Help wanted (Score so far related)

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Jersey Girl
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Re: Help wanted (Score so far related)

Post by Jersey Girl »

Jersey Girl wrote:
Sat Nov 22, 2025 12:41 am
Jersey Girl wrote:
Sat Nov 15, 2025 3:31 am
Xifaxan

Start Date: Saturday, November 15, 2025

(I'm going to use this one post to record any and all side effects so it's going to change with edits over the next 14 days. If I end up getting stupid on account of brain fog I'll still do my best to record symptoms if I can. Watch this post for future displays of public embarrassment. :oops: )

Oh yeah like I started it when I said I would. Drag my feet, who me? :roll:

November 20, 2025

1 hour after the first dose


Couple of mild abdominal pinchy pains both sides of tummy. Came and went.

2.5 hours after the first dose.


Sleepy already. Nodding off while watching youtube videos. :shock:

Gut making all sorts of noises. Probably the bad bacteria: She did it again! Help! She's onto us! Run! Run! Run for your life! :lol:

7 hours after the first dose

Itchy rash both sides of neck. :shock: Stop it. Stop it. Stop it.
November 25,2025

The only side effect I think I have is a mild pain in my head from time to time and a little zap behind my eyes. Also from time to time.

Random things I thought were side effects but have other possible explanations:

Pinching both sides of tummy. (Gone after the first day)
Sleepiness (Don't think it was the med)
Itchy rash both sides of neck. (I think it's a common rash I get this time of year--still have it.)

Improvement:
I was already much better than I have been in 2.5 years when I started the RX. Sleeping better? Symptoms are about the same depending on what I eat.

Random again: I had pain in every single joint in my toes on both feet. It's gone. No one knows why.

ETA: Oops. I meant to just update the post not quote it. Did I mention I sprained my ankle? :shock: Did the RICE protocol. It's much better now.
LIGHT HAS A NAME

We only get stronger when we are lifting something that is heavier than what we are used to. ~ KF

Slava Ukraini!
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IWMP
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Re: Help wanted (Score so far related)

Post by IWMP »

Jersey Girl wrote:
Wed Nov 26, 2025 6:53 am
Jersey Girl wrote:
Sat Nov 22, 2025 12:41 am
Oh yeah like I started it when I said I would. Drag my feet, who me? :roll:

November 20, 2025

1 hour after the first dose


Couple of mild abdominal pinchy pains both sides of tummy. Came and went.

2.5 hours after the first dose.


Sleepy already. Nodding off while watching youtube videos. :shock:

Gut making all sorts of noises. Probably the bad bacteria: She did it again! Help! She's onto us! Run! Run! Run for your life! :lol:

7 hours after the first dose

Itchy rash both sides of neck. :shock: Stop it. Stop it. Stop it.
November 25,2025

The only side effect I think I have is a mild pain in my head from time to time and a little zap behind my eyes. Also from time to time.

Random things I thought were side effects but have other possible explanations:

Pinching both sides of tummy. (Gone after the first day)
Sleepiness (Don't think it was the med)
Itchy rash both sides of neck. (I think it's a common rash I get this time of year--still have it.)

Improvement:
I was already much better than I have been in 2.5 years when I started the RX. Sleeping better? Symptoms are about the same depending on what I eat.

Random again: I had pain in every single joint in my toes on both feet. It's gone. No one knows why.

ETA: Oops. I meant to just update the post not quote it. Did I mention I sprained my ankle? :shock: Did the RICE protocol. It's much better now.
Aww. I'm glad the antibiotics are helping :D Ouch.
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Jersey Girl
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Re: Help wanted (Score so far related)

Post by Jersey Girl »

IWMP wrote:
Wed Nov 26, 2025 9:04 am
Aww. I'm glad the antibiotics are helping :D Ouch.
Ouch for real, friend! Ankle is healing at least. Cold weather isn't helping with that. :shock:
LIGHT HAS A NAME

We only get stronger when we are lifting something that is heavier than what we are used to. ~ KF

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Jersey Girl
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Re: Help wanted (Score so far related)

Post by Jersey Girl »

Xifaxan Treatment

Half way through.

Side effects: Shooting pains in my head (different areas) and behind my eyes are still a feature. The pain isn't continuous. It happens intermittently throughout the day. Some nausea might be attributed to the medication. Gut is talking up a storm. Hopefully that's the good guys moving stealthily around picking off the bad guys.

That's is all I have to say.
LIGHT HAS A NAME

We only get stronger when we are lifting something that is heavier than what we are used to. ~ KF

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Re: Help wanted (Score so far related)

Post by Jersey Girl »

About 10 days in. Started Nov 20 with 1 dose so that has to be accounted for. Treatment is 14 full days.

Have had far less symptoms with this round than the other 3 I did last year.

No brain fog.
Didn't set anything on fire.

Xifaxan is NOT a walk in the park.
The random shooting pains in my head and behind one eye or the other are wearing me down.
Tylenol doesn't touch it.

Mental Health:

Mood swings.

This isn't really new. It's been part of the package for the past several months if not the whole entire time. They shift fast. I can go from optimistic to weepy and back to optimistic in a short time span and just continue on my merry way. Try 15 minutes. :shock: Maybe it's the gut/brain connection.
LIGHT HAS A NAME

We only get stronger when we are lifting something that is heavier than what we are used to. ~ KF

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Jersey Girl
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Re: Help wanted (Score so far related)

Post by Jersey Girl »

Little update:

Finished Xifaxan treatment.
Side effects (shooting pains in my head and my eyes) stopped two days after the last dose.

Appt with the Gastro NP (who was giving up her lunch break for it) didn't happen. One scheduler apparently didn't send to the second so it didn't appear on the schedule. Tentatively rescheduled pending confirmation. She leaves the practice this month.
LIGHT HAS A NAME

We only get stronger when we are lifting something that is heavier than what we are used to. ~ KF

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Jersey Girl
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Re: Help wanted (Score so far related)

Post by Jersey Girl »

December 23, 2025

For the journal...to mark this day.

Seph Schlueter - Counting My Blessings (the unofficial music video)
https://www.youtube.com/watch?v=Er5XPKdpqHQ

Lyrics:
It’s like it was yesterday
I was a praying for a miracle
Scared to have a little hope
And now looking back today
Seeing all the things You’ve done
I can’t even add them up

One, two, three
Up to infinity 
I’d run out of numbers
Before I could thank You for everything

God I’m still counting my blessings
All that You’ve done in my life
The more that I look in the details
The more of Your goodness I find
Father on this side of heaven
I know that I’ll run out of time
But I will keep counting my blessings
Knowing I can’t count that high

And I know that seasons
Never last forever
So, God I will remember
All of the reasons
My heart has to be grateful
All the times you have been faithful to me

God I’m still counting my blessings
All that You’ve done in my life
The more that I look in the details
The more of Your goodness I find
Father on this side of heaven
I know that I’ll run out of time
But I will keep counting my blessings
Knowing I can’t count that high

Oh, I can’t count that high
High
Oh oh oh oh
Oh oh oh
High
Oh, Your goodness, Your goodness

One, two, three
Up to infinity 
I’d run out of numbers
Before I could thank You for everything

God I’m still counting my blessings
All that You’ve done in my life (Oh oh oh
The more that I look in the details (In the details)
The more of Your goodness I find (Oh oh oh)
Father on this side of heaven
I know that I’ll run out of time (Oh oh oh)
But I will keep counting my blessings
Knowing I can’t count that high
I will keep counting my blessings
Knowing I can’t count that high
LIGHT HAS A NAME

We only get stronger when we are lifting something that is heavier than what we are used to. ~ KF

Slava Ukraini!
msnobody
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Re: Help wanted (Score so far related)

Post by msnobody »

Jersey, what are you able to eat without, or with little problems?

Darling daughter just texted me that she thinks she’s going to have to eat plain chicken and rice for the rest of her life. Everything else hurts.
"Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them." Psalm 139:16 ESV
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Jersey Girl
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Re: Help wanted (Score so far related)

Post by Jersey Girl »

msnobody wrote:
Sat Jan 03, 2026 3:11 am
Jersey, what are you able to eat without, or with little problems?
NOTHING. And even nothing hurts because when your stomach is empty, it produces acid. I'll talk to her directly. Do with this what you will. :)

Dear Girl that I don't even know,

When you say you'll have to eat chicken and rice for the rest of your life because everything hurts, I believe you. I've eaten grilled boneless chicken breast with nothing on it for over 2.5 years now. I've combined it with a steamed veg or a fruit, grated parmesan, and various crackers. One day it works, the next day it doesn't. Sound familiar?

You may have SIBO or IBS. Doctors can't distinguish between the two. The test results for SIBO using glucose solution are questionable. Any paperwork your doctor files for antibiotics treatment preapproval will say you have IBS-C (constipation) or IBS-D (diarrhea). When they want the preapproval to pass, they'll say you have IBS-D. Patients using Xifaxan notice some result 2 weeks or so later. I've done 4 rounds all total.

Don't think about your weight loss, ignore it. Concentrate on healing your gut. UP the protein intake as high as you can manage starting with your chicken. Eat it 3 meals a day if you have to. Cook chicken in batches and put some in the freezer in ziplocs so it's always ready for you. When your gut lining is inflamed, even water hurts, I know.

Your foundation is chicken and rice. You can try to build from there.

Find food lists of low sugar fruits and vegs, also high fiber of each. Read carefully. Start with 1 tsp a day. Try it again the next day. Put it in, take it out as needed. What doesn't work today may work 6 months from now if your gut is less inflamed.

I know how much you hate the experiment.

If you are able to eat white rice, up your game. Go to brown rice and quinoa both of which have higher nutritional value. As with everything, start small. Don't worry about wasting food. You're simply testing food. Test 1 new food each week unless you need a break.

If you can't get enough fiber, try a fiber supplement. Citrucel tablets which are a kind of synthetic fiber supplement. Unlike psyllium husk, Citrucel (Methylcellulouse) will NOT trigger you. Start very small. See how it goes.

Drink lots of water and try to keep your electrolytes in check. Pedialyte packets for children.

Be brave. I know you are sick and tired of it. Cast your cares on Him, gather your strength, and gear up for a marathon. When you feel your hope fading, go to the Throne. You can do this but remember to be kind to yourself and give yourself grace.

Food Bible: https://www.fodmapeveryday.com/

Current Supplements: Citrucel, Stool softener gel caps, Simethicone, and FDgard (used to be daily, now only occasionally)
Current Meds I take for gut: Pepcid 2 x's per day
(Don't take FD Gard and Pepcid at the same time or close together.)


Current Foods:

Breakfast:

Plain Oatmeal (1.5 microwave packets)
Blueberries or strawberries.
Cinnamon
Pure Maple Syrup
Milk (new addition)


Directions:

1. Put the 1.5 packets of oatmeal in the bowl. Save the other 1/2 for tomorrow. The packets are measuring cups. Fill past the line with water to make up for the extra 1/2 packet.

2. Add 2 tsp frozen or fresh blueberries
or 3 small or 2 large fresh strawberries
Or mix them together in small amounts

3. Sprinkle cinnamon on top (as much as you want)

4. High altitude:
Microwave on High (1800 watts) for 2 full minute, stir, add more water
Microwave on High 1 minute, stir, add more water
Microwave on High 1 minute

5. Add Pure Maple Syrup starting with 1 tsp, taste, add more as you like but DON'T over do it. It's got minerals and vitamins and sugar. Sugar in high doses is NOT your friend.)

6. Pour on some milk if you're not lactose intolerant. 2% for me.

7. Take some Vitamin D3 1,000 to 3,000 units and Multivitamin for women with B12 if you've got it. (Get it) Always take the Vit D3 with calcium product or calcium citrate tabs.


Lunch and Dinner Foods in combination:

Protein:

2 Great Value Reduced Fat Mozzarella String Cheese
2 Tillamook Sharp White Cheddar Cheese snack squares
Half a plate of grilled boneless chicken breast (no oil, no seasoning)
Grated Parmesan


Veg:

Walmart Marketside Fresh Green Beans (steamed in microwave)

Fruit:

Cantaloupe, Tomatoes, Pineapple (all fresh)

Crackers: Mary's Gone Crackers Original (seeds!)

Cheat Snacks:

Ruffles Original
Walker's Shortbread fingers
Fritos Original
Lemon Loaf from the Food Bible linked above
Sometimes I'll have a string cheese and fruit for a snack.

(Currently substituting the cheat snacks for the Mary's Gone Crackers. Can't say why because it's part of something I'm preparing for your mother. 8-) But the crackers are great!)

All of the above foods listed have come and gone several times over. Broccoli, baby carrots are on hold again until I summon the courage.

New Foods on Hand: Quinoa and Brown Rice Pasta (See the dream? Pasta or Quinoa, chicken, veg with parmesan!)

Comments from the trenches: I used to worry about wasting food. Now I just throw it out the back door to the deer and whatever wildlife finds it, and move on. I've purchased special flours and garlic infused olive oil. All over the top pricey. When I eat the cheat snacks I often over do it and pay for it all night long until I fall asleep at 4 am. I think...one of the problems I have is irritating the gut all over again. I think I can tell what did it and I know to go back to basics. The Low FODMAP diet is crazy making. I still don't know what FODMAP stacking is. The Food Bible linked is a great help.

My current status: Weight is stable, slightly increasing. Bloating is greatly reduced unless I overdo the cheat snacks which can then become triggers. Morning tummy feels normal. Symptoms onset just between lunch and dinner. They're different now and reduced from what they were. I try not to eat anything past 7 pm and drink water throughout the day. I do drink tea (Liptons, 1 tsp sugar, and milk) during the day and evening, always drink water with it. I'm ready to try Margherita pizza from the local brewery and Red Robin burger and fries again. Energy is 90% normal.

I am significantly better than I was this time last year! The anxiety has been replaced by determination. Last 2 years I faked my way through the holiday season. I smiled through constant pain, dizziness, exhaustion, and anxiety attacks. This year I loved every single bit of it!

It feels like climbing a mountain, I know. If I can be better, I think for sure you can overcome as well. I never once lost hope or faith. Though I told the Lord so many times "I'm at mustard seed level." I am convinced that he sees us, he hears us, and he feels our pain.

For we have not an high priest which cannot be touched with the feeling of our infirmities; but was in all points tempted like as we are, yet without sin. Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need. Hebrews 4:15-16 King James Version (KJV)

I have been traumatized, isolated, stripped of pride, faced with my own hypocrisy, and humbled. I've learned levels of patience that I didn't even know existed. But more than anything else, I learned something I always thought I knew but didn't really understand. I learned what it means to come to the Lord as a child. I do think there is purpose in our suffering and a plan in place. I've changed in ways that I never imagined I would. I still don't know how Paul could be content in all situations. I've tried and typically ended up crying or angry, or both.

When I first felt signs that I was rising up this past Fall, I bought a t shirt reminds me so much of the road I've been on for 3 years.
Mustard Seed Moving Company
Moving mountains since Matthew 17:20
I hope something I've shared here is helpful to you. Start with your chicken and rice, and build on it! Move forward, expect setbacks, take a break, then baby step your way forward again. If I think of anything else that might help, I will pass it on. But in the mean time, just know that there is a lady in the Rockies who continues to think about you, understands what you're going through, and prays for the girl she doesn't even know.

<3


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Darling daughter just texted me that she thinks she’s going to have to eat plain chicken and rice for the rest of her life. Everything else hurts.
Believe her. Absolutely believe her. Feel free to copy/paste my above message and share it with her, copy the food, supplements, meds or edit it any way you like if there's part that you think could help. There is no cut and dried answer to this. It's a long, long, long haul. There are many learning curves. One's that I haven't come close to mastering or understanding. What helps one person, doesn't help another. Truly, one food seems okay and until it doesn't. She's afraid to eat, Weaps. I know it like I know my own name.

The difference is that I'm no longer afraid to eat though I might be in such a good place, I'll procrastinate on reintroducing foods until I'm good and ready. Look at how long this thread is. How many times did I say I think I can be better? How many theories did I come up with? How many solutions? How many appointments that lifted me up or shot me down? How many times did my docs overlook information that was written in test results by some other doctor when they had it in front of them? How many times did I start to feel better only to end up in the ER not long after? How many times did my weight start to come up only to plummet again? How many foods came and went, then came back again? It's absolutely exhausting!

I can say without question, I am miles ahead of where I was at last year or the year before. I know it. I feel it. I'm living it.

And she can move out forward, too.

I'm not 100% by any means, still get symptoms but they're different now. They don't scare me. Nothing scares me now. I'm more driven than anything else.

Shutting up now.
LIGHT HAS A NAME

We only get stronger when we are lifting something that is heavier than what we are used to. ~ KF

Slava Ukraini!
msnobody
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Re: Help wanted (Score so far related)

Post by msnobody »

Thank you, Jerz. I sent the information to her in an email. A lot to digest— pardon the pun. As they say, gotta laugh to keep from crying.
"Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them." Psalm 139:16 ESV
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