Help wanted (Score so far related)

[msnobody]

I wish I could share some lbs. with you. I’ve lost 38 lbs. and pulling things out of the closet to wear that used to be tight— mainly scrub tops. They look kind of crazy with my one and one half size too big scrub pants. I can pack all kind of stuff in the pockets; keys, water bottle, can of Cherry Coke Zero, protein shake, though.

If you feel you have a firm diagnosis now, maybe there is a discussion board where you can read what others have to say about their own experiences, and foods to try or avoid.

I am thankful for you, Jersey, first of all for just you being you. Also, you help me to see things in a different light sometimes. I appreciate your prayers for me and my family. You are good to listen when I’m having a pity party, and good to help me recognize when it’s time to break up the party. You are a very dear and kind person. There is a lot of suffering we have to endure in this earth life 101. Thanks be to God that it won’t always be this way. We DO have a lot to be thankful for, and should think on those things, and often.

I hope you can re-introduce foods that you can enjoy and tolerate without difficulty.

[IWMP]

I wish I could share some lbs. with you. I’ve lost 38 lbs. and pulling things out of the closet to wear that used to be tight— mainly scrub tops. They look kind of crazy with my one and one half size too big scrub pants. I can pack all kind of stuff in the pockets; keys, water bottle, can of Cherry Coke Zero, protein shake, though.

If you feel you have a firm diagnosis now, maybe there is a discussion board where you can read what others have to say about their own experiences, and foods to try or avoid.

I am thankful for you, Jersey, first of all for just you being you. Also, you help me to see things in a different light sometimes. I appreciate your prayers for me and my family. You are good to listen when I’m having a pity party, and good to help me recognize when it’s time to break up the party. You are a very dear and kind person. There is a lot of suffering we have to endure in this earth life 101. Thanks be to God that it won’t always be this way. We DO have a lot to be thankful for, and should think on those things, and often.

I hope you can re-introduce foods that you can enjoy and tolerate without difficulty.

I just have to agree with the wonderful things msnobody says here. You are one of my favourite people. You go above and beyond for others, are thoughtful and kind. Talented too. I am sending so much love your way and positivity and truly hope that the antibiotics are the beginning of a new chapter in your life and hopefully as time progresses you will be able to enjoy food more.

I love your list of blessings. Keep swimming. I'm sure I wouldn't be wrong if I said we are all rooting for you. <3

In response to your questions about my FIL I think he just accepted being thin. But he didn't have a heart condition that interacted with food so I think that makes a big difference. I think he ate plain British food as lean as possible. He was always very thin, as far as I am aware.
There didn't seem to be much conversation about it, it was just normal. He didn't process fat and he didn't seem to eat beyond the expected meals. Lots of cups of tea. I don't think he could have gained weight if he tried.
I don't believe he had serious side effects but I do think he may have been taking various medications relating to stomach issues, pretty sure he took lansoprazole.

[Jersey Girl]

Msnobody and Pirate...I saw your comments here when you posted them. You both brought tears to my eyes. I have just not had the wherewithal to make a thoughtful reply. Brain fog is making it hard to concentrate so just making hit and run posts around here. I'll try my best to reply soon...please don't notice any typos. I've been messing up all the time lately.

Love you ladies!

<3 <3

[Jersey Girl]

Update...Only because I need to journal the meds.

1. Started the 3rd and final round of kill pills tonight. I literally begged for a 3rd round with no break between rounds this time. Told the MA to tell the NP that I'm not requesting, I'm begging and pleading. Only had to skip 2 days instead of 2 weeks this time. I had to fight with Tricare to get a waiver. That level of stress made me feel I was working up to a panic attack. That happened one other time this month over something else. I try to accept that I'm not my whole self right now and keep going forward.

2. Still have symptoms on and off. Not as strong as before I started the kill pills. Have had strong symptoms a couple of times though. Didn't trigger my heart but one night came pretty close. Almost 2 months Afib free. Only had 2 episodes in August before I got the antibiotics going. Not too bad.

3. Food..what food?

Tried adding pure pumpkin puree to my oatmeal. It wasn't offensive. Wanted to up the nutrtion. Mild symptoms. I lived.
Tried lettuce and tomatoe instead of sweet potatoes with my chicken. Drizzled with a hint of Ranch the first time...I was fine. Second and third time forget it...symptoms.
I don't remember anything else I tried.

I ate potato chips for dinner tonight and I don't care who knows it either. No symptoms.

4. Other symptoms

Brain fog to the max. I can't keep a thought in my head for 5 seconds. I know this sounds like "me" but I assure you, I'm not all "there". Sent off an email to a friend and when I looked it over again, and about died when I saw all the typos. Either my fingers type too fast or I can't pay attention right now. I need to send off another email to the friend but putting it off until I can sit with it and be thoughtful about it. I do that with people here on the board, too. I'm not ignoring people and it's not that I don't care. It's that I DO care to take time with a reply. by the way, I'm still operating a motor vehicle on the road but not all that often.

Elevated temp. Didn't take my temperature but I'd say just elevated...not full on feverish.

Dizzy...not all the time comes in bits.

Emotional ups and downs---sometimes I'm perfectly fine and my hope and joy is intact. Other times I get weepy. I just go with it whatever it is. I was in tears earlier today and now I am not. Go figure.


Energy, what energy? Depends on sleep. Good days I can go a good 12 hours before I crash. Bad days I wake up already crashed and just poke around through the day to do what I can do.

Aches---back and side. Intermittently.

Haven't been able to hear well out of my right ear for over a month now. I need to get checked. I think if the medication were ototoxic both ears would be affected. I'll get that figured out soon.

Follow up with Gastro next week. Going to revisit probiotics again.

Good things...

I finished another category of crafts. Very satisfying!

Managing the business Facebook page for the craft association... the members continue to make enthusiastic comments to me. Really makes me feel good! The back end of a business Facebook page has a lot of moving parts and now I have a dual identity on Facebook which is a little disorienting at times. Think I'm doing a pretty good job considering the circumstances. Brain fog is not my Facebook friend.

Went to the UPS store for Amazon returns. No one was there but me and the staff. The woman who showed me how to do the self serve stood next to me and said "You're so tiny you look just like a little doll." and gave me a little side hug. I kind of thought that was nice to say. Made me feel good in the moment until I turned around to leave and felt dizzy. I'm slowly getting used to dizzy.

So about the back and side aches. I saw this...pretty sure this is what's going on.

[Jersey Girl]

One more then off to sleep...

Another chapter in the continuing saga of "How block headed is Jersey Girl the Brain Fog Queen?"

I've been thinking about adding back my non-fat Greek Yogurt. Still have some and I like it. Sometimes get mild symptons but it's like a dessert plus protein.

In the past two days I've been discussing adding probiotics that the NP recommended with two family members. I shared that I'm a little concerned that adding live bacteria to fix up my digestive soil content (like adding compost right?) might result in an onslaught of bloating.

What's in the Greek Yogurt?

Live bacteria cultures.

In other brain fog news...I picked up a pair of reading glasses just now to make this post.

I already had a pair of reading glasses ON.

Yours truly,
The Brain Fog Queen and resident Block Head Extraordinare

(I had to edit the first line of this post. It originally said "One more the off to sleep." Definitely not all there right now. It's probably permanent.)

[IWMP]

Have you seen a Dr recently Jersey Girl? I think you need to get this checked up. This all sounds a little alarming. I partly think it might sound more alarming than the situation really is because that happens to me when I try to log everything but your symptoms sound worrying. I hope you feel better soon. Xx

[Jersey Girl]

Have you seen a Dr recently Jersey Girl? I think you need to get this checked up. This all sounds a little alarming. I partly think it might sound more alarming than the situation really is because that happens to me when I try to log everything but your symptoms sound worrying. I hope you feel better soon. Xx

Yes I've been having follow ups and communicating with the NP through her MA (medical assistant) who recently let me know that she's consulting with the Gastro doc himself. His main thing recently is probiotics. The symptoms I listed are all part of the package with the infection and it's treatment. I alreay knew that. This antibiotic I'm on is high potency if that makes sense...it's powerful and it kicks my butt some days. They use this because it goes right to the digestive tract and selectively targets bad bacteria. A common course of treatment is 28 days so that is what I am accomplishing right now since I think it's the exact right thing to do. I see the NP next week. Recall that first PA who did nothing but let me suffer another 5 months? The NP I have is right on it thank God. If you look at the medication it's being used off label to treat Sibo because of what I said above. Example: In order to get it approved the NP had to indicate that I have IBS with diarrhea--I have neither.

But Lord...today I feel NORMAL! Not normal energy but tummy wise...I feel NORMAL.

Here I pulled this off Mayo Clinic about Rifaximin. Bolding what side effects I have. Just going down the list there's a lot of repetition there.

Side Effects
Along with its needed effects, a medicine may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention.

Check with your doctor immediately if any of the following side effects occur:

More common
Anxiety
Black, tarry stools
Bladder pain
Bloody or cloudy urine
Difficult, burning, or painful urination
Dizziness or lightheadedness
Frequent urge to urinate
Lower back or side pain
Muscle spasm
Rapid breathing
Trouble sleeping

Less common
Blood in the urine
Bloody nose
Chest pain
Continuing ringing or buzzing or other unexplained noise in the ears
Fainting
Feeling of constant movement of self or surroundings
Increased heart rate
Sensation of spinning
Sunken eyes
Ulcers, sores, or white spots in the mouth
Unusual bleeding or bruising
Unusual tiredness or weakness

Incidence not known
Cracks in the skin
Hives or welts, itching skin, or rash
Large, hive-like swelling on the face, eyelids, lips, tongue, throat, hands, legs, feet, or sex organs
Loss of heat from the body
Red, swollen skin
Redness of the skin
Scaly skin

Some side effects may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. Also, your health care professional may be able to tell you about ways to prevent or reduce some of these side effects. Check with your health care professional if any of the following side effects continue or are bothersome or if you have any questions about them:

More common
Bloated----I think that's the "die off" period where bacteria are dying and emitting toxins.
Constipation
Difficulty with moving
Excess air or gas in the stomach or intestines---Same as bloating
Fever--elevated temp...didn't take temp when I felt that way, wasn't concerned.
Frequent urge to defecate
Full feeling
Headache--with the first round of treatment.
Muscle pain or stiffness
Pain in the joints
Passing gas
Stomach pain or bloating
Straining while passing stool
Swelling of the hands, ankles, feet, or lower legs

Less common
Abnormal dreams ----Panic dreams twice, One absolutely lovely dream,
Blurred vision
Chills
Confusion
Cough--dry cough not a lot of it
Decreased urination
Difficulty having a bowel movement (stool)
Dizziness, faintness, or lightheadedness when getting up suddenly from a lying or sitting position
Dry lips
Dry mouth
Ear pain
Feeling of warmth
Hearing loss--not sure what that will end up being about.
Loss of appetite
Loss of taste
Nausea--rarely but have had it
Painful or difficult urination
Pale skin
Redness of the face, neck, arms, and occasionally, upper chest
Sore throat
Sweating
Swollen glands
Thirst
Vomiting
Wrinkled skin
Other side effects not listed may also occur in some patients. If you notice any other effects, check with your healthcare professional.

Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088.

[Jersey Girl]

Forgot to say this. Brain fog can come with the SIBO. I've seen it in research studies. Studies about gut/brain connection. I also think that because I can't hear out of one ear that that might be causing the feeling if dizziness. I won't know until I get that ear checked out. I have multiple appointments this month alone and I need to squeeze that in. There could be something going on in my sinuses that affects that one ear and therefore obstructs hearing and results in some dizziness. I've never felt like I would pass out and hit the floor. Just a momentary feeling of dizziness.

Sometimes I ask myself how in the heck did I get to this place? And how do you sort out this or another thing?

I'm not alarmed any more about any of this. I have had good days so I know I can have those again. Like today. I have it right now.

I figure that seeing to gut healing is priority. Everything else...especially weight gain depends on that one thing.

My only regret in this is that I didn't see a doctor earlier last year. We were hit with a storm, insurance claims, and work crews, and I just got lost in it all. I painted the kitchen during that time and took about a month or more to finish where normally it would have taken 2 days. I remember standing on kitchen counters feeling dizzy but I kept going thinking I would feel better soon--and that never happened. 6 attacks of afib and 4 trips to the ER. Then the holidays came and so on and so forth. It was like a blur. January of this year is when I had the scopes. A 5 month gap in getting actual treatment on account of that horrible PA who is no longer there now. No surprises there.

Hindsight is 20/20 but had I gone directly for care right then it probably would have been over and done with, much easier to beat, and just be a memory. But I didn't and this is where I'm at today.

I'm trying to do myself what I tell everyone to do. Be kind to yourself. Stop putting needless demands on yourself. Life isn't normal right now. Stop trying to live it normally.

[IWMP]

Have you seen a Dr recently Jersey Girl? I think you need to get this checked up. This all sounds a little alarming. I partly think it might sound more alarming than the situation really is because that happens to me when I try to log everything but your symptoms sound worrying. I hope you feel better soon. Xx

Yes I've been having follow ups and communicating with the NP through her MA (medical assistant) who recently let me know that she's consulting with the Gastro doc himself. His main thing recently is probiotics. The symptoms I listed are all part of the package with the infection and it's treatment. I alreay knew that. This antibiotic I'm on is high potency if that makes sense...it's powerful and it kicks my butt some days. They use this because it goes right to the digestive tract and selectively targets bad bacteria. A common course of treatment is 28 days so that is what I am accomplishing right now since I think it's the exact right thing to do. I see the NP next week. Recall that first PA who did nothing but let me suffer another 5 months? The NP I have is right on it thank God. If you look at the medication it's being used off label to treat Sibo because of what I said above. Example: In order to get it approved the NP had to indicate that I have IBS with diarrhea--I have neither.

But Lord...today I feel NORMAL! Not normal energy but tummy wise...I feel NORMAL.

Here I pulled this off Mayo Clinic about Rifaximin. Bolding what side effects I have. Just going down the list there's a lot of repetition there.

Side Effects
Along with its needed effects, a medicine may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention.

Check with your doctor immediately if any of the following side effects occur:

More common
Anxiety
Black, tarry stools
Bladder pain
Bloody or cloudy urine
Difficult, burning, or painful urination
Dizziness or lightheadedness
Frequent urge to urinate
Lower back or side pain
Muscle spasm
Rapid breathing
Trouble sleeping

Less common
Blood in the urine
Bloody nose
Chest pain
Continuing ringing or buzzing or other unexplained noise in the ears
Fainting
Feeling of constant movement of self or surroundings
Increased heart rate
Sensation of spinning
Sunken eyes
Ulcers, sores, or white spots in the mouth
Unusual bleeding or bruising
Unusual tiredness or weakness

Incidence not known
Cracks in the skin
Hives or welts, itching skin, or rash
Large, hive-like swelling on the face, eyelids, lips, tongue, throat, hands, legs, feet, or sex organs
Loss of heat from the body
Red, swollen skin
Redness of the skin
Scaly skin

Some side effects may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. Also, your health care professional may be able to tell you about ways to prevent or reduce some of these side effects. Check with your health care professional if any of the following side effects continue or are bothersome or if you have any questions about them:

More common
Bloated----I think that's the "die off" period where bacteria are dying and emitting toxins.
Constipation
Difficulty with moving
Excess air or gas in the stomach or intestines---Same as bloating
Fever--elevated temp...didn't take temp when I felt that way, wasn't concerned.
Frequent urge to defecate
Full feeling
Headache--with the first round of treatment.
Muscle pain or stiffness
Pain in the joints
Passing gas
Stomach pain or bloating
Straining while passing stool
Swelling of the hands, ankles, feet, or lower legs

Less common
Abnormal dreams ----Panic dreams twice, One absolutely lovely dream,
Blurred vision
Chills
Confusion
Cough--dry cough not a lot of it
Decreased urination
Difficulty having a bowel movement (stool)
Dizziness, faintness, or lightheadedness when getting up suddenly from a lying or sitting position
Dry lips
Dry mouth
Ear pain
Feeling of warmth
Hearing loss--not sure what that will end up being about.
Loss of appetite
Loss of taste
Nausea--rarely but have had it
Painful or difficult urination
Pale skin
Redness of the face, neck, arms, and occasionally, upper chest
Sore throat
Sweating
Swollen glands
Thirst
Vomiting
Wrinkled skin
Other side effects not listed may also occur in some patients. If you notice any other effects, check with your healthcare professional.

Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088.

AHH sorry. That is a lot of side effects. But it sounds like it is worth it if it works. It sounds like they are nuking your gut to fix it. How long do you have left?

[IWMP]

Msnobody and Pirate...I saw your comments here when you posted them. You both brought tears to my eyes. I have just not had the wherewithal to make a thoughtful reply. Brain fog is making it hard to concentrate so just making hit and run posts around here. I'll try my best to reply soon...please don't notice any typos. I've been messing up all the time lately.

Love you ladies!

<3 <3

<3 love you too.