Most Restrictive Diet Possible

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Hi fellow CFS'ers (I was going to say zombies but I thought that was rude, oh darn just did it...),
I'm coming off 5 months of intense daily antibiotic intake for treating Chlamydia P, and other potential bacteria... to no avail so the doctor I see suggested I stop the AB and focus entirely on diet. A very basic diet, eliminating potential offenders...

I did just proteins, veggies (broccoli, kale, cabbage, spinach, sweet potatoes, no nightshades...etc) with certain grains (flaxseed, chia seeds, quinoa...), and a couple more things, but I still continued feeling worse and worse, more and more impossibly sluggish and brainfoggy. Surely, there's something in even THAT diet that was harmful.

I've heard of the carnivore diet but it's so damn restrictive. What I've started doing is: just proteins (fish, lean meat, poultry, eggs), cut out all veggies except lettuce, and then avocados artichoke olives ginger garlic 95%chocolate thyme/rosemary teas, that's it. I'm looking to see some kind of change, possibly within a month.

Could you suggest anything (yes, while bearing in mind each organism reacts differently) ?
 

percyval577

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I am doing a low manganese diet since 2015,

with first a good succes but then a relapse (though lasting sleep improvement),
and then only very slow success.

Since 2016 I am searching for additional influences, only this year I managed to find quite some.
I started the diet thinking to kill borrelia. It now seems that I have to deaal with the consequences of them.
 

Wishful

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What you suggest is hardly restrictive. To try to avoid food sensitivities I lived on white rice for I think it was 6 months. It avoided triggering my t-cells, but didn't solve anything else. Then, to avoid tryptophan, I lived on mostly cornstarch pancakes (no sugar, toppings etc) for a year or two. I did take some vitamin supplements occasionally, but even that restrictive of a diet didn't cause any noticeable health problems...and didn't reduce my ME.

So, if you're looking for results in a month, try something highly refined, such as cornstarch, with no added vitamins, minerals, etc.

BTW, cornstarch pancakes made with cold water are really boring. Mixing with boiling water creates a better texture.
 

BeADocToGoTo1

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With heavy antibiotics use, your microbiome just got a massive hit. It takes time for it to rebuild. Eating real food with live cultures might be something to look into. Yoghurt (plain grass fed, organic, whole) with live cultures. Be sure to take a lactaid pill if you are sensitive to lactose. Fermented veggies like sauerkraut, kimchi, etc. Perhaps look into a high quality probiotic. Add some prebiotics along with the probiotics.

Do you have a slowcooker, as you can make a batch of soup with bone broth and few veggies, a potato, a bit of wild rice, healthy meat of choice. Digesting raw veggies can be tough, so slow cooking might be more easily digestible. I lived off soup for many, many months as that was all I could tolerate at the time.

Of course limiting sugary, carby things is good, but it sounds like you are already doing that.

Perhaps eliminate grains for a few weeks, as that can cause issues like you mentioned too. Flaxseeds can cause issues.

Are you getting enough calories overall? Calculate what your body needs and track your macro nutrients to see where you are. Often when you cut out processed, packaged, carby food you are left with a calorie hole that needs to be filled with e.g. healthy fats and protein. What about adding some nuts or nutbutters to the diet?
 

Hopeful1976

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My advice would be to restrict all sugar, even in fruits. Also gluten (bacteria/yeasts/candida proliferate). Then, for the most part, eat everything else that you can to rebuild a varied microbiome. I eat all veg and meat, no dairy apart from a small amount of cheese, gluten free pasta, rice, potatoes. Some salads. I know I cannot eat eggs. I've found my allergic foods cause breathlessness and a general worse than crap feeling. Honestly, restricting too much will not cure your m.e - you need to keep as much as you can in your diet...
 

Wishful

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Honestly, restricting too much will not cure your m.e - you need to keep as much as you can in your diet...
I agree that it's very unlikely to cure ME. It could, however, reveal some foods that make the symptoms worse. If you have coffee with milk, and wheat every day, how can you know whether one of those things makes you feel worse? I think a restrictive diet can be useful for identifying problem foods. It's even useful to retry a restrictive diet once in a while, since our sensitivities to foods and other things do change over time.

A varied and complex diet might be healthier in general than a simple unvaried one for a healthy person, but not for us if it's making ME symptoms worse. We can tolerate simple or even nutritionally poor diets for quite a while without noticeable problems from it. Identifying problem foods seems worthwhile.

Coming off heavy antibiotics, it might be better to try to rebuild your microbiome first, and leave the restrictive diet for after you've stabilized.
 

borko2100

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What worked for me when I had severe gastrointestinal issues was a diet of only vegetable milk, breakfast cereal (cornflakes), rice cakes and peanut butter.

Rice and corn seem pretty safe foods IMO. Even though, some people claim to have corn allergies. Rice allergy on the other hand? Never heard of that. So, maybe rice cereal and some form of vegetable milk? Or just plain cooked rice with some oil?

Bear in mind, you can't sustain this for too long though. If you do it for longer than 2 weeks, you NEED a multivitamin supplement.

As I said, it worked for me, but might not work for u obviously.
 

Hopeful1976

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I agree that it's very unlikely to cure ME. It could, however, reveal some foods that make the symptoms worse. If you have coffee with milk, and wheat every day, how can you know whether one of those things makes you feel worse? I think a restrictive diet can be useful for identifying problem foods. It's even useful to retry a restrictive diet once in a while, since our sensitivities to foods and other things do change over time.

A varied and complex diet might be healthier in general than a simple unvaried one for a healthy person, but not for us if it's making ME symptoms worse. We can tolerate simple or even nutritionally poor diets for quite a while without noticeable problems from it. Identifying problem foods seems worthwhile.

Coming off heavy antibiotics, it might be better to try to rebuild your microbiome first, and leave the restrictive diet for after you've stabilized.
I have had m.e many many years and have a very gut centred type. I have used very restrictive diets and none have helped me. Restrictive yes, very restrictive no.
 
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Thanks for the replies. Always more interesting to read live inputs than cold unanimated raw info from some "professional source "online.

I identify with just about every post on here, except the ones about corn and rice or pancakes. I WISH that was the solution to my problem but I know for sure it isn't. They say the proof is in the pudding, well, I've got a slightly less eloquent turn to that phrase: the proof is in the poop(ing). If I eat something and feel gassy, slightly bloated, fuller than I should, and then the stool looks mushy and the session on the toilet is an unpleasant one, that's what I've been eating the past 2-3 days. Cut it out. That's how I know any form of bread, all grains, all sugars, alcohol, are not friends with my gut. Then again, very few items are. It's antisocial like that. The bastard. Anyways so that's how I know a food is a 'yes yes' or a 'no no'. It takes around 3 weeks for the body to fully evacuate all traces of a food they say. One should see a form of change around a month later. Not actual 'improvement' per se, just certain modifications in your body's behavior perhaps.

I should mention even during the 5 months of intensive Abiotic intake, I was on powerful probiotics and regularly had sauerkraut (bacteria rich). I'm also waiting on my kombucha culture to finally pick up so I can have some k tea. Anyone have magical success stories about that ?
 

Wishful

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Bear in mind, you can't sustain this for too long though. If you do it for longer than 2 weeks, you NEED a multivitamin supplement.
I did more restrictive for longer, without noticing and problems from nutritional deficiency. Vitamin marketers try to convince people that they'll suffer horribly if they don't get their RDA every single day...but actually the human body stores many (most?) nutrients for significant periods of time. I read that VitA deficiency in Africa is treated by supplements taken twice a year. Human before bottled vitamins managed to survive (and multiply).

I can't take multivitamins, since niacin makes my symptoms worse and causes suicidal thoughts. I'm not recommending avoiding nutritional supplements, but I find that nutritional deficiency isn't quite as fast and dramatic a problem as supplement marketers want us to believe.
 

borko2100

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I did more restrictive for longer, without noticing and problems from nutritional deficiency. Vitamin marketers try to convince people that they'll suffer horribly if they don't get their RDA every single day...but actually the human body stores many (most?) nutrients for significant periods of time. I read that VitA deficiency in Africa is treated by supplements taken twice a year. Human before bottled vitamins managed to survive (and multiply).

I can't take multivitamins, since niacin makes my symptoms worse and causes suicidal thoughts. I'm not recommending avoiding nutritional supplements, but I find that nutritional deficiency isn't quite as fast and dramatic a problem as supplement marketers want us to believe.
Yes. I know. I've heard the stories. People living for months or years on extremely limited diets. Sometimes even starving. Better safe than sorry though. Especially, if you already suffer from a deficiency from something. A few weeks of not eating a thing you are already deficient in, might be all it takes for things to start getting serious.
 

BeADocToGoTo1

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...the proof is in the poop(ing). If I eat something and feel gassy, slightly bloated, fuller than I should, and then the stool looks mushy and the session on the toilet is an unpleasant one, that's what I've been eating the past 2-3 days. ...
Hi @Jo86

I did not want to bring this up on the first post to you, however, now I will. :) Most doctors spend zero time looking at all the inputs (food, drink, meds, supps) nor at the outputs (urine, stool). Especially your 'mushy' comment resonates.

If you have fatty stools (yellower, sticks to the bowl, smellier) that is not something to take lightly and indicates you are not breaking down food properly, in particular fat. This can be gallbladder related with inadequate bile salts being produced and delivered and/or exocrine pancreatic insufficiency (EPI), where you are not producing or delivering enough pancreatic enzymes to break down food. This causes nutrient deficiencies, dysbiosis and slowly breaks down the body.

Many doctors have no real experience with how to properly test and treat someone with exocrine pancreatic insufficiency and all the subsequent nasty snowball health effects.

Please have a look at the following thread for EPI (and SIBO, Candida):

https://forums.phoenixrising.me/thr...y-epi-and-chronic-fatigue-syndrome-cfs.62997/
 

BeADocToGoTo1

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Hi @Jo86

To continue the above, a few things to consider:

1.EPI or Exocrine Pancreatic Insufficiency Considerations:
  • PERT. Some doctors will prescribe pancreatic enzyme replacement pills like Creon to see whether your symptoms go down. You can also buy over the counter ones, but they will be unregulated in terms of strength. Better than nothing though, and they will help you break down food.
  • Stool test: fecal fat level and distribution (checks if you have issues with different types of fat intake and digestion). A 24 hour collection test is pretty standard.
  • Stool test pancreatic elastase
  • Blood test fasting trypsin (to see if you produce enough enzyme for protein breakdown)
  • Comprehensive Stool test for parasites, pathogenes, dysbiosis. E.g. GenovaGenova Diagnostics - Comprehensive Digestive Stool Analysis 2.0 with Parasitology (microbiome dysbiosis indicators), Fecal Fat Distribution (checks if you have issues with different types of fat intake and digestion), Elastase (for EPI, pancreas enzyme marker)and Chymotrypsin (for EPI, pancreas enzyme marker). Doctor's Data has similar tests.
  • Stool test chymotrypsin (similar to, but not as accurate as elastase)
2. Stomach acid: Is your pH low enough to start digesting food? If it is too high this will exacerbate any SIBO, candida overgrowths, and malabsorption. Are you taking antacids or PPI? Have you tried the simple selftest

A simple unscientific test to approximate acid level is by drinking a quarter teaspoon of baking soda (sodium bicarbonate) mixed in a glass of water on an empty stomach in the morning. This creates bubbles within two to three minutes when mixed with the hydrochloric acid in your stomach. If after five minutes nothing happens, there is a very good chance the pH of your stomach acid is too high (i.e., low stomach acid).

3. Intestinal permeability

Intestinal permeability (a.k.a. leaky gut) is something that your Gastro can also test for. The one I did was:

Cyrex Laboratories - Intestinal Antigenic Permeability Screen

It measures intestinal permeability to large molecules, which can cause autoimmune reactions, inflammation, food sensitivities, malabsorption, etc.

4. Gallbladder function. Yet another element that is important in breaking down food and thus any gallbladder issues can cause malabsorption.

5. SIBO and Candida overgrowth. With SIBO, both methane and hydrogen ones should be tested and tackled. Multi-pronged approach is needed as just antibiotics is not enough. A breath test for SIBO and something such as Genova FMV or Great Plains Lab Organic Acid Test (OAT) can be helpful here.
 
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You really need to find what works for you. I know a lot of people who thrive on paleo (it made me bloated and sluggish - there is a lot of kimchi and sauerkraut involved and my gut hated it!) I did a seven day bone broth cleanse before I went vegan and gluten free. I never felt better in my life in terms of clarity and energy. I go to the bathroom after every meal now.

I think unprocessed and sugar free, low inflammation foods are best for CFS/ME rather than just “one diet”. Anything that causes less inflammation and digestive stress and I know red meat makes the gut take a huge hit!! I find a lot of proteins makes me feel worse.
 

Judee

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Since everyone is different I think it is better to listen to what your body is telling you as you eat things. If you feel ill after eating something avoid it for a while and then retest.

Also listen to cravings too. I always heard that you're body craves what you need but then I found out about allergy addictions and began to think cravings were bad but now I'm back to thinking most cravings are really your body telling you it needs something in that food. The exception being if you crave a food and also feel ill after eating it. Then it probably is an allergy addiction.

Anyway, that has been the best way I've found for dealing with diet. Plus, even our own bodies will go through stages where it needs something now but doesn't want it later. For instance, sometimes, I can't stand the thought of chocolate and other times, I know my body is needing it and taking some makes me feel better.

As @Wishful said though, don't count on dietary changes to take away the ME/CFS. I've been doing this for about 40 years now and though diet makes the other symptoms (I call them the straws that break the camel's back) better it has never done anything to improve the fatigue or PEM.
 
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Thanks for the replies guys, I appreciate reading those.

About listening to the body and seeing what works and doesn't. It's ambiguous. You'd think your body would tell you outright what it NEEDS and what it can't handle, but the signs are blurry. It's difficult to know for sure one food is being harmful to you. In some cases it's obvious, in other cases it's subtle. And hard to pick up on. That's exactly why I'm trying the most basic diet possible, to then build back up if I can with other items. But like, it seems somewhat established that meat and good fats are a good minimal platform to start on - how do you know for sure the meat is helping ? Like I basically feel bad during/right after eating anything, like my body overworks and renders me sluggish. It seems quantity - a small quantity at a time of 'basic food' (meat, lettuce, avocado...) - is as important as what it is I'm eating.

Reactions to harmful foods will vary: sometimes it's immediate, and then seen again with the stool (constipation or runny) so those are the obvious ones. With others, the symptoms might appear later, during the day or even over the next few days. The body spends that time trying to adjust, making it hard to know for sure.
 

Wishful

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Yes, some foods provide fast unequivocal responses. Others might have a definite response, but with a several day delay, making it hard to figure out what caused it. Others produce a minor response, making it hard to be sure if it's real. Then there are combinations: this food and that food, or this food at this time of day, or that food and this sort of activity. Those are hard to pin down, and we just have to do the best we can. If you're suspicious of a food, you can try to minimize other variables in your day, and keep a careful journal including more details than usual. Repeat the experiment (with breaks) until you're satisfied with the reliability of the result.

To make matters even more complicated, our sensitivities can change, so what was safe isn't anymore, and some of the foods we put on our 'avoid' list become safe again...and we don't know that because we keep avoiding it.
 
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Yes, some foods provide fast unequivocal responses. Others might have a definite response, but with a several day delay, making it hard to figure out what caused it. Others produce a minor response, making it hard to be sure if it's real. Then there are combinations: this food and that food, or this food at this time of day, or that food and this sort of activity. Those are hard to pin down, and we just have to do the best we can. If you're suspicious of a food, you can try to minimize other variables in your day, and keep a careful journal including more details than usual. Repeat the experiment (with breaks) until you're satisfied with the reliability of the result.

To make matters even more complicated, our sensitivities can change, so what was safe isn't anymore, and some of the foods we put on our 'avoid' list become safe again...and we don't know that because we keep avoiding it.
Right, exactly. I've gone progressively more and more sensitive overtime to different foods. Like it seems impossible today, but about 6 years ago I was deep into the chronic fatigue already but could eat a bunch of white bread and not feel that affected. The intolerance symptoms grow worse overtime.

The problem with keeping a journal for me is food isn't the only thing affecting my state. Sleep would probably be the major contributor. And that varries quite a bit for me. So if I kept a journal, I'd look back at the past month's pages and find I felt alright while on good foods, but the next week started feeling bad while on the same foods.
I honestly think unfortunately the only efficient way is the purely empirical way: go a whole 2-3 months without one specific food, then another specific food...so on.
The body only reacts to drastic changes, cutting out COMPLETELY one thing for a lengthy period. It's always interesting to read what triggered an improvement in particular individuals.
 
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If you suspect food reaction, rotation was great ( I do Keto myself w a mix of rotation)
How has that worked out for you ? I mean I'm eliminating all classic food offenders, NO gluten dairy grains nuts etc... even cut out all vegetables since I've had them the whole time and they might be the cause (who knows) so basically just proteins and sweet potatoes/avocados/coco products/lettuce and dark chocolate - and I'm STILL feeling worse every day. How long after trying the diet would you feel changes ?