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After anti-SIBO protocol = belly problems, now what?

Messages
14
Location
Virginia, USA
1) I have been struggling with IBS-C and was on a low-FODMAP anti-inflammatory diet where my belly was mostly stable/predictable except was constantly constipated.

2) My integrative Dr. put me on a 1 month anti-SIBO protocol of natural antibiotics and an anti-fermentation diet.

3) Now that the protocol is over, I am having all sorts of unpredictable belly problems and don't know what to eat or take. Severe bloating, gas, constipation, diarrhea, etc. It's like I took a step back instead of forward! I took a probiotic yesterday and can't tell if it made things worse or had no impact. I have not touched natural pro-biotic (fermented) foods yet, like miso or kimchi.

What is a good follow-up step after coming off a natural SIBO protocol? I know I should repopulate with 'good' bacteria, but this is all confusing. Do I still have IBS? What the heck should my diet be now???

PS - after the last month of the protocol, I am SO tired of soups and stews and bone broths!

- Filia Lumen
pax tecum
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
I am so sorry @FiliaLumen that bad belly is still difficult for you. Have you thought of contacting your integrative doctor for some follow-up support, or advice? If he or she is able to help perhaps?
 
Messages
73
Location
Richmond, VA
I would see a gastroenterologist - I often get SIBO after going through a ME/CFS crash. They can do a pretty simple breath test to check for tell-tale symptoms of SIBO. There are certain antibiotics (rifaximin has worked for me and is approved for SIBO, but I have accidentally found azithromycin helps as well) that a gastro can prescribe that clears things up in 7-10 days depending on the type of bacteria. I usually combine one of those antibiotics with a low-FODMAP diet and things are back to normal for me within a week or two. I'm actually going through that routine right now, but I should be back to eating normal foods soon.

SIBO seems to be a clear pattern for immune/metabolic diseases - fibromyalgia patients often struggle with recurring bouts of SIBO, for example. There is some complex and poorly understood interplay between the human microbiome and the immune system that research is still catching up on.

The research isn't conclusive on natural/herbal antibiotics for SIBO, nor is the use of probiotics, which may actually worsen the condition depending on the strains. If you want to go down this rabbit hole even further, I would check out CFSRemission - which is a blog from a fellow ME/CFS sufferer who does a TON of research/experimentation on the gut. He actually runs a whole YouTube channel and microbiome research platform, which is pretty neat.
 
Messages
14
Location
Virginia, USA
Thank you, all.

I had a follow-up with the integrative Dr. and he sent me home with a 3-hr breath test kit to see whether or not I now have SIBO. I haven't done it yet, as the instructions have strict dietary/fasting prep during the 24hrs before the test. I feel my body is still recovering from the big dietary shifts I had to make in Dec/Jan for the anti-SIBO protocol, so I haven't done this breath test yet. Before the 30-day natural protocol, I had been on a low-FODMAP anti-inflammatory diet for 6 months, which at least made my IBS-C symptoms few and predictable : unpleasant, but I had a grasp of the cause-and-effect.

The natural anti-SIBO protocol plus anti-fermentation diet was a big change in the makeup and activity of my interior gastro system. It seems from this whole experience that any change in my internal environment causes stress on my body and it goes haywire. I would much rather my suffering be predictable! ;) (PEM is an example of a suffering that is predictable cause-and-effect).

The crazy pains, distention, etc. has calmed down over the last couple weeks, but my mind and body are left even more exhausted than before this little experiment. The gastro tract is, after all, like a 2nd brain of the central nervous system, so changes in its behavior will effect neuro-chemical levels.

Thank you for your support, ShephardK, I will check out the blog.

- Filia Lumen
pax tecum
 
Messages
14
Location
Virginia, USA
Hey, all!

1 - The SIBO breath test came back negative. . . .
2 - The belly pain and acute constipation/diarrhea has gone down to simple aches and mild constipation. I guess my body has adjusted to this new bacterial biome in my intestines.
3 - The nausea frequency has also gone down - though I did throwup a couple weeks ago for the first time since adolescence.
4 -- BUT: since I finished the natural anti-SIBO protocol, I returned to my previous diet, and since January I have gained 15 pounds -a veritable "beer belly." I am 36yo, and this is highly abnormal for me. Since I have gotten sick (about 3 years) and stopped my old athletic lifestyle, my muscle-weight has certainly dropped but I wasn't gaining fat-weight. Now I just quickly ballooned around the middle, and this has never happened either before or after getting my chronic illness.

It could be all these new supplements and prescriptions that I am being put on.
It could be the new functioning of my intestines has increased nutritional absorption.
It could be that 3 years of sedentary lifestyle has suddenly flipped a switch.

Any experience with this? And **how does one maintain a healthy weight when one has ME/CFS?** I can't even go for a gentle walk that is more than 5 minutes. Even gentle stretching is exhausting and I need to rest after. Any tips, insight, experience, or advice is encouraged.

(I brought this concern to my integrative doctor, and he replaced cyclobenzaprine with trazodone as the evening sleep drug.)

- FiliaLumen
pax tecum
 

Mary

Moderator Resource
Messages
17,287
Location
Southern California
@FiliaLumen - what was your previous diet like that you've gone back to?

What are the new supplements and prescriptions you're taking?

I've been sick for 22 years. The only way I've been able to keep from gaining weight is to watch every bite that goes into my mouth. I eat low carb (not keto), avoid sugar and white flour like the plague, and aim for 1200 calories a day. I don't eat anything after dinner and generally am done with dinner by 6:30 or so. Also, I've found that eating a light dinner is important. I'll have a couple of snacks in between meals, 1/2 an apple, some nuts, a piece of cheese with a cracker.

I can't go for walks either. My necessary activities of daily living use up all my energy. I don't have spare energy for "walks". I used to be very active physically before getting ill. I'd give anything to get toned! But at least I've managed to control my weight, although it takes daily vigilance!
 
Messages
14
Location
Virginia, USA
The diet that had been working with my ME/CFS (which is the one I have gone back too, after the 30-day anti-SIBO diet and medicine in Dec/Jan). It is low-FODMAP, anti-inflammatory. It is heavy in berries, greens, veggies, lean protein (fish, eggs, poultry), nuts/seeds, olive oil, and bone broth. It is very minimal in sweets, rice/corn/wheat, dairy, or red meat (4 legged). I eat three meals within 8am - 7pm. The meals are every 3-5 hours, with no snacking. I fast 7pm to 8am.

I used to make steel-cut oatmeal (yes to spices, no to sugars) for breakfast, but I haven't the energy to hang out at the stove. I haven't eaten oatmeal in months. . . maybe that's it?

I can't remember all my supplements because there are SO many, but I can remember the prescriptions as that is a shorter list. Right now I am on Rx Vit D, Fludrocortisone, Midodrine, Trazodone. I was on Cyclobenzaprine beginning Dec 2019, but was taken off that last week and put on Trazodone instead, after discussing the weight gain. (Though, I have now researched that cyclobenzaprine doesn't show weight gain as a side effect but trazodone does, so I don't quite understand that logic).
 
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Mary

Moderator Resource
Messages
17,287
Location
Southern California
Hi @FiliaLumen - first, a tip - if you're replying to someone's post, it's a good idea to tag them by putting the "@" sign in front of their user name, like I did with yours and like this: @Mary - that way the member will get an alert that you have responded to them.

Your diet sounds good to me. Fludrocortisone may cause you to retain water and can cause weight gain, and lose potassium. Are you monitoring your blood pressure and keeping an eye on your potassium? Common symptoms of low potassium include fatigue, muscle spasms, arrhythmia. I've had low potassium and it caused severe fatigue for me, as well as muscle spasms and cramps in my lower legs and feet.

About midodrine - one of the reviews on this site said it caused their waistline to go from 36 to 42 in 6 months but other than that it works fine: https://www.everydayhealth.com/drugs/midodrine/reviews

And trazodone has also been reported to cause weight gain.

I have not dealt with POTS so don't have any suggestions but it's possible other members here may have some ideas about other ways to deal with it. It may be possible that the combination of fluydrocortisone and midodrine may be too much.

It might be a good idea if you did a new thread about weight gain with these drugs - because the title of your thread only refers to SIBO and belly problems, and doesn't say anything about weight gain or these drugs, which seem like the most likely culprits to me (though of course I could be way off base here!)
 
Messages
14
Location
Virginia, USA
@Mary Thank you for reminding me that. This week has been a rough one and when I get the energy I will look into a thread about weight gain and supplements/drugs that cause it. If I don't find one I will begin one. Since beginning low-dose fludrocortisone, I have been mindful of my consumption of potassium-rich foods, such as avocadoes, sweet potatoes, and coconut water.

@ShepherdK Thank you for the resources. With my brain fog, the blog the link went to was too overwhelming for me. Small bites of info at a time! There is still definitely something screwy going on in my belly. There was no SIBO test before the protocol, only after the protocol, so there is no way to know if I ever had it. Have you found from your experience that changes in the intestinal microbiome results in a change in nutritional absorption - and therefore change in weight? That has happened after completing the anti-SIBO protocol.