Dearest Sjogren's Angels,
Just diagnosed with SIBO. Gastro team is calling in an antibiotic.
What is the usual course of treatment? I've read that antibiotics may need to be taken several times a year!
I have taken Omeprazole daily for years. Is that contributing to this problem by suppressing gastric acids?
What probiotic (if any) should I take? I'm reading up on this as best I can...it seems a bit hard to pin down. The latest thing I've been trying is Saccharomyces Boulardii which seems to be good for SIBO.
I have self diagnosed with IBS-D, and it looks like the two conditions often go together.
SIBO seems to be prevalent with those with Immune Deficiencies (I have CVID), as well..
And SIBO can cause malabsorption of substances like B12 and Iron, along with A, and D, and so on.
I've been anemic for about 11 years now, so that may be the result of undiagnosed/untreated SIBO?
You know, I so often don't feel well, that I really haven't been so bothered by the gas and bloating, but the diarrhea really got me down, which was when I adopted the food elimination plan for IBS-D, based on foods that contain FODMAPs. This food elimination plan has really helped me.
But back to SIBO. When I first heard of it here, ages ago, it sounded terrible, and now I have it. I really cannot believe I have yet another condition.
Does it ever stop?
Regards, Elaine
Oh Elaine, I am very sorry to hear that you have yet another challenge. I have never been diagnosed with SIBO, but over the years suspected that I might have it given symptoms that I experienced.
I will say that all changed when I added Evoxac and Immuran to me med list (in addition to Lanzoprazole daily, Vit D, B12, and now Gapabentin). Once I was on those two drugs my vitamin readings stabalized, in fact I've stopped taking B12 for now because mine was off the charts high -- hard to believe given a lifetime of low readings).
Wish I could offer advice, just try to persist, maybe this will prove to be an answer to more than one ill. Hugs.
Elaine, it is not fair that you have to deal with another diagnosis. I know, life is not fair.
I hope you will find out even more about it, and get the help you need.
Hugs,
susanep
im sorry for you poor carolina... (but i do not know what is SIBO)
SIBO = Small Intestine Bacterial Overgrowth
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3099351/
We are our own Medical Dictionary here.
Regards, Elaine
Hi Carolina, sorry about the SIBO !!!! But, the antibiotics should help. I honestly think any probiotic that survives the stomach acids and is enteric coated is good. If you can tolerate dairy products, a nice alternative that works well is kefir. It's very tart but it works as good as any probiotic.
I have been on nexium for years too. I have been taking the OTC dose. For some reason since I've been taking some new supplements and multi-vitamin it's been a lot better. I take Quercetin/bromelain and L glutathione and magnesium/ malate.
I think some of the meds that we take cause problems with our good bacteria.
Good luck with the stomach. At least the docs seem like they are on the right track.
I have had this several times and the thing that really helps me is Flagyl oral tablets. This is an antibiotic that kills off the anerobic bacteria or the bacteria that thrives with out the presence of oxygen.
Also the probiotics help and eating yogurt also works. The Greek yogurt works the best. I learned a long time ago to not get carried away with the yogurt as eating too much will cause me to have stomach issues and diarrhea. I think it pays to eat a couple days and then skip a day or too. I think that I would get an overgrowth of the bacteria that is in the yogurt. I would think that having an immune system that is screwed up would cause issues that would demand more attention in the treatment of this issue. Good luck. irish
Dear Irish and all who have so kindly responded:
I started on a combination of two antibiotics yesterday. The first antibiotic the doctor wanted to prescribe has a $493 co-pay, for a 14 day supply. So I had to refuse that one.
Now I am taking tephalexine and flagyl. I have so much to learn about this Bacterial Overgrowth condition. I guess it can be very damaging and may account for my anemia, and other problems with absorption of vitamins.
I realized that I have been taking Omeprazole, an acid suppressant for 20 years! That alone may be the cause of my SIBO, since lack of acid allows the bacteria to proliferate. I stopped taking it three days ago. So far, so good, but perhaps it takes a while to leave my system? I don't know.
Also my extensive neuropathy may cause bowel dysmotility (failure of my bowel to move the bacteria into my large intestine, where it belongs.
And it turns out that a diagnosis of CVID (my primary immune deficiency diagnosis) is one of the basic conditions associated with SIBO.
My Immune Deficiency is at the bottom of everything I experience, it seems.
I'm writing this at 5 am, because I waked up at 4 am and can't get back to sleep. No point in wondering why or in stressing myself just lying in bed wondering if I'll get back to sleep. I'm probably just anxious about the entire issue of SIBO and the antibiotics and my health in general.
I feel very disconnected these days......from family, from general activities (I do them, but without a sense of purpose). I wonder if this is a side effect of the LDN? I really feel a bit 'at sea' or lost.
Well, if this is the new normal, I guess I'll have to accept it, of course. What else can I do?
Hugs, Elaine
I have this on a regular basis due to my significant gastroparesis. The best antibiotic for this is Rifaximin...it only works in the GI tract (very little even gets into the blood stream), so side-effects are very low. However, the RX is very pricey and insurance doesn't always cover it. I get it overseas.
My GI doctor at Hopkins always uses Rifaxmin for this and I can tell you from experience that it works within just a couple days. However the course is 14 days.
I assume the first antibiotic he wanted to use was the Rifaximin...told you, pricey! But it really is best. Hopefully, you'll have good results with the two you are trying.
Actually, one of the most common causes of SIBO is gastroparesis, since the bacteria from the lower GI tract moves into the small intestine due to lack of proper GI movement/motility (gastroparesis). I also have CVID.
Anita, could you share (in a private message, perhaps) where, overseas, you obtain the antibiotic of choice?
My symptoms are gone, but the antibiotics are making me nauseated and generally 'icky'. However, I guess I should be used to feeling subpar all of the time!
I don't think I have gastro paresis, which, as I understand it, is failure of the stomach to empty? But perhaps that is over simplistic.
My understanding is that the problematic bacteria that should be in the Large Intestine, migrate to the Small Intestine due to failure of the LI to retain the bacteria, OR the movement of the Small Intestine is supposed to 'sweep the bacteria' in the the Large Intestine, and fails to do so, because of the poor movement (motility) of the Small Intestine.
I know I have other forms of dysmotility, probably related to the neuropathy of my Immune Disorder. So I think the dysmotility is more likely the problem, rather than gastro paresis. But I will read more about this.
On the whole I am really getting tired of this! I guess that doesn't matter, does it?
Thanks, Elaine
carolina do you mean you need rifaximin? in europe it costs very little, i should take it for diverticulosis and i always have it with me, its one of the few i can take bec im allergic to almost everything. i could send it to you if you like
i forgot to say that bimixin has the same effects than rifamixin and no side effects. also this one is cheap here
Thanks, blue gardenia.
Yes, it is rifaximin, which at first was denied, and then when it was approved by my prescription insurance cost $493, for 14 days. And that was not the total cost, just MY share.
That's why I chose the less expensive antibiotics. My condition isn't life threatening, so I thought I would at least see if the less expensive antibiotics would work.
This condition, SIBO, can be cleared up with an antibiotic but then come back. So I may have to take the breath test if I think SIBO has returned, and then I will have to take an antibiotic again.
I don't think there is any guarantee that one course of any antibiotic, including the best one, Rifaximin, will clear up SIBO completely.
At least I don't have a terrible problem with SIBO (and IBS-D, if I also have that), compared to most people. AND I have managed to control the action of the bacteria by controlling the food that I eat.
Some foods interact very strongly with the bacterial overgrowth (bacteria that should not be in my small intestine) leading to the very unpleasant symptoms.
And I guess my iron deficiency and other vitamin deficiencies may be tied to this problem.
I don't know. I'm rather tired of all of this. One thing too many! Even for me.
So thanks again for your offer, but I'm still taking the first round of antibiotics and taking this one day at a time!
Regards, Elaine
I sent you the information about Rifaximin, as you requested. You are correct in how SIBO takes place...but the basis is the dysmotility. If you have dysmotility in the intestines, then you likely may have it in the stomach as well. Have you ever been tested for gastroparesis (gastric empty test)?
Although the SIBO may come back, it's not due to the antibiotic...it's due to the underlining cause--the dysmotility. Rifaximin usually clears it up, but if you have significant dysmotility, then the same problem returns down the road. but it also may take more then one course. I have had to do a 14 day course, then 2 weeks later it came back and did another 2 week course...problem solved for months. But being I have severe gastroparesis and dysmotility, SIBO returns a couple times a year for me.
Keep in mind that ANY carbs and sugars FEED the SIBO, so while treating it, be sure to cut out these foods to help ensure complete clearing of the bacteria.
so strange that norfloxacin costs so much in the states, here its 8 euros for 12 pills, one of the less expensive antibiotics. think about it carolina may be we can find a way to send it to you. anyway the name is normix if u want to google it
Just a word of caution here, please, before attempting to send any medication personally, look into the legalities.
Dear Sjogren's Angels,
So, I have been taking the two antibiotics, and they have made me very miserable: nausea, headache, and over-all aches and pains. I cannot wait until I am through with the antibiotics, which will be on Sunday.
On the bright side (hard to see right now) my gastro-intestinal symptoms (gas and diarrhea) are gone.
So that means that SIBO is the essential cause of my problem, probably not IBS-D.
I wonder if this means that the foods that bothered me, will no longer bother me, if the SIBO is cleared up?
As you may recall, I implemented the FODMAP elimination diet, and found some relief from my symptoms, which appeared suddenly last year. I ended up with reactions to wheat and lactose, as well as many foods. Will I be able to eat those products again?
I was so miserable I was willing to give up anything to feel better. I guess I can do some testing later on. Right now I just want to feel better.
I see the Gastroenterologist again on April 17, and will discuss with her how I manage this SIBO diagnosis.
For me one of the hardest parts is the nausea. Somehow I find that so upsetting! Mostly, I guess, because I haven't had much nausea in my many years. Also, I am not used to things I can't make better by eating!
Hugs, Elaine