Help for .. Gut Dysbiosis / Worsening P.E.M. / Reaction to Water?

Shanti1

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I've been on the same Kate Farms Peptide 1.5 formula for the past two years, and it's very simply put together. According to them, everything is broken down into its simplest form. And this was the only formula I was able to tolerate, mostly due to its not having any dairy-related components.
I did pull up the Kate Farms Peptide 1.5 formula. It really looks quite healthy and well made compared to other formulas, but it would be permissive of SIBO as there are fermentable sugars and fibers.
(link to formula: https://www.katefarms.com/for-clinicians/products/peptide-1-5-plain-formula/)

Ideally, SIBO is diagnosed with a breath test, but other clues are worse after eating high fiber-containing foods/starches and better avoiding them. I know that this is hard for you to evaluate.

Treatment options are:
Elemental diet- They do make them for feeding tubes. There is one from Integrative Therapeutics that is dairy-free and clean.
Antibiotics- Typically Rifaximin sometimes in conjunction with others
Natural Antimicrobials- There are several options

Anyhow, I know that your situation is challenging with limited resources, so please just ask if you want more info on anything. I don't want to overwhelm. Due to limited motility, SIBO is almost certainly a part of your symptom picture.

Sending you my very best
 

Shanti1

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@Howard I should also mention that SIBO will reoccur unless diet and motility can be changed. In your case, this would probably mean you would need to take something ongoing to keep it at bay- not a one-and-done. Besides gas and bloating, SIBO can lead to brain fog, fatigue, and mood changes due to the absorption of bacterial substances. Just wanted to give a little more of a complete picture.
 

Howard

suffering ceases when craving is removed
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a bit behind...

Additional Responses

@sometexan84

Thanks for the explanation. And I do keep testing positive for active Epstein-Barr virus, but beyond that, I'm not sure what else is lurking inside my intestines.

I also read your other link, and then one of the papers regarding Lambda 1a. Based upon my diminished reading comprehension skills, it looks like they're running several trials. Very interesting.

I'll also check and see about purchasing some triple distilled water. Perhaps it'll help.


@christiankatz

So it definitely sounds like rotting teeth are capable of worsening bodily fatigue. And also based upon lenora's experience, it seems I'll have to push forward on this.

@lenora

Urine output is basically the same. Fluid intake is always the same, daily. Approximately 32 fluid ounces total. But in recent weeks, I've been going four days with dark urine, two days normal color, three days dark, and so on.

Thanks for the well wishes. :)

H
 

Howard

suffering ceases when craving is removed
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Teeth Issue Solutions

I know I make my personal situations into a whole decision making event, but really, I don't have anyone else to help resolve these types of situations. Admittedly I get overwhelmed at times.. not wanting to choose incorrectly. So I really do rely on this help I receive here. Which leads into…

Hospital or Office Options

Option A - The earliest possible appointment to have a single tooth pulled is October 5th. The effort required to do so (to pull one tooth), wouldn't be worth the physical suffering I would incur.

Option B - Pulling multiple teeth at this appointment isn't a preferred option, because they can only give me so much novocaine at one time, and also, there's an issue because I cannot handle epinephrine (so the novocaine wears off rather quickly). Extracting multiple teeth while I am already in a non-responsive state seems.. risky at best.

Option C - In order to have multiple infected teeth pulled it would likely need to take place in a hospital setting by an insurance-covered oral surgeon (for me, there are only two available in-state, covered by my state insurance).

They said I'd have to wait until spring of 2022 before this could happen.



Just now the primary physician called back -

Options B and C are off the table. There's nothing anyone can do to help. And I am not surprised. They did order a prescription for an antibiotic (Augmentin @10 days worth) and then after it runs out, I'll just have to wait until October 5th. Have a single tooth pulled. Wait a few more weeks. Have another pulled, then repeat until there's nothing left of me, or my teeth.

Yes. This is exactly the reason why people like us take our own lives (not that I would ever do that).

Reminds self - Suffering is a choice. Acceptance is my only option.

Of course, its not all bad. Perhaps the antibiotics will help me regain some energy.

So for now it's mouthwash. Switching to triple distilled water. Pain management (I have some Tylenol 3 from 2017). Antibiotics. Probiotics.


@Shanti1

Thank you for the responses. Currently processing. :)

H
 
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I know I make my personal situations into a whole decision making event, but really, I don't have anyone else to help resolve these types of situations. Admittedly I get overwhelmed at times.. not wanting to choose incorrectly.
very understandable, I am forever impressed with the wealth of GREAT suggestions folks around PR come up with. I'd ask this group, for SURE.

These are tough decisions.

RE: teeth. I'll spare you a bit , but we went thru a full dental nightmare with my husband, and for what is worth, he no longer has any teeth. And he is the better for it. Both his parents had full dentures, and were the better for it.

This does not help me, with my half of them missing, and more on the trajectory, soon enuf. And my mouth swells up daily. Trying to push my teeth out.

If the given tooth is wanting to come out, sometimes they cooperate. They just sort of almost fall out. Its possible you might not need alot of novacain, depending.

I'm real sensitive to novacaine plus need gobs extra due to red head genetics.
 

Howard

suffering ceases when craving is removed
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This is an unnecessary read (unless you are just plain curious or REALLY REALLY bored), but I felt I'd offer an update, along with an outline of my newfangled plan.. as perhaps I'm not considering something.


Plans Set in Motion

I was feeling progressively worse each successive day, until today. My doctor put me on Amoxicillin and Clavulanate Potassium tablets (for the infected teeth) a couple of days ago, and I do not feel as poisoned overall. Plus, I can now move side-to-side in bed once again.

Clearly, I never realized bad teeth could be so negatively impactful. The bloating and intestinal distress is also less prominently featured today (upped my probiotic as well).

Now I've got to solve the other half of the equation, how to get rid of the bad teeth as quickly as possible, without putting myself in harm's way.

The Solution: Fixing Teeth

Because it appears as though my only option is to go through with my October 5th dentist appointment (having only one tooth pulled at that time), I've decided to move out of my home and into an adult adult care center (covered by the state). By doing so, paramedics won't have to haul me up and down the difficult stairs multiple times just to get each and every infected tooth pulled.

This may sound like an overreaction to some, but in my current physical state, not taking drastic measures could be a simple matter of survival. Yes, perhaps I am being overly dramatic (I am fearful), but my primary concern is being able to breathe freely on my own after successive instances of "exertion" (especially as it involves the direct pressure applied to my muscles, which triggers severe P.E.M.) My respiration becomes labored 20-minutes post stimulation.

So after not having experienced my current level of severity since 2017, I am doing my best to assure a positive outcome.. instead of just going along with whatever it is others want to do to me. No one else suffers the outcome except me.. something each of you well understands.

How Taking This Action Helps: the advantage of moving out (temporarily)

It wouldn't be necessary for five paramedics to carry me down difficult twisting turning stairs wrapped up like a burrito. Therefore, all of my physical efforts to recover AFTER the dental procedure (not that big a deal) would be solely focused upon each individual tooth extraction, rather than head-to-toe muscle recovery.

Then maybe after the infected teeth are removed, I will physically recover some of my previous energy. And then possibly I could return home in November. In the least, my wife will be free of being responsible for me.. a sort of extended vacation for her.

Also, my case manager said she would sign off on this. I expect my doctor will, too. I also have a list of potential (more highly rated) care centers bookmarked. I learned my lesson after my 2015 experience, so now I plan on getting second and third opinions regarding preferred destinations. Additionally, I can communicate a lot better than last time, and I know how things work.

I suppose the only thing that would prevent me from following through on this plan, would be if I somehow improved by leaps and bounds within the next couple of days. Otherwise, I need to get this plan in motion, as it typically takes seven days to place somebody.

Thanks for all the help, everybody. I keep learning things. Of course, I'd rather learn other things instead.

H
 
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(unless you are just plain curious or REALLY REALLY bored
I had a tooth panic attack last nite, @Howard, so I am really really CURIOUS.

(this occurred because of chewing on udon noodles, yes I can still chew, but hardly).

So because of you Howard, and this triggering incident, I'll be calling this new dentist I have to meet, as my good one retired due to COVID, next week. Then I have to explain "all this" to that new person, and how their list of approved procedures and fixes, won't be happening in my case.

Now that I am vaccinated.

So GREAT NEWs your vaccinated, Howard. That facilitates moving this issue along.

i felt SO MUCH BETTER after the bad tooth left. Yes a bad tooth can be very impactful.

YOUR PLAN MAKES ALOT OF SENSE. I think your to be commended for coming up with it, and its wonderful the system has some viable mechanism for this to happen.

A recommendation: can you write up a simple, brief succinct : Instruction Manual For Howard.....

so you don't have to do alot of explaining etc, just a bullet list of:

I eat this,

I avoid that.

Do not do this.

Do not do That.

And then we'll hope to receive another immersive expose on your Brief and Spectacular - dental procedures.
 

christiankatz

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I've decided to move out of my home and into an adult adult care center (covered by the state). By doing so, paramedics won't have to haul me up and down the difficult stairs multiple times just to get each and every infected tooth pulled.
Thanks for letting us know, @Howard. I hope all goes smoothly, and you'll be back home in Nov. It's so nice to know you're feeling better now.

i felt SO MUCH BETTER after the bad tooth left. Yes a bad tooth can be very impactful.
I totally agree with you, @Rufous McKinney. It's awful how many problems teeth can cause. I've heard even root canals hold a lot of bacteria and cause a lot of health problems, so may as well yank the teeth out.
 

Zebra

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Hi, @Howard!

Just want to say that I am so sorry that you are so ill.

It's so ridiculous that, for some of us, something as "simple" as a trip to the dentist can become so insanely difficult and even detrimental.

The plans you have in place seem smart and well-considered.

Maybe drop us a note from the adult care facility if you have the energy?

Best wishes,
Z
 
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I've decided to move out of my home and into an adult adult care center (covered by the state). By doing so, paramedics won't have to haul me up and down the difficult stairs multiple times just to get each and every infected tooth pulled.
Sounds like a pretty good plan @Howard and you can always move back home early if it's not such a good place.
 
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Second star to the right ...
I've decided to move out of my home and into an adult adult care center (covered by the state).
Given that the best option, Option C (hospitalized removal of all three offending teeth at once) has been taken off the table, this appears to be the next best thing, and I salute you for taking a risky, difficult step with dispatch.


My only concern is the rampant COVID in many care centers, and the high numbers in Arizona especially .... if you come down with a breakthru COVID infection in spite of being fully vaccinated, your options for going back home could be severely curtailed, along with any other healthcare decisions you ight want to make.

You might want to look into this, and anything else that could inhibit your freedom of choice in where you live, and equally important, your choice of healthcare and treatment options before pulling the trigger.

Cheering for you all the way ..... stay chirpy !!! :thumbsup::thumbsup: :hug::hug::hug:

EDIT .... for soething that I thought Id already included, but hadn't .....
 
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lenora

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Hi @Howard....Well, it's almost a week later. Any progress at all? I can't/won't pretend to know everything your going through, but I'm wondering if you're feeding times could be changed and all water intake stopped in the afternoon? Personally, I seldom have anything (except for pills) after 2:30 p.m. - 3:00 p.m.

Also, even though I'm sure you're tried this, what about changing your position after a feeding? It may/may not work....stomach problems are so hard to solve. I'm sure you've tried foam inserts that can make you incline, or perhaps that's the problem. You're bending at the wrong angle.

How are things going with the dentist? I would definitely try a Water Pik as it may help with some of this dental trouble. Hate to keep pounding on it, but it's the next best thing to flossing, or maybe just as good as. Feel better (I wish I could magically tell you how). Yours, Lenora.
 

Joopiter76

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@Howard

I have also dark Urine. When I have this I feel better as the crap comes out. I’m in very bad shape. If Urine is normal or quite clear (only slightly yelliw) I feel much worse. I think this is tge liver but bilirubin us normal. It’s because liver doesn’t detox. But I wonder why the crap comes out with urine and not with the stool through bile secretion. My legs hab turned numb and I can hardly walk in my home. Feeling hortibly poisend all the time, better in the morning. I have horrible intolerances to most medications and some rashes on my body sometimes I get bruises on my legs. Eyes always with some headache like pain. Reacting badly to most methylation supps. I was thinking if this is because Liver Phase II detix ist extremely blovked and increasing phase I by vitamins only causes more toxic intermediate products. I very interested to hear from those who had dark/Irange Urine what came out they have at the end. I often have cloudy Urine too. With intense crystaline sediment.