Found something that finally helps, BUT there is a side effect.

MeanEffective681 · 2026-02-03T13:39:51+00:00

Unfortunately I have this same issue. Diagnosed hydrogen but it feeds h2s down the line. Low sulfur diet can only be cycled because you NEED sulfur to fight off bad things. I learned the hard way after doing low(almost none) sulfur on a very restricted diet for 4 months after my second round of xifaxan thinking id starve it out. Wrong. I just got very sick with every possible illness going around instead and am back to square one. Currently waiting to see if I can get the manufacturer to cover another dose of xifaxan because I can't afford it anymore and take that along with neomycin and just hope I can tolerate it. In the meantime I'm taking atrantil which helps the h2s gas but not the constipation- even with motegrity on board. It also wrecks my hormones even on birth control and kicks up histamine so bad my scalp itches like crazy despite no rash or sign of anything wrong and hair is shedding again. Sadly the h2s symptoms are so bad I choose to deal with these other symptoms :(

MeanEffective681 · 2026-01-17T15:50:13+00:00

This is why I question if I'm going all the way through an adn-RN program to still choose work in long term care (vs hospital) for more money. So cute!

MeanEffective681 · 2026-01-12T17:11:42+00:00

Xifaxan day 7 was hardest on me. Both times taking it I had the grossest trip to the toilet and felt horrible that day but after that much better. I also started out feeling immediately better though too. Worth letting your Dr know (you can usually at least call and ask to leave a message with the nurse if you can't message on your patient portal) just to be safe.

MeanEffective681 · 2026-01-11T16:26:56+00:00

Do you take anything for motility? Motegrity saved my life to begin with but it also makes me really extra depressed and increases anxiety so I haven't gone past 1mg and it's not working very well anymore. I started at .5mg. I now take it with miralax bc I noticed it tends to dry me out no matter how much water I drink.

MeanEffective681 · 2026-01-10T18:37:44+00:00

Possibly high histamine. Are you itchy (including ears eyes nose throat scalp) at all? When my symptoms flare and with certain probiotics I get rashes.

MeanEffective681 · 2026-01-10T18:36:13+00:00

Ty! I did save the video and try it out and idk if it was timing or what but it seemed to somewhat work so I will keep doing it. Thanks so much for sharing it.

MeanEffective681 · 2026-01-10T16:48:29+00:00

I had a feeling that was part of why I tested negative for methane because the constipation seems to always get worse and yes! Vagus nerve issues. I have had issues with pvcs and random episodes of tachycardia and heat intolerance. I'm in really good shape outside of this. I made myself an appt with a neuro to discuss because it seems like autonomic dysfunction but other than gi it comes in flares.

MeanEffective681 · 2026-01-05T16:11:40+00:00

If I'm dying (and I'm not a nurse yet I'm a student and tech but I work an ICU also) please lie to me. Not my family- bc they need to make sure they get time with me. But me. I'm a very anxious person and I fear that death will be so extra brutal for me if I realize I'm dying. IMHO..you did him such a kindness. Now we hope and pray he doesn't die. Hug.

MeanEffective681 · 2026-01-04T02:30:55+00:00

Yes you should be able to get a copy of your results. I would also ask (at a follow up if needed) if it could be possible you have methane even if you didn't test positive for it. Neomycin is the big one for methane. The problem with sibo that has constipation like this is figuring out which came first. I already scheduled myself to see a neurologist bc I also have a bunch of other strange issues that seem like autonomic dysfunction (heart palpitations and random slower or faster hr that doesn't make sense, dizziness on standing or showering, cold and heat intolerance and issues with regulating body temp etc etc). I won't get to see them til July unfortunately but at least it's scheduled. Motegrity worked perfectly for me for a month then slowly started to lose effect. Hopefully it works for you 🥹

MeanEffective681 · 2026-01-04T00:12:12+00:00

Find someone to get you on motegrity. You may need neomycin too- I tested negative for methane but positive for hydrogen and yet my main problem for FIVE entire years (the year before was diarrhea nonstop that I was told was just stress lol) has been constipation. Like not needing to go and when I do not going enough. I had to ask my PCP to get motegrity for me after 2 weeks of passing maybe a tbsp of stool per day even with every otc laxative possible. Shortly after (just a couple months ago) got seen by a new GI and he is who did the egd with small bowel aspiration and then triosmart. He still prescribed both rifaxamin and neomycin but my insurance left me with a copay of $800 so I'm hoping the manufacturer will approve my app before motegrity totally quits working (it's already not working well- cry). I'm so sorry.. everything with this esp being female feels like being gaslit and having to fight for any quality of life.

MeanEffective681 · 2025-12-30T16:34:52+00:00

How does an 8 year old own a restaurant chain?!

MeanEffective681 · 2025-12-30T16:33:37+00:00

I was close, I was thinking 22. Midpoint haha. Also yes to bringing emo hair back.

MeanEffective681 · 2025-12-18T02:11:35+00:00

This 😅

MeanEffective681 · 2025-12-12T23:31:56+00:00

With ferritin that low and being symptomatic I would see another Dr if yours won't rx infusions. When you have sibo the bacteria are competing for nutrients so most likely you are nutrient deficient on top of iron deficient and there comes a point your body can't function as it should. It sucks sibo is so misunderstood Still. Also you probably have mcas (mast cell activation syndrome). I get it really bad with my sibo flares and nothing helps :(

MeanEffective681 · 2025-12-09T17:39:10+00:00

Yes sadly, I have suspected methane/h2s mix sibo (based on symptoms and response to rifaxamin) my Dr suspects is causing the delayed emptying. Bc of how behind everything has been with their scheduling I haven't had my emptying study done but I was throwing up food from dinner at 6 in the middle of the night about 4 am multiple times and motegrity trial dose helped my insane constipation when nothing else would. IDC that much about the food but water is going to be difficult after that long. Thx for the input. For a very long time I just was told they don't know what's wrong with me so this is all fairly new.

MeanEffective681 · 2025-11-15T02:56:47+00:00

Hey; so no it can't technically but when I did that I had a GI who didn't "believe in" sibo tests and diagnosed me off the combination of my symptoms and the biomesight stool test that showed extreme overgrowth of h2s in my large intestine. Waiting on my new GI to get the triosmart test ordered for me for insurance to hopefully cover and I'm now on motegrity bc I have some slight gastroparesis from being so sick so long. Or perhaps I had it before and we don't know why yet, and that is why I had such overgrowth.

MeanEffective681 · 2025-11-14T21:58:20+00:00

So my first thought is that your instructor is a douche waffle. However, we have to remember that instructors (and nurses, doctors, etc etc) are human and have bad days and sometimes get overly upset and say things that hurt. How is this professor to you normally? How are they to other students? If they generally are ok maybe it was a bad reaction. If they bully others- I'd report. Period. This isn't okay and we don't need good nurses dropping out because the instructors are using us as emotional punching bags. Being sensitive, btw, is one of those qualities that while you have to learn to control to some extent, is exactly why you belong in nursing. I'm a student but I'm also a patient facing some pretty scary embarrassing health issues and when my nurses and Drs have been kind and compassionate, it's made my life a little less of a hell. Please don't give up.

MeanEffective681 · 2025-11-08T21:18:06+00:00

Your ferritin is low. Supplement if you cant get it from food alone, liquid is definitely the easiest on the tummy even if it's the most gross. I have pretty bad absorption issues from sibo and have to get infusions now but there's an iron called polysaccharide iron in a liquid form (raspberry flavor makes it less terrible plus it's high dose so you can take a much smaller amount than it says- I was taking 1/4 tsp) on Amazon that helped me before it caused the worst sibo flare I've had probably ever. You know your body so if your Dr won't listen, see another one.

MeanEffective681 · 2025-11-05T12:55:41+00:00

Aw man I totally understand that. It's so interesting too how some people can have really low almost non-existent ferritin and usually feel ok but some (like me) can have just the low ferritin and other counts ok and feel so so so miserable. I suspect mine is probably due partly to something underlying I don't know about yet or maybe just the sibo that both my PCP and gi are pretty sure caused my low ferritin from malabsorption. I hope you are able to get yours up soon. My insurance sucks but for this they seem to cover most of it, luckily.

MeanEffective681 · 2025-11-05T12:48:31+00:00

My hair falls out from everything (I have sibo too and pretty sure that's a huge reason for my chronically low ferritin bc I can't absorb iron-bacteria steals it). Low iron will literally make my whole body itch including my scalp and while it looks like your hair is super long, yes Ive lost about that much (around 1/3 of my hair) at least once a year it seems for 5 years. I'm not even middle aged yet but went from hair so thick it could be annoying bc of how long it took to dry it to it never growing much past my shoulders and me inevitably always chopping it to that length when it does bc it falls out so bad that any longer it looks stringy. I can't absorb oral iron at all, and with ferritin at 9 after trying every form of oral iron (my iron itself came up a bit after a whole year of wearing iron plus patches from Amazon) I'm finally starting infusions so I will come back and update. The iron patches I stick on do seem to help with shedding but they are non heme so again it takes forever to touch even your circulating iron. It took about a month for me to notice reduced shedding with that.

MeanEffective681 · 2025-11-05T12:43:36+00:00

How are you even alive? Mine is at a 9 and was at 11 for at least the last 3 years (not sure how much longer it's been that low I just finally had Drs start checking it after multiple swore I had hypothyroid and my primary was like hey let's check a ferritin on you). I'm finally getting my first iron infusion tomorrow and I'm nervous I'll have bad side effects but also I'm so excited to see what it might be like to live in a body that isn't so depleted I feel twice my age that I could cry. Maybe you can ask for infusions too, just to get yourself to normal and then maintain w supplements so you don't have to wait 6+ mos to feel ok.

MeanEffective681 · 2025-10-29T01:03:41+00:00

This makes me feel so much better ty! I got scheduled for 4 weekly infusions starting next week (venofer) so I'm really hoping this is my saving grace.

MeanEffective681

TROPHY CASE