Can't function with or without carbs anymore

outdamnspot

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I brought this up in a thread about going to the ER for ME/CFS and @Shoshana suggested making a new post (even though I feel like a broken-record at this point :(). I've been battling progressively worse food intolerances over the past 8 months, but really feel like I'm at a dead-end now.

Over summer in Australia, I found my intolerances weren't as bad and I could cycle between days of eating zero-carb/carnivore, and then have maybe 3-5 days where I could tolerate other carbs like beef liver or avocado. Sometimes I'd get a kind of manic/histamine energy from eating these foods, then eventually grow intolerant or crash and have to cycle off; once my gut 'reset' I could add them back in again. This also let me sometimes attend medical appointments since my energy was a lot more sustainable on carb days.

However, things have been a lot worse over winter and it seems I can't have carbohydrates at all now; as soon as I eat any beef liver (too scared to go near avocado at this point), I am hit by the most profound lethargy and fatigue the next day; it's like dragging myself mentally and physically through mud. My digestion slows down and I become constipated. My gut feels coated in some strange mucus and my sinuses become blocked too. I get profound depression/anxiety/brain fog. But I know I need carbs, because even in these states, my nervous system is a lot more calmer and less over-reactive to threats.

Once I cycle off carbs completely (besides lemon juice), the fatigue and constipation and mood issues lift, but I am just running on adrenaline and crash so easily. Trying to keep this up for 4-5 days has ended in some really scary crashes where I could hardly make it up the stairs.

I managed to see two GPs near my house but both said that SIBO and food intolerances aren't their area to deal with and that I will need to see a gastroenterologist, but I have no idea how I'd get to one because neither state (carbs or zero carbs) leaves me at all functional. My family are terrible and just leave me to look after myself.

I mentioned this before, but I had an inkling my food issues might reach this point and so kept an antibiotic on hand that was given for a flu a few months ago (Doxicycline). I feel like my only choice at this point might be to try it myself, because if I can alleviate my food intolerances (even temporarily) it might let me get some help. I think my main hesitation has been in potentially crashing myself further from trying it (due to potential die-off etc.), and I also keep wondering if I should just start it on a day I've eaten carbs (where I feel awful, but at least a little more resistant to crashes) or on a non-carb day where I can think/make decisions but am more prone to crashes. Fretting over this has just left me procrastinating and not doing anything at all. I am pretty sure from everything I've read that this issue is SIBO though and it seems like an antibiotic could potentially give me a lot of relief?
 
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I was on the same boat twice. I did gaps with rotation combo and took care of it. But that took too long, this last time I did a cabbage juice w intermittent fasting and was ok after 5 days. I like the latest approach better since it got me eating anything faster. Not a cure but makes all the difference in the world ( if tummy is ok, I can take meds, live much better)
 

Wolfcub

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Is beef liver carbs? I thought it was surely protein?
Meat on its own is definitely going to slow down gut transit, and causes constipation. That could make you feel pretty rotten, and will make everything else worse re: exhaustion and just feeling generally terrible.
How do you do with fibre? Vegetables of any kind? Seeds, like flax seed or others?
 

Wishful

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Maybe experiment with some pure forms of foods: amino acid blend for protein, refined oil for fats, refined sugar or starch for carbs. Whole foods, such as liver or avocado would be a blend of all those food groups, plus various chemicals that might affect you on their own, so it would be hard to isolate what is causing your problems. Also, try refined fibre, both soluble and insoluble, to see what effects they have.

Lemon juice might contain enough carbs (sugars) to mess up any 'carb free' experiment.
 

Judee

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Beef liver is actually a protein. I'm wondering if you are getting too much iron and copper from it. Men don't need as much iron as women and excess iron can actually feed bacteria in the body so if you have any infection going on it could make it worse.
 
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Probably so called "ropeworm". My situation is the same. Liver has insane amounts of vitamin A which is revving up your immune system against this uber creature - inflammation, you feel depressed, brain foggy etc. If you indeed have this, get ready for the real battle, but if you get rid of this infection, which most people have from the birth probably you'll feel like never before in your life because it really affects all of your body systems.
If you look it up elsewhere, most links will say it's not real, but my advice for you is to check it for yourself, by trying one of the elimination methods to see if it's there. Or you can wait 0-10 years for the "scientists" to approve it because "science" became sort of a religion now - if authority is not approving, researching, funding something then it can't be real, mind is completely closed to new possibilities which sometimes don't fit in a previous model. That's absurd and not how real science works.
The most common theory is that is some sort of single celled organism becoming big blob with suction cups covered in the biofilm. It reacts to some of the anthelmintics. Wish you true healing.
You can find lots of useful info here:
https://www.youtube.com/user/michelinesbury
andreaskalcker.com
 
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Oh, it now actually hit me the day after eating a bit of liver (my bad) and whole very nutrient dense chicken (free range, almost wild). It's like your body, especially head and brain is put into the plastic baking bag and then in the oven on the low temperature - this quite severe stuffy feeling you want to run away from, but can't. Also confusion/anxiety that's quite different from adrenaline induced one, quite hard to explain, it has weird trippy feeling to it. Tongue becomes thickly white coated, pupils more dilated. It will pass within couple of days, but time really does slow down in this state.
If your experience is similar to mine and your symptoms somehow tightly connected to the food you eat whether it nutrient dense food, food with strong defense mechanisms like raw milk, honey, bread or just any carbs - you might consider "ropeworm" infection as a cause.
 

outdamnspot

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Sorry for the late replies. Been feeling unwell.

@Seven (formerly lnester7) why cabbage juice? I read on a SIBO blog that celery juice will kill strep in the gut (which I tested high for at one point) but can't find anything else confirming that.

@Wolfcub yes, according to google, beef liver does contain carbs (about 5g per 100g) and I definitely notice an effect along those lines. Unfortunately, all seeds, fiber and plant matter messes me up now; the last time I tried to experiment with iceberg lettuce it was a disaster.

@Wishful I actually noticed something very interesting with the lemon juice. Unfortunately, if I try to forego carbs completely, my energy levels tank horribly and the lemon juice can give me a small boost during the day, but I have wondered if the sugar/carbs could be contributing to SIBO. This is my eating schedule at the moment:

* Wake up and have a cup of coffee, then fast for 6 hours
* Have one lemon juiced in hot water, followed immediately by a coffee enema
*Eat my first meal and crash
*Have lemon juice again, followed by a water enema, then another small meal
*Fast until bed, then have another meal so I can crash/sleep

What I've noticed is that I can have good days where I am having the lemon juice twice a day. But occasionally, I was adding a third cup of lemon juice right before bed. It's too early to say with certainty, but I think that when I did this, I was waking up with terrible weakness/fatigue and then crashing the rest of the day. Because, I don't really know how the digestion of liquids works, but if you notice, the other two times I'm consuming the lemon juice, it's immediately being followed by a coffee/water enema. So what I'm wondering now is whether having it right before bed is allowing the sugar to feed the SIBO overnight and causing me to crash, whereas in the other two cases it's in/out of my system quicker?

I was having a good streak last week and then suddenly crashed and the only change I made was that 3rd cup. And I skipped it last night and feel a little better today.

Anyway, I saw my new doctor last night (who is actually great) and asked for a referral to a gastroenterologist in my area whose website claims he deals with food intolerances, so hopefully I will be well enough to see him and can get another opinion before resorting to self-treating. If I am right, then it is possible that the extra lemon juice has been contributing to the worst of my crashes. I will see how I go this week without it.
 

Wishful

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@outdamnspot sugar, or other quickly-digested carbs, in the afternoon to evening, will usually give me insomnia. I don't know whether it's microbiome related, or insulin related, or something else, but it's something I try to avoid. I don't have the same problem with slow-to-digest carbs (oatmeal, whole wheat flour).

You might try experimenting with slow-to-digest carbs, though I'm not sure how to do that without involving seeds, fibre or plant matter. I thought there would be complex sugars that are slower to digest, but apparently there's not much difference in digestion speed. Maybe microcrystalline cellulose? It's totally indigestible, and free from other chemicals that might be your issue with natural carbs and fibres. It might have some interesting effects, such as allowing you to have lemon in the evening without crashing. If nothing else, it might be good for your digestive system, since you don't have any other fibre. Better intestinal function might help with other symptoms.

Maybe it would allow you to skip the enemas, which probably aren't healthy long-term.
 

Wishful

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@outdamnspot I wonder if your treatments for digestive problems have put you in a downward spiral for dysbiosis. Maybe your first treatment caused an imbalance that made it harder to digest certain foods, so you needed another treatment, which disrupted things even more, and now you're at the point where you lack the microbes to digest most foods properly and keep bad microbes in check. I don't know if there are any professional experts at resetting microbiomes, but you might want to consider searching for one. Alternatively, I suspect there are online resources for DIY resets, complete with home-FMTs, which would probably work even if they're not ultra-superior olympic-grade. You might be at the point where incremental treatments won't be effective, so you need a 'major cleaning' and a fresh start.
 
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Just curious if the info I provided above sounds too insane so no replies? Really wondering how it looks like from other people point of view. If not only medical community seems it's a hoax but also relatively open minded (out of desperation) people from PR it is some next level thing. As I'm now fully sure it's a legit infection that can cause any symptoms including CFS like I want to somehow spread a word once I'm finally free of it.
@outdamnspot how long does this reaction last for you? Only the next day or longer?
 

pamojja

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You can find lots of useful info here:
https://www.youtube.com/user/michelinesbury
andreaskalcker.com
Just curious if the info I provided above sounds too insane so no replies?
The first link shows a 20 minute video of guy who just found out he got lyme, which is wasting one's time since it doesn't has any useful infos (other than what is commonly known about lyme). The second is a blog not in English, where one doesn't knows which article to drow at Google translate.

So absolutely nothing definitive about ropeworms on which one could comment on.
 
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First link is a channel where he has several episodes containing very unique and useful info on various topics. On the second one you can switch the language on the top of the site, it's mostly about chlorine dioxide
 

pamojja

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First link is a channel where he has several episodes containing very unique and useful info on various topics.
But why you don't directly link to the one you would want a comment on? And let people waste their time on a video without any information, which makes one doubt there is any useful there.

Not insane, just nothing concrete to comment on.
 

outdamnspot

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@Fuluf are you saying those particular foods kill ropeworm? The reaction to liver lasts a day for me but my tolerance for it has grown worse over time; it used to energize me.

@Judee you mentioned copper feeds dysbiosis. I was trying to read up on this earlier because I had some organic beef liver last night and felt terrible today and noticed a lot of 'yeast' like stuff in my stool. It's hard to know if the liver reaction is an intolerance or some kind of immune reaction. But there is conflicting info: some sources say copper is an antifungal/antimicrobial and other sources say it feeds candida?
 
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@outdamnspot unfortunately no food will kill them, it's a very hard infection to treat, food can "disturb" it and you will feel worse because of it, Vitamin A is stored in fat so it may accumulate over time and hence increased immune reaction. That is the case for me at least.
Hmm, that is very strange that the channel was deleted after 7 years of being there only after me posting the video here.
 

pamojja

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Hmm, that is very strange that the channel was deleted after 7 years of being there only after me posting the video here.
Might be a coincidence, Google the last months enacted new policies, censoring anything only from the far looking like alternative medicine. As with others, they are in bed with big-pharma. There are video interviews online, in which an executive of google made it clear: Trump wont become President again. Welcome to 1984.

Google changed from a search engine to an advertisement company. With that it does push with its searches, videos and other services the agendas of their paying industries.
 
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outdamnspot

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Saw a really nice gastro today. Honestly, it's a miracle I made it, because I think my body has almost hit its limit with the food issues (thank you sleep deprivation for the short term energy boost).

He understood my situation and frailty and said breath testing was a waste of time, and why hasn't anyone prescribed an antibiotic. I was hoping he'd choose Rifaximin but he gave me Bactrim. I was dumb and, knowing it would make me anxious, searched it on here and saw quite a few warning posts about how it's unsafe for ME patients and can potentially cause death. It's only a 5 day course.

Has anyone here taken Bactrim for SIBO or other infections?