Severe Constipation and Dysbiosis?

[Susana]

My son, who is in his 40s and has been ill with severe ME since the age of 21 and also suffers from chronic vertigo and tinnitus, decided to go on Doctor Myhill’s low-carb Paleo diet in April. Within a week he became constipated, with impaction, and continues to be so, despite taking all kinds of laxatives, linseed, psyllium husk, (which made him worse) recommended by GPs and gastroenterologists.
I am wondering if the severe constipation might be influenced by dysbiosis of the gut, as this is a problem for some people with ME. Has anybody experienced this, and what are your thoughts about dysbiosis? I have found research by Professor Maureen Hanson about this condition and have printed it out to show the new consultant my son is seeing this evening, hoping this might prove useful. Thank you so much.

 

[Not dead yet!]

My son, who is in his 40s and has been ill with severe ME since the age of 21 and also suffers from chronic vertigo and tinnitus, decided to go on Doctor Myhill’s low-carb Paleo diet in April. Within a week he became constipated, with impaction, and continues to be so, despite taking all kinds of laxatives, linseed, psyllium husk, (which made him worse) recommended by GPs and gastroenterologists.
I am wondering if the severe constipation might be influenced by dysbiosis of the gut, as this is a problem for some people with ME. Has anybody experienced this, and what are your thoughts about dysbiosis? I have found research by Professor Maureen Hanson about this condition and have printed it out to show the new consultant my son is seeing this evening, hoping this might prove useful. Thank you so much.

Do NOT give him fiber to get him unconstipated! I suffer from severe constipation and this is a total myth. Psyllium is instant impaction for me.

Go out to a pharmacy or even the pharmacy section of walmart, and find the bottles (around $3) of magnesium citrate. This is a different strength from the supplement ones. It's used after pregnancy or surgery when a person's system is fully impacted. Also get him some Senokot. Buy three bottles at least of the liquid.

On day 1 in the morning, as early as possible, have him drink the entire bottle. Then a 16 ounce glass of water. And only after all that, to take 3-5 pills of Senokot. I take 5 because my gut can get literally paralyzed.

If he only takes Senokot (senna), he will have agonizing cramps. This process, with the magnesium, the water and the senna... will result is urgent diarrhea that will last all day.

But it will all get out. He should eat very sparingly, and if possible should put off eating until the evening meal.

If needed, have him repeat it next week.

I did this every week for years until I figured out why it was happening to me.

In my case it was definitely dysbiosis, but it was caused by my immune system attacking my gut, it was Celiac disease. Have him tested for that. You don't need a doctor's order to get that test, in the US.

The medical community is so uptight about constipation because young women use laxatives to lose weight. But it means the rest of us get no medical care when it's needed.

This process works for me, but maybe Milk of Magnesia will work ok for him. He may need to experiment.

Another thing that works is to pretend you're going for a colonoscopy and you're doing the "prep" for it. Here's some instructions from a hospital for that:http://medicine.med.miami.edu/documents/gastro/Colonoscopy_Prep_Brochure_v7_FINAL1.pdf

Permanent Link: https://web.archive.org/web/2019081...astro/Colonoscopy_Prep_Brochure_v7_FINAL1.pdf

It was actually a prep for a colonoscopy that made me realize there's a lot of BS in the advice to eat more fiber. Otherwise they'd tell you to eat more fiber before a colonoscopy, I mean if it made you go faster.

 

[Susana]

Do NOT give him fiber to get him unconstipated! I suffer from severe constipation and this is a total myth. Psyllium is instant impaction for me.

Go out to a pharmacy or even the pharmacy section of walmart, and find the bottles (around $3) of magnesium citrate. This is a different strength from the supplement ones. It's used after pregnancy or surgery when a person's system is fully impacted. Also get him some Senokot. Buy three bottles at least of the liquid.

On day 1 in the morning, as early as possible, have him drink the entire bottle. Then a 16 ounce glass of water. And only after all that, to take 3-5 pills of Senokot. I take 5 because my gut can get literally paralyzed.

If he only takes Senokot (senna), he will have agonizing cramps. This process, with the magnesium, the water and the senna... will result is urgent diarrhea that will last all day.

But it will all get out. He should eat very sparingly, and if possible should put off eating until the evening meal.

If needed, have him repeat it next week.

I did this every week for years until I figured out why it was happening to me.

In my case it was definitely dysbiosis, but it was caused by my immune system attacking my gut, it was Celiac disease. Have him tested for that. You don't need a doctor's order to get that test, in the US.

The medical community is so uptight about constipation because young women use laxatives to lose weight. But it means the rest of us get no medical care when it's needed.

This process works for me, but maybe Milk of Magnesia will work ok for him. He may need to experiment.

Another thing that works is to pretend you're going for a colonoscopy and you're doing the "prep" for it. Here's some instructions from a hospital for that:http://medicine.med.miami.edu/documents/gastro/Colonoscopy_Prep_Brochure_v7_FINAL1.pdf

Permanent Link: https://web.archive.org/web/2019081...astro/Colonoscopy_Prep_Brochure_v7_FINAL1.pdf

It was actually a prep for a colonoscopy that made me realize there's a lot of BS in the advice to eat more fiber. Otherwise they'd tell you to eat more fiber before a colonoscopy, I mean if it made you go faster.

Thank you very much for this advice. We're looking to see if we can buy magnesium citrate in England. If we can and it works, I'll write and tell you. But I'm grateful that you took the time to reply!

 

[Susana]

Many thanks for this long post. I'm getting used to this forum so I may have posted a thanks already but two does no harm! we shall look into this and see where we can buy it in the UK. People are reluctant to talk about constipation but it's a part, an essential activity of the body, and we shouldn't be so squeamish, I think.
Thank you again! Susana

 

[dejurgen]

I am wondering if the severe constipation might be influenced by dysbiosis of the gut, as this is a problem for some people with ME. Has anybody experienced this, and what are your thoughts about dysbiosis?

Please see my comment on https://www.healthrising.org/forums/threads/fructose-malabsorption.3968/#post-35425 on my ideas on the relationship between fructose malabsorption, FODMAP intolerance, gut dysbiosis and constipation.

I likely have inherited fructose malabsorption from my parents and have it for all of my life. But over time it caused more and more troubles.

I had so much food intolerances I was unaware of being intolerant to any food at all. Just leaving a few foods out off my diet didn't help enough to notice any clear difference. A single food intolerance is hard to track and detect. Being intolerant to over half of what you eat is very very difficult to detect or at least it was for me and I have keen senses.

After gradually reducing eating food I am intolerant too, I improved considerably. When I now trigger my fructose intolerance badly, it is as if I am drenched in a bad with toxic chemicals causing massive up-flaring of pain, exhaustion, strong feelings of depression, nausea... after about half a day. That's the time it seems to need to cause an explosive growth of bad bacteria that assault my gut and gut blood vessels I believe.

 

[dejurgen]

In the other thread you'll see I am one of the few patients who have a alternating constipation / diarrhea after triggering my fructose / FODMAP intolerances. That left me puzzled for quite a long time. Now I believe to have found a reasonable explanation for it. For sensitive people, it may become a bit too graphic of how the gut works .

I believe the gut must be ready to keep a balance between nurturing good bacteria and fighting of bad bacteria. Plenty of these bad bacteria can be new bacteria the gut has no experience with. Sending in massive amounts of white blood cells in the gut to try and fight only the bad bacteria while leaving the good ones intact seems both very difficult and a very expensive thing to do. So what would be a "cheaper" option?

When there are too many bad bacteria in the food: reduce the time the food is in the bowel a lot. That both reduces both how much time the bacteria had to multiply (and hence there number) and the time they have to cause havoc. In plain words: leave water and fat in the food content and cause bowel spams to get everything out: diarrhea!

But there is another option. Think of melting wet snow. Now imagine having a fine metal horizontal placed grid (like a fine grid sieve). Now imagine to put a blob of this wet snow on the right hand side of the sieve and pushing the snow over it to the left hand side of the sieve. Plenty of wet snow will fall through the small grid as wet snow adjust shape and easily flows through the holes.

Now that is the equivalent of having diarrhea and a leaky gut. There may be few time to develop vast amounts of bacteria in the digesting food, but there will be some. Push undigested food will push undigested proteins and some bacteria through the leaky gut wall. When undigested proteins get trough the gut wall, a massive immune reaction will be mounted against them. Undigested proteins do NOT belong in the blood and are attacked actively by the immune system. Only proteins broken down to amino acids are allowed in the blood. The proteins the body produces itself are marked with a special marker when they are put into the bloodstream so that the immune system recognizes them to be made by the body and to be OK.

So diarrhea is not a perfect solution when trying to get around gut dysbiosis.

Now imagine to have dry snow, the prime quality to make a big snowman. Rather then picking up some wet snow with a shovel, you now role a big and firm sphere of snow. You put it on the right hand side of the sieve. You now push it over the sieve so that it rolls over the sieve. You'll see that few snow falls through the sieve.

That is how I think constipation tries to get around the problem of dysbiosis. You drain water from the food. Bacteria tend to grow and spread better in a wet environment. So there growth rate is reduced. They are "stuck" to a certain confined place in a dry ball of food. When moving these dry balls of food, they roll over the leaky gut. Most dry undigested food and bacteria stay stuck in the ball, so less of it passes through the leaky gut.

This strategy isn't perfect either. The food stays in much longer and it requires plenty of mechanical and painful action to get them out of the body. Chances are that you push so hard that you cause damage to part of the gut.

So yes, in my believe gut dysbiosis can cause both diarrhea and constipation.

 

[dejurgen]

I have two things that work fairly well with me, but they sure won't work fore anyone!

The first one I discovered is eating a piece of fresh papaya with (before) every single (protein containing) meal. About 100 grams a day spread over the meals does the job for me.

It has good digestive enzymes that break down proteins. It is one of the few that start working from the moment they are in the gut. Most others are deactivated so that they would not damage the stomachs wall. I can't guarantee that these enzymes can't damage the stomach wall. But fresh papaya is eaten as a fruit in much larger quantities so it is relatively safe-ish *for most healthy people*. Other comparable enzymes are found in grapefruit, but these tend to interact more with conventional drugs. Either choice you make, consult on safety with your doctor first.

It gave me a good improvement in health within one to two weeks. I won't say it will improve constipation directly, but improved health in ME is a bonus to start with. And improved digestion is often good.

I have written on the topic in Healthrisings forum before this and I must admit no one reported similar good results as I had. But due to now writing these comments I may see what makes it work with me: I am one of the rare ME / gut dysbiosis patients that also has constipation problems. In the previous comment I wrote that one of the disadvantages of diarrhea to get food out of the body is that you risk to get more undigested proteins in your blood. So the body may turn to constipation to prevent that. Using this fruit helping with protein digestion starting already in the stomach would reduce the amount of undigested protein in the bowel. With it, it would reduce the need to resort to the mechanism of constipation rather then diarrhea for countering gut dysbiosis problems. That is, there would be less undigested proteins that can enter the bloodstream during a diarrhea reaction. Note this is an untested hypothesis!

By any chance, would "Doctor Myhill’s low-carb Paleo diet" be high in protein? There are two commonly used types of paleo diets: one with much protein and another type with limited protein only. Both have different advantageous and disadvantageous.

Another thing that helps me is psyllium husk. Yes, I know it made him worse and I respect Not Dead Yet! her experiences. But know that most psyllium husk sold contains more then that alone. Very often it has plenty of added fiber or pre-biotics. That is a clear no-no in my case! And pro-biotics are bad for me too. So check labels!

Also, my psyllium husk is packed in stomach acid resistant capsules. That makes it a lot more expensive. But psyllium husk is closely related to cellulose. Cellulose can irritate the stomach and cause mast cell degranulation. That is a common problem with ME patients and makes them worse. The tomach acid resistant capsules prevent that. They are more expensive, but taking 4 capsules (as indicated maximum on the label) with in total 1500 mg only a day does a fine job for me. That is much lower then the amount typically taken with the powder containing also pre-biotics. Sure it is no miracle cure but it helps slowly improve my gut. The effect of it is far more something building up over time then the quick papaya effect.

For people on a low-carb diet fresh papaya may contain a bit too much sugar. It contains some fructose too but for me the benefits outweigh the disadvantageous. You can also take papaine supplements, but for me the fresh fruit is superior.

Now how do I believe psyllium husk works? Psyllium husk is indigestible fiber. Many say the main difference between certain fibers is them being solvable or non-solvable. I place more importance on the difference between digestible versus indigestible fiber. The reason?

Bacteria tend to like to stick to surfaces. So I provide them surface area in the form of indigestible very fine grind (dust like) psyllium husk. The finer the grinding, the more surface area per gram. I like bad bacteria stick to psyllium husk a lot more then to stick to my gut wall and slip through it. There they can grow on the food they find and stay there. And then enjoy their ride on the way out without bothering my gut wall. That's why I believe *indigestible* to be important here. If the bacteria manage to eat all of the fiber they stick too, they'll have no surface left to stick too and release themselves and spread. I don't want that.

Other fine grind indigestible fiber may work just as well. I have no experience with it.

I also decide to take "advantage" of having constipation. Many doctors recommend high doses of oral vitamin C for ME patients. But oral dosing is limited as it tends to cause diarrhea by killing of gut bacteria. Therefore some doctors inject patients with vitamin C to get their patients high doses. It doesn't help much with constipation, but I have few problems with taking high doses of vitamin C . And when drinking water with vitamin C before a meal, the stomach becomes more acid improving digestion. Many ME patients have too few stomach acid. Producing stomach acid costs energy. After the meal I drink less water. I already drank water before the meal to hydrate. And water after the meal dilutes stomach acid reducing digestion once more. I just drink enough after a meal to rinse my mouth and throat.

If you have any changes or experiences to share, please do.

 

[Tracey Anne]

Hi, I have always had constipation until recently when I started taking psyllium husks. I buy it loose from the health food shop. It absolutely has to be mixed with water as there is a choking hazard if you don't. I mix one teaspoon with a cup of water and drink it.

I do also take Viridian's Magnesium capsules 300mg, Digestive Aids, Multiphytonutrients, Omega 3, CoEnzyme Q10, Biokult probiotics and Macushield. I also eat loads of kale and spinach, some protein - unprocessed meat, eggs, beef liver, sunflower seeds, black coffee, Roibos tea, olive oil, some mackerel and tuna.

Dairy constipates me immediately and I have a massive problem with fructose.

Tracey Anne

 

[Tracey Anne]

I also take Vit C 550 mg and sprinkle Tumeric and Ginger on my food.

I am intolerant to most food and I am delighted to have found that I can eat these foods without a reaction.

Tracey Anne

 

[Susana]

Dear Tracey Anne
Many thanks for replying to my question, and I'm glad you've found the right things to help your health.
Magnesium might be what my son needs but he has to be very careful what supplements he takes as these also cause problems. We'll give it a try!
Everyone is very kind on this forum. Thanks again,
Best wishes
Susana

 

[Susana]

I have two things that work fairly well with me, but they sure won't work fore anyone!

The first one I discovered is eating a piece of fresh papaya with (before) every single (protein containing) meal. About 100 grams a day spread over the meals does the job for me.

It has good digestive enzymes that break down proteins. It is one of the few that start working from the moment they are in the gut. Most others are deactivated so that they would not damage the stomachs wall. I can't guarantee that these enzymes can't damage the stomach wall. But fresh papaya is eaten as a fruit in much larger quantities so it is relatively safe-ish *for most healthy people*. Other comparable enzymes are found in grapefruit, but these tend to interact more with conventional drugs. Either choice you make, consult on safety with your doctor first.

It gave me a good improvement in health within one to two weeks. I won't say it will improve constipation directly, but improved health in ME is a bonus to start with. And improved digestion is often good.

I have written on the topic in Healthrisings forum before this and I must admit no one reported similar good results as I had. But due to now writing these comments I may see what makes it work with me: I am one of the rare ME / gut dysbiosis patients that also has constipation problems. In the previous comment I wrote that one of the disadvantages of diarrhea to get food out of the body is that you risk to get more undigested proteins in your blood. So the body may turn to constipation to prevent that. Using this fruit helping with protein digestion starting already in the stomach would reduce the amount of undigested protein in the bowel. With it, it would reduce the need to resort to the mechanism of constipation rather then diarrhea for countering gut dysbiosis problems. That is, there would be less undigested proteins that can enter the bloodstream during a diarrhea reaction. Note this is an untested hypothesis!

By any chance, would "Doctor Myhill’s low-carb Paleo diet" be high in protein? There are two commonly used types of paleo diets: one with much protein and another type with limited protein only. Both have different advantageous and disadvantageous.

Another thing that helps me is psyllium husk. Yes, I know it made him worse and I respect Not Dead Yet! her experiences. But know that most psyllium husk sold contains more then that alone. Very often it has plenty of added fiber or pre-biotics. That is a clear no-no in my case! And pro-biotics are bad for me too. So check labels!

Also, my psyllium husk is packed in stomach acid resistant capsules. That makes it a lot more expensive. But psyllium husk is closely related to cellulose. Cellulose can irritate the stomach and cause mast cell degranulation. That is a common problem with ME patients and makes them worse. The tomach acid resistant capsules prevent that. They are more expensive, but taking 4 capsules (as indicated maximum on the label) with in total 1500 mg only a day does a fine job for me. That is much lower then the amount typically taken with the powder containing also pre-biotics. Sure it is no miracle cure but it helps slowly improve my gut. The effect of it is far more something building up over time then the quick papaya effect.

For people on a low-carb diet fresh papaya may contain a bit too much sugar. It contains some fructose too but for me the benefits outweigh the disadvantageous. You can also take papaine supplements, but for me the fresh fruit is superior.

Now how do I believe psyllium husk works? Psyllium husk is indigestible fiber. Many say the main difference between certain fibers is them being solvable or non-solvable. I place more importance on the difference between digestible versus indigestible fiber. The reason?

Bacteria tend to like to stick to surfaces. So I provide them surface area in the form of indigestible very fine grind (dust like) psyllium husk. The finer the grinding, the more surface area per gram. I like bad bacteria stick to psyllium husk a lot more then to stick to my gut wall and slip through it. There they can grow on the food they find and stay there. And then enjoy their ride on the way out without bothering my gut wall. That's why I believe *indigestible* to be important here. If the bacteria manage to eat all of the fiber they stick too, they'll have no surface left to stick too and release themselves and spread. I don't want that.

Other fine grind indigestible fiber may work just as well. I have no experience with it.

I also decide to take "advantage" of having constipation. Many doctors recommend high doses of oral vitamin C for ME patients. But oral dosing is limited as it tends to cause diarrhea by killing of gut bacteria. Therefore some doctors inject patients with vitamin C to get their patients high doses. It doesn't help much with constipation, but I have few problems with taking high doses of vitamin C . And when drinking water with vitamin C before a meal, the stomach becomes more acid improving digestion. Many ME patients have too few stomach acid. Producing stomach acid costs energy. After the meal I drink less water. I already drank water before the meal to hydrate. And water after the meal dilutes stomach acid reducing digestion once more. I just drink enough after a meal to rinse my mouth and throat.

If you have any changes or experiences to share, please do.

I have two things that work fairly well with me, but they sure won't work fore anyone!

The first one I discovered is eating a piece of fresh papaya with (before) every single (protein containing) meal. About 100 grams a day spread over the meals does the job for me.

It has good digestive enzymes that break down proteins. It is one of the few that start working from the moment they are in the gut. Most others are deactivated so that they would not damage the stomachs wall. I can't guarantee that these enzymes can't damage the stomach wall. But fresh papaya is eaten as a fruit in much larger quantities so it is relatively safe-ish *for most healthy people*. Other comparable enzymes are found in grapefruit, but these tend to interact more with conventional drugs. Either choice you make, consult on safety with your doctor first.

It gave me a good improvement in health within one to two weeks. I won't say it will improve constipation directly, but improved health in ME is a bonus to start with. And improved digestion is often good.

I have written on the topic in Healthrisings forum before this and I must admit no one reported similar good results as I had. But due to now writing these comments I may see what makes it work with me: I am one of the rare ME / gut dysbiosis patients that also has constipation problems. In the previous comment I wrote that one of the disadvantages of diarrhea to get food out of the body is that you risk to get more undigested proteins in your blood. So the body may turn to constipation to prevent that. Using this fruit helping with protein digestion starting already in the stomach would reduce the amount of undigested protein in the bowel. With it, it would reduce the need to resort to the mechanism of constipation rather then diarrhea for countering gut dysbiosis problems. That is, there would be less undigested proteins that can enter the bloodstream during a diarrhea reaction. Note this is an untested hypothesis!

By any chance, would "Doctor Myhill’s low-carb Paleo diet" be high in protein? There are two commonly used types of paleo diets: one with much protein and another type with limited protein only. Both have different advantageous and disadvantageous.

Another thing that helps me is psyllium husk. Yes, I know it made him worse and I respect Not Dead Yet! her experiences. But know that most psyllium husk sold contains more then that alone. Very often it has plenty of added fiber or pre-biotics. That is a clear no-no in my case! And pro-biotics are bad for me too. So check labels!

Also, my psyllium husk is packed in stomach acid resistant capsules. That makes it a lot more expensive. But psyllium husk is closely related to cellulose. Cellulose can irritate the stomach and cause mast cell degranulation. That is a common problem with ME patients and makes them worse. The tomach acid resistant capsules prevent that. They are more expensive, but taking 4 capsules (as indicated maximum on the label) with in total 1500 mg only a day does a fine job for me. That is much lower then the amount typically taken with the powder containing also pre-biotics. Sure it is no miracle cure but it helps slowly improve my gut. The effect of it is far more something building up over time then the quick papaya effect.

For people on a low-carb diet fresh papaya may contain a bit too much sugar. It contains some fructose too but for me the benefits outweigh the disadvantageous. You can also take papaine supplements, but for me the fresh fruit is superior.

Now how do I believe psyllium husk works? Psyllium husk is indigestible fiber. Many say the main difference between certain fibers is them being solvable or non-solvable. I place more importance on the difference between digestible versus indigestible fiber. The reason?

Bacteria tend to like to stick to surfaces. So I provide them surface area in the form of indigestible very fine grind (dust like) psyllium husk. The finer the grinding, the more surface area per gram. I like bad bacteria stick to psyllium husk a lot more then to stick to my gut wall and slip through it. There they can grow on the food they find and stay there. And then enjoy their ride on the way out without bothering my gut wall. That's why I believe *indigestible* to be important here. If the bacteria manage to eat all of the fiber they stick too, they'll have no surface left to stick too and release themselves and spread. I don't want that.

Other fine grind indigestible fiber may work just as well. I have no experience with it.

I also decide to take "advantage" of having constipation. Many doctors recommend high doses of oral vitamin C for ME patients. But oral dosing is limited as it tends to cause diarrhea by killing of gut bacteria. Therefore some doctors inject patients with vitamin C to get their patients high doses. It doesn't help much with constipation, but I have few problems with taking high doses of vitamin C . And when drinking water with vitamin C before a meal, the stomach becomes more acid improving digestion. Many ME patients have too few stomach acid. Producing stomach acid costs energy. After the meal I drink less water. I already drank water before the meal to hydrate. And water after the meal dilutes stomach acid reducing digestion once more. I just drink enough after a meal to rinse my mouth and throat.

If you have any changes or experiences to share, please do.

 

[Susana]

Hello
Thanks for this long complex reply to my question. Papaya is very interesting, and you offer many excellent suggestions for improving the health of someone with long term illness. As far as we could see Dr Myhill's low carb paleo diet is supposed to be high fibre, taking large amounts of seeds and linseed in various forms. We didn't know he needed to take these initially, as it wasn't clearly stated that all patients should follow this; his diet became high protein.

But this extreme constipation has continued for four months and might be caused now and originally by something else. It's currently a serious problem. I bought the psyllium husk in powder form from a health food shop by the way. Capsules seem better.

Anyway, I'll take note of all your generous suggestions.

Many, many thanks
Susana

 

[dejurgen]

Please note that not all capsules are stomach acid resistant. Some are mere packaging it to make it more convenient to use. Read labels or ask a pharmacist. If you've got powder, preferably without pre-biotics, you can let it repackage into stomach acid resistant capsules by a pharmacist for a fee.

Gut dysbiosis problems and things like diarrhea or constipation coming with it can last long after the initial trigger. After a period of leaving out little by little food I was unknowingly intolerant too, I once ate two small apples as a breakfast and nothing with it. Only since that day I understand how bad food intolerances can be...

The water in the toilet was dark red from blood with my stool. The following two weeks I had regularly blood with my stool. The following two months I had alternating severe diarrhea and constipation. It took six months till I hadn't one of them every single day. Now, a year later, stool is still not what it should but I can most of the time avoid either.

In that year I learned to avoid most food intolerances and found two helpful things to stabilize stool. Still it took this long to get it somewhat stable. Probably I would do better if I did a full elimination diet and learned to avoid all my food intolerances. Now I only leave out the about 50% of food that is clearly bad for me. If I eliminated all food I am somewhat intolerant too then I probably would only have 5 to 10% of foods left. As I need help from my mom with food preparing, this is the compromise we've made to make it a realistic task of preparing meals for me.

 

[Tracey Anne]

Hi Susana,

Yes, tread carefully. One thing that I found helped was having some pure glucose with a small meal. I think it helped because digesting food uses energy and if you have very little to spend then you can feel worse when you eat.

People have given me advice over the years and I just stayed with what I knew as I was too terrified of the reactions I had, to stray off my narrow ledge I was on.

Moving slightly off topic here - I have made huge progress in the last few months because I'm getting a better quality of sleep.

I was so intolerant to so much food, was absolutely exhausted, completely wired, isolated etc and was caught in this trap and going downhill. I'm on my own with my teenage son, with little money and no one believes I'm Ill. They think I have mental health problems, an eating disorder etc.

A few months ago I could only tolerate unprocessed meat, eggs and spinach and kale. I was terrified of losing weight as I couldn't eat enough.

In one of my late night trawls around the internet, I came across a video of an interview between Dan Neuffer (CFS Unravelled) and Brenten. You can find this on Recovery Stories CFS Unravelled.

I didn't really think I had ME/CFS but I watched the video and it managed to break through my exhaustion, brain fog and zero memory.

So, I decided despite my circumstances I just had to (even if I had to pretend things were ok) bring my chronic, stratospheric stress levels down.

I had actually got accustomed to being permanently wired. I was also eating chocolate to keep myself going but this was raising my blood pressure, heart rate and stress levels.

So, my one goal was to relax enough to get a better quality/deeper nights sleep. It was then I realised I couldn't even remember the last time I felt normally tired and yawned. I was permanently exhausted and dragging myself around, if I was able.

Anyway I managed it. I actually slept better and when I woke up I felt a little bit different, a little bit better, a bit more normal.

I thought ok I'll try a bit of olive oil - it was ok... In the last few years if I ate any oils, nuts, seeds I had immediate reactions - mouth ulcers and possibly ulcers down my throat.

So, for the past few months, I have been focussing on trying to regulate my circadian rhythm - getting up at the same time, going to bed at the same time, eating at the same time. I think my body had got in such a muddle as to what part of the day/night we were in.

I had an experience, last year I think, where I felt part of my brain wasn"t awake - it just wasn't functioning... Try telling that to someone!

I have been checked out by all sorts of specialties and nothing really shows up. So I'm left on my own to deal with it as best as I can.

I have only just found this website and I'm kind of overwhelmed. But you know it's very helpful to be able to discuss issues, rather than be living in exile.

I have read Dan Neuffer's book CFS Unravelled and I find his videos very good. I also have Dr Sarah Myhill's book which I will get back to. Personally I find watching videos easier.

There's a great website I found called Gary Burgess' Zonked Club. He has ME/CFS and works for ITV television station in the UK. He has some very interesting interviews on his podcast section

There's a very interesting two part BBC documentary called The Toxic Tiredness Part 1 and Part 2.

There's an interesting talk by a former NZ rugby captain Richie Barrett - Life with ME/CFS July 26 2015 University if Otago.

I just think being this ill and having no one believe me is absolutely terrifying, which put my stress levels up and just adds to the problem.

I am much better now but I feel a bit like I have PTSD from the trauma if the whole experience. I have fallen out with members of my family because they are very disrespectful and very unhelpful. I sort of live in this weird alternative world.

Anyway I think supporting each other is absolutely vital.

Best wishes to you and your son.

Tracey Anne

 

[Susana]

Thank you for this very kind and thoughtful message. It's wonderful that you've somehow found your way through this , alone with your son. I wonder where you are , in US or the UK. We are in Manchester in the north of England. II agree that it's so helpful to share problems like this.
My son finds much of the conversations online overwhelming or confusing; it's also good that you say 'tread carefully. After all these years I have slowed down on internet communication because it's sometimes/often made things worse. As with the Myhill protocol.
My son also went to the Breakspear Hospital for more than a year- alternative , v. expensive, and one of the minerals or vitamins had a devastating effect on his stomach, and the gastro-enterologist he sees suggested he stopped all the supplements.
I'm not a spring chicken so I usually prefer to read than to watch videos, but I can learn. Perhaps it's because i'm a writer and love the written word!
Thanks so much for your message.
All best wishes,
Susana

 

[Tracey Anne]

Hi Susana,

I live in Ireland now but grew up in the UK, near Salisbury, Wiltshire. My dad came from Weaverham, Cheshire.

I am feeling a bit better now and have more energy and my brain is actually functioning fairly well.

However, though my issues are mainly related to my digestion, food intolerances, off the scale stress and lack of restorative sleep, the part of my body most affected is my brain.

I have been unwell for 12 years. I didn't have so many food intolerances or so many problems in the beginning but I was far worse at dealing with it and I didn't want to give up the foods I loved like chocolate, biscuits, fruit etc

I did improve when I ditched the sugar but I would forget how Ill I became and so I'd regularly pay the price until I became worse and the consequences were more disastrous.

I think our bodies and minds are so complex and we take them for granted until they go wrong. I have the general belief that my body is doing it's best.

My thinking in my situation is that I am intolerant to the modern world: the processed food, the stress, the 24/7 culture etc. So I needed to go back to eating what my original template/ my ancestors would have eaten. My hope was that my body would recognise this and therefore not see it as a threat and so wouldn't react.

Over the last few years, as my energy dwindled, I found it very hard to tolerate people who dismissed me or my symptoms. It was as though they were stripping me of my last bits of energy.

This last Christmas, I couldn't write cards because I thought /felt that doing so would empty my tank and I'd be left with nothing. It was a very peculiar feeling. Like I was down to my very last drops of emotional energy.

I think we all fall through this sort of non-return valve for different reasons. I believe I have a genetic susceptibility (immune issues), had Glandular fever at 17, was under tremendous pressure and got the flu.

I think my problems are related to the immune systems 'sickness response' and my autonomic nervous system getting hijacked.

These systems are powerful, difficult to understand and bring back to normality.

It's trying to understand the problem before you can even attempt to address it. The body/mind under threat can be very reactive, with terrible consequences, especially when we're very vulnerable.

I found Dan Neuffer's book CFS Unravelled very interesting and it was him who helped me turn my health around. I don't know whether it would be relevant to you and your son but it might be worth a look.

Dan is a physicist, who was struck down when he had a vaccination for chickenpox. He researched himself, as he wasn't finding answers from the health professionals. He is sensible though, he always stresses to get checked out by doctors.

With warmest wishes,

Tracey Anne

 

[dejurgen]

One thing that I found helped was having some pure glucose with a small meal.

That does sound like fructose malabsorption. Fructose is better absorbed when there is at least an equal amount of glucose available. Fructose then is co-tranported with glucose, "getting a free rid". But even that mechanism seems to be limited in people with fructose malabsorption so it is no substitute for eating less fructose.

Hi, I have always had constipation until recently when I started taking psyllium husks

mouth ulcers and possibly ulcers down my throat

Mouth ulcers are https://en.wikipedia.org/wiki/Aphthous_stomatitis. It is strongly believed to a strong immune reaction to "something" that is unknown.
"The cause is not completely understood, but involves a T cell-mediated immune response triggered by a variety of factors."
"When early aphthous ulcers are biopsied, the histologic appearance shows a dense inflammatory infiltrate, 80% of which is made up of T cells."

For the 20% of people that has them, 3 to 6 times a year is normal. I had them every other day at worst. When I discovered that my rate was totally abnormal and that it was very likely an immune reaction, I started to search. There was no know cause, except that Sodium Lauryl Sulfate (SLS) that is a common ingredient in most toothpastes can make it worse. So I searched for other toothpast not having this ingredient.

The best explanation I did found was from an alternative website and it did make sense to me: the immune reaction underlying the aphtous ulcers is against undigested proteins slipping trough a leaky gut. That's why I tried the papaya approach as I knew it has good natural enzymes breaking protein down. The first effect was more energy. Then ulcer rate came slowly down to a few a month now.

The constipation thing *might* also be a small thing pointing towards undigested proteins crossing your gut barrier.

I believe a fructose malabsorption can be the cause of much of what you reported here and in the other threat. Not all people with fructose malabsorption have FODMAP intolerance too. I have both, but the fructose intolerance is the worst by a big margin.

 

[Tracey Anne]

Hi dejurgen,

Thanks. My gut's probably like a sieve! I tried to take glutamine once, to try and help heal my gut and my mouth went completely dry and my tongue was like a bit of driftwood from the sea ... I also nearly passed out, dropping like a stone. Luckily I 'came to' before I hit the concrete floor...

I don't eat any fructose now apart from the small bit in kale and spinach. This is because one of my new things is, if I eat any sugar; glucose on its own or glucose and fructose my vision goes blurry and my left eye feels like it's swelling up. My left eye is worse than my right.

A couple of weeks ago I thought I'd try a very small bar (40g) if chocolate and see what happened. I actually have trouble keeping my weight from falling - having been battling with my weight for years I still can't believe I'm writing that.

I thought I'd got away with it. However 24 hrs later I couldn't see the TV. I wiped my glasses, moved the TV closer but no, nothing worked. The next morning my left eye was puffy and weepy. My body noticed the chocolate
Thankfully it does clear and my vision improves again. I do have very puffy eyes in the morning and at night - not the best.

I don't have diabetes, though I do have problems with blood sugar balance.

The mouth ulcer info is interesting - thanks. Yeah well my immune system is hypervigilant!

I liked your post on the donations page. I honestly think the way people with ME/CFS are dismissively treated is a factor in worsening their condition.

My current doctor acknowledges I am very sensitive to things and I think he's beginning to realise something is going on but the huffing and puffing, the rolling of the eyes, the sarcasm etc I have had from other doctors is so demoralising and actually dangerous because there have been times I should have gone to see them but I haven't because I couldn't take their patronising attitude.

Anyway I"d better go. Don't eat apples!!

Tracey Anne

 

[Wayne]

I am wondering if the severe constipation might be influenced by dysbiosis of the gut, as this is a problem for some people with ME.

Hi @Susana -- I would highly recommend the below-linked 22-minute video for you, or anybody interested in constipation, SIBO, liver burden, bile flow, and more. It's one of the best explanatory videos I've seen on how coffee enemas can help enormously with all of these conditions (and many more). It really gives a message of some very plausible solutions.

The author of the video was able to overcome some severe constipation, with associated CFS-type symptoms (though he never had ME/CFS). Not only is the video informative, but I also found it to be fairly engrossing, even entertaining--especially the way he weaved his artwork and own story in with the science of what he was talking about.

All the best to your son, and I hope he can find some relief soon!

How I Reversed Chronic Constipation Using Coffee Enemas! | SIBO IBS-C Gallstones

 

[Susana]

Many thanks, Wayne.
I'll look at this now.
Sorry not to have replied sooner, but I don't spend so much time online as many who are younger than me!
People on this forum are immensely helpful!
best
Susana