Hope

[sloopercat]

My girlfriend has ME/CFS. Her GI symptoms were getting intolerable. She was a belching and flatulence machine. It was causing her to be unable to rest. Sitting and laying flat made it worse. She has seen GI docs who prescribed PPI medication. She has also been taking gas, antacids and pepto. I was getting concerned about her rapidly declining health. She is scheduled for an endoscopic and colonoscopy. Pleas to the GI doc to move this procedure up in the scheduling was not possible. Even telling them that we would probably be in the emergency room beforehand was not working, and that was what I thought would be the case as she was really going downhill fast. What I am realizing is that they are basically clueless as to what to do. Still getting the exams, as she is due for a colon cancer screening, but I doubt they will find any actionable diagnosis.

In desperation I searched for a doc/clinic specializing in gut microbiome. Considering how important that is to health, I was surprised how few there are. Found one that was In Nashville, two hours away. Frankly I was skeptical, but desperate enough to give it a try. What a refreshing change, he actually listened and had a plan of attack. He took blood samples to send out for food sensitivities. Sent us home with a stool test kit for microbiome testing. Also gave recommendations on what to eat and not eat while waiting for test results, which we do not have at this time. He also gave her two supplements to take to help reduce inflammation of the gut. After 3-4 days her constant gas machine has started to turn itself off. She can actually get some quality sleep.

I am hopeful that we can get her disabling GI symptoms under control and possibly heal her gut biome to achieve wider symptomatic relief and possibly work towards a cure by fixing the micro biome. Her CF doc is supporting this and talked about research being done with antibiotics to help restore balance of the micro biome as well,. A lot of that research is being done on post Covid patients.

It’s only one spoke in the wheel, but I believe that no one can make progress with a messed up microbiome and certainly nobody can without the ability to get restorative rest.

 

[appa]

I have really bad GI symptoms as well though different ones. I am going to a nutritional counselor who so far I don't know how much she has helped me but dietician is one type of of medical help person who sometimes can help with gut biom that you might want to consider. my issue is I have not had the energy to make the type of food my nutritional counsler is recomending which is lots of purees so that my body doesn't need to use as much energy to digest things right now but also my symptoms are different.

 

[sloopercat]

She has seen improvement by taking the supplements and now has the list of foods she can tolerate. The list of foods that seem to not aggravate has been developed through trial and error and that short list is all she has been eating. The constant belching and interrupted rest has stopped. Still awaiting the stool test, but my guess is it’s the standard imbalance seen in long Covid.

 

[livinglighter]

I recently got results back from stool testing and have been diagnosed with SIBO which causes IBS symptoms. I should be getting some antibiotics and a list of foods I can eat soon. The doctor said improving the gut will have a direct effect on the immune system which is in a hyper state.

You are doing a great job at helping your girlfriend. I recall the rapid decline at the beginning and it is frightening. At some point, it may stabilise a bit. Addressing everything early on as you're doing should help significant deterioration.

 

[sloopercat]

Western medicine strikes again. She had an endoscopic evaluation with biopsies and a colonoscopy. Nothing showed up as bad, and that’s good news. Another specialist dropping the ball when their tests are not able to show why she is having GI distress. Best they can offer is more PPIs, which she is trying to wean off. PPIs just make you dependent on them, it’s not a solution. Amazing to me that a GI specialist has no clue as to what to do. We have seen that with every specialist she has seen, they have a very narrow focus and anything outside that focus is no longer their problem.

 

[Judee]

Yeah, my upper GI and colonoscopy didn't really show anything but inflammation but the gastroenterologist gave me a diagnosis of IBS which I believe was accurate.

Lots of ME/CFS people end up with IBS at some point in our journey.

I had to figure out what to use myself because their meds didn't take away the pain at all and just made me sleepy/drugged feeling.

Not that it's going to work for your gal but Mycopryl ended up being the best thing for me and caused the IBS pain to stop within a very short time. I sometimes still had to add Peppogest though if I was in a bad flair but haven't had to use the Peppogest for a long time now.

And of course, like you've found doing avoidance for foods that trigger it is necessary as well.

For me seeds and cow's milk dairy are the worst. Even just one blackberry is torture for me...all those tiny little seeds must act like sandpaper on my insides.

With a bout of gastritis last summer I found I could do natural ferment sauerkraut again even though cfsremission.com says it's not really good for people with ME. (His site also has a lot on ME and IBS together.)

Hope you both can figure out what will work for her.

 

[sloopercat]

Well, that was interesting. Just got off a Telemed call with her doctor. This was to discuss her fecal test results. Her Candida levels were very high (two orders on magnitud), so attacking that with herbals for now. Interesting that this doc almost paraphrased what Dr. Teitlebaum said in a video I listened to, herbal first slowly then prescribe if needed Diflucan as a final blow.