever. It has now been about 5 months solid. My hope is after a year to back off and see what happens. This is in line with the clinical thought that 6 months of antibiotic therapy is required to kill whatever bad bacteria has overtaken the SB. When on the 2000 mg a day for 2 months, I developed a bad headache and backed off. Since that time my dose varies from 0 mg to 1000 per day depending on how I feel. Realistically this might at some point cause resistance but I have my life back. Before this, I could not leave me house. I no longer alter my diet. However, this last month I am trying more and more raw fruits and veges using a BendTek/smoothie maker. This has resulted in an increase in gas but I have more energy. So I guess it is a trade off.

 

[Moises]

Hester,That's great that you could find an antibiotic that gives you relief. I wonder if the xifaxan would have worked for you.

 

[Hester]

Well, six months of bliss appear to be coming to an end as some of my symptoms have returned (bloating, gas, some diarrhea/urgency, grumbling, pain in the GI). This is inspite of taking the Tetracycline. I am back up to 2000 mg a day but it appears to be failing. I am not going back on the Zyprexa even though it did slow down my gut. The side effects and lack of mental clarity/energy are unacceptable. I am going to try Xifaxan (hopefully) along with peppermint caps. It is funny this happened after a bought of stress and acid reflux. I had to take my PPi again for about two weeks. There seems to be some evidence that PPi useage can make SIBO worse as stomach acid is key to sweeping the small bowel clean. The PPi's prevent this from happening. It is a set back and I am depressed over this bowel issue wishing so very much for a "normal" life that does not revolve around the bathroom and embarassment. . .

 

[faze action]

I hope the Xifaxin works for you... I've taken it twice so far and it's helped me, but the bacteria keep returning. I do not take PPIs, but I did have a bout of severe stress a few years ago that seem to trigger all of this for me. Never had a physical reaction to stress before in my life and now this.If you are ever able to figure out the cause of your recurring SIBO, then please post it because I'd love to know. I wish I knew what is causing mine since all the "usual suspects" do not apply to me.