Stomach Decline in Extremely Severe ME/CFS

[GreenGrapes]

Hello.

I am a FT caregiver for my daughter, who’s in her early 30s and has suffered from ME/CFS for four years (the past two years severe, and the past 9 months extremely severe). She got sick after a virus in 2019 and has been in a gradual decline since. She’s been housebound since the end of 2020 and completely bed bound since October 2022. In December 2022, she was diagnosed w/ hEDS & a tethered cord, but the surgeon said she isn’t well enough for surgery. He referred her for an MCAS evaluation; we are in the process of coordinating with a specialist and a local doctor.

Up until early May 2023, besides severe PEM, brain fog, & general pain, her primary symptoms were OI and extreme sensory sensitivity/overstimulation. Digestion was pretty good overall but she avoided dairy (due to lactose intolerance) and insisted on continuing to consume soymilk, which consistently made her gassy.

However, about 8 weeks ago, after a 5-day trial of zinc to prevent bed sores, she started experiencing excruciating stomach pain for hours after each meal. Now she's becoming more and more sensitive to foods she could previously tolerate. She’s panicking that this stomach pain will also become chronic. It’s becoming difficult for her to eat enough. She describes the stomach pain like "stomach PEM," and her stomach can’t tolerate the quantity or type of food. On a bad day, even drinking water or swallowing saliva hurts.

No constipation, diarrhea, vomiting, or bloody stools. Some gas, mostly related to the soymilk... We had an appointment scheduled with a GI doc a couple weeks ago but when the office called to confirm, they told us the doctor couldn't handle a patient coming in on a stretcher (even though we'd told them about her condition when scheduling)...

I’m leaving out A LOT of details, but hopefully nothing relevant.

My daughter asked me to post these questions, which I have typed from her handwritten notes:

• What advice would you give someone with extremely severe ME/CFS whose stomach was just starting to decline?
• What are the main things you think caused your stomach to decline?
• What do you think you did that was helpful?
• What do you regret doing/wish you’d done differently?
• Advice on how I can retain the capacity to eat and drink for as long as possible (and ideally never fully lose it)?
• Advice on how to retain the capacity to eat and drink as much variety of food as possible and get as many calories from food and drink as possible, for as long as possible?
• What was your experience like seeing GI doctors? Did you get any benefit from trying to treat any underlying stomach issues? Any harm from these testing/treatments?
• What was your experience with trying new oral meds during the period your stomach was declining but you were still eating and drinking? Did the new meds cause stomach crashes? How did increasing/decreasing meds or supplements you were already on affect your stomach? My hunch is that new oral meds will cause severe stomach crashes for me and I’m not sure if I’m at the point I need to take new meds by IV.
• At what point should I get a feeding tube? IV nutrition? Or saline IV? A PIC line? Is there anything you wish you’d known about these things before getting them?
• Is there anything you do to reduce stomach/GI pain/discomfort? Do you think any of these things reduce the speed of your stomach decline or are they solely to reduce pain?
• Is there anything you wish you’d done in the earliest stages of your stomach decline to ensure you were more comfortable or in a less life-threatening situation while your stomach was much worse?
  
  • For example, I wish that in the early stages of my blood pressure/blood regulation decline I’d gotten my body used to elevating my legs, wearing stockings, and lying on my back. Now I can’t do any of those things w/o blood regulation crashes, but if I’d gotten my body familiar with them before blood regulation issues got too bad, I probably would be able to tolerate them now.
• Any other wisdom you would share?

Answers to any of these questions from anyone with ME/CFS (or caregivers) who’ve experienced a stomach decline would be helpful. Links to previous threads also appreciated.

Thank you!!!

 

[LINE]

My daughter asked me to post these questions, which I have typed from her handwritten notes:
>> sorry both of you have to endure this.

• What advice would you give someone with extremely severe ME/CFS whose stomach was just starting to decline?
• >> The microbiota is the community of organisms that live in the gut. Diversity is different from person to person. This diversity responds differently to foods. In other words, there are certain foods that will feed either the good or bad bacteria.

>>every food contains molecules that the bacteria can use to grow - if she happens to have bad bugs in the gut, then they can use certain foods to proliferate. Soy is not necessarily bad for most (organic) but with certain bacteria in the gut, the soy can feed them. If the bad guys get stronger then you become worse.

>>Lactose intolerance is generally a clear sign of pathogenic invasion. They refer to this as Secondary Lactase Deficiency. You can also develop intolerance to other foods such as wheat (gluten), corn and processed foods. Once the gut reestablishes balance, then the food intolerances become lessened.

>>I would suspect that the root problems are in the gut, in other words, she has some bad bugs. Interesting enough, the gut is a major organ system, most of the immune system resides in the gut, some suggest 70%

>> if the gut is damaged, then it tends to be a systemic problem. Activating the immune system is never a positive thing.

• What are the main things you think caused your stomach to decline?
• >>contracting bad bugs.
• 
  
• What do you think you did that was helpful?
• >>avoidance of offending foods - some alternative medicine tricks to support gut function. Reducing the bad bugs.

>>Did the doctor run any tests to see if there are pathogens residing in the gut? (Stool tests). That could be helpful. As a side note, these tests should not be considered conclusive but can be good tests for screening.

>>The tests can also look for yeast/fungal infections which can be problematic. I would venture to say that there is pathogenic invasion of some sort.

>>Search for Dr. Sabine Hazan - she is a cutting-edge gastroenterologist - she has some educational material including a book. She understands the microbiota (microbiome). I have more information if needed.

Jordan Rubin also has a book about digestive health. He describes his constant search to recover from his debilitating disease and solved his problem with fixing the gut. He was/is a big believer in fermented foods which contain live probiotics that can inhibit some of the bad bugs. I can give you more specifics on that if you like.

• What do you regret doing/wish you’d done differently?
• Advice on how I can retain the capacity to eat and drink for as long as possible (and ideally never fully lose it)?
• Advice on how to retain the capacity to eat and drink as much variety of food as possible and get as many calories from food and drink as possible, for as long as possible?
• What was your experience like seeing GI doctors? Did you get any benefit from trying to treat any underlying stomach issues? Any harm from these testing/treatments?
• What was your experience with trying new oral meds during the period your stomach was declining but you were still eating and drinking? Did the new meds cause stomach crashes? How did increasing/decreasing meds or supplements you were already on affect your stomach? My hunch is that new oral meds will cause severe stomach crashes for me and I’m not sure if I’m at the point I need to take new meds by IV.
• At what point should I get a feeding tube? IV nutrition? Or saline IV? A PIC line? Is there anything you wish you’d known about these things before getting them?
• Is there anything you do to reduce stomach/GI pain/discomfort? Do you think any of these things reduce the speed of your stomach decline or are they solely to reduce pain?
• Is there anything you wish you’d done in the earliest stages of your stomach decline to ensure you were more comfortable or in a less life-threatening situation while your stomach was much worse?
  • For example, I wish that in the early stages of my blood pressure/blood regulation decline I’d gotten my body used to elevating my legs, wearing stockings, and lying on my back. Now I can’t do any of those things w/o blood regulation crashes, but if I’d gotten my body familiar with them before blood regulation issues got too bad, I probably would be able to tolerate them now.
• Any other wisdom you would share?

Answers to any of these questions from anyone with ME/CFS (or caregivers) who’ve experienced a stomach decline would be helpful. Links to previous threads also appreciated.

 

[LINE]

https://progenabiome.com/our-services

Dr. Hazan's website.

 

[LINE]

Support of the GI tract with dense nutrients can help restore, this would also include some specific botanicals.

 

[splusholia]

Having been in this position myself, I’d get on prebiotics/probiotics sooner. I’d start gentle — perhaps a sachet of bimuno in a bit of water. If that’s tolerated, then perhaps some Bifido longum capsules. Anything to move the microbiome in the right direction.

 

[splusholia]

… or perhaps the bifido infantis drops that are designed for babies.

 

[LINE]

https://www.hexferments.com/products/vegan-miso-kimchi

This is a live fermented product, so it has live organisms in it - the bacteria in this have powerful live organisms that can address some of the bad bugs. Likely, just taking some smaller doses of it (tablespoon?) per day would be ideal. My nephew was able to fix his Irritable Bowel Syndrome with this. It is suggested not to heat this product up since the heat will destroy the live bacteria.

Something I may have missed is that traditional gastroenterologists may not be able to provide all the answers. Typically, they run tests that can rule out some of the more common issues but typically do not know much about the microbiota or how to address that. That is why I listed Dr. Hazan.

 

[andyguitar]

However, about 8 weeks ago, after a 5-day trial of zinc to prevent bed sores, she started experiencing excruciating stomach pain for hours after each meal.

Zinc can cause stomach problems in some people. It might just be coincidence, but if it was me I'd be inclined to blame the zinc.

 

[EddieB]

I would definitely agree here. Zinc is very irritating for me, And this is the case for many foods, supplements, medications for me. What seems ok may not be, takes a while to show up, a delayed response.
I would also be extremely careful with pre/ probiotics. Yes, they are helpful for some people, but can do as much harm as good for those of us that are severe.
To venture a guess, your daughter probably has some level of gastritis/ stomach inflammation. Cooling, soothing foods and supplements, avoid irritants should help.

 

[Kes]

@GreenGrapes I'm really sorry to hear about your daughter's situation, it sounds really horrendous. I just wondered if you had thought about having her do a Comprehensive Digestive Stool Analysis with professional guidance as to how to approach treatment. Is she able to drink ginger tea? My situation is not the same but just in case there's any benefit in sharing a few things. I've had problems with bloating for 8 years but it would wax and wane but I got food poisoning in January from some clotted cream. I now can't tolerate cows milk but I other dairy seems okay. I know have goats milk. I tried a low histamine diet recently without much benefit and unfortunately I think stopping the multi strain live yoghurt I was having was a really bad idea as my stomach in the last 3 weeks has been really the worst it's been. I found that taking half a chicken stock cube in boiling water extremely helpful and effective for settling my stomach although sometimes I might have needed 2 mugs but since the latest flare up I've needed 4 mugs of it to settle things down so I can get to sleep. I've had to avoid in recent weeks lots of things that I can't digest, high protein foods mostly. I've been having the yoghurt before each meal, that has 3 live strains of good bacteria in it. I've been having a lot of vegetable soup, toast, eggs. A bit of fish, potatoes, vegetables, and fruit. Plain food. Anyway I really hope your daughter can get help soon. I have been consulting a private endocrinologist over the telephone who's based in London. Dr Abbi Lulsegged. He no longer works on the NHS and he's not cheap but he came very highly recommended to me. I know someone on this site who was greatly helped by him when he did still work on the NHS. I've only had one appointment so far and need to schedule a follow up for test results and plan of action. He has a special interest in fatigue and unexplained conditions and is also a diabetologist. I don't believe there's anyone like him currently working on the NHS

 

[Kailyn]

am a FT caregiver for my daughter, who’s in her early 30s and has suffered from ME/CFS for four years (the past two years severe, and the past 9 months extremely severe).

Hi GreenGrapes. I'm so sorry to hear this. I found this thread today, while trying to find help for my own situation.

I'm in a similar boat- I'm a caregiver to my husband. We're both in our mid-30s. Last week, I was in the midst of writing an update to his doctor, about how his caloric intake was something that was giving me a lot of hope.

Well, I should have known I was tempting the universe by writing that. Over the last few days, his nausea has worsened, so that ondansetron and prochloreperazine no longer work. He is also describing the symptoms of "slow digestion" and "feeling full after a few sips." A few days ago, he was able to have solid food for dinner, and sometimes for an afternoon snack. Now, he can only consume liquids.

I think it might be best to approach what he is experiencing as gastroparesis, as much as that terrifies me. I was wondering if you or any of the others here have diet recommendations, or other recommendations, for this.

Specifically, I'm really confused about what to feed him. I've been relying on high fat foods like avocado, peanut butter, soylent powder, high fat oatmilk, and butter to get him the calories he needs.

It seems like with gastroparesis, you avoid high fat foods- how do I get him even close to his daily amount of calories? Are there some foods that are dense for calories, without being sources of fat?

 

[Kes]

Hi @Kailyn really sorry to hear about your husband's situation. Wish I could offer something helpful. For what it's worth I just prayed a binding prayer for him. I wonder if when he is able to eat solid foods again he may be able to eat eggs, houmous..tomato three bean soup..cheese, cheese oatcakes, chickpeas.hot chocolate. Sorry if these are not suitable. Best sign off now. Wishing him and you well.

 

[Kes]

P.S. Coconut butter?

 

[GreenEdge]

@GreenGrapes, your daughter sounds much like Ribeye Rach on YouTube.

From 2 years ago:
Why I Started The Carnivore Diet | Lyme Disease, POTS, Chiari, Intracranial Hypertension
Carnivore Diet 6 MONTH Update // 10 Improvements I've Seen (EDS, Lyme, POTS, Chiari)
Carnivore Diet 8 MONTH Update | Healing from severe chronic illness

Rachael is now doing much better and is back into doing hikes and rock climbing. From 3 months ago:
What I Eat In A Day Hiking in Norway (Animal-Based Diet) | Trolltunga Hike, Travel Vlog

 

[SpinachHands]

I care for my partner who has been fully bedbound since December, and when it comes to diet I've been pretty much flying blind, so a lot of trial and error to make sure they're getting food that supports their health without being overwhelming. They're only able to have food through a straw, as chewing and feeding themselves has been too tiring/exerting.
I started them on roughly 3-4 liquid meals a day, but their fatigue was worsening after a month and I realised their caloric intake was way too low. I increased the calories in their meals (adding complan, protein powder, full fat milk, soft cheese, cream, etc.) but it was giving them a lot of stomach issues after eating.
What we have now is every hour and 15 mins roughly, they have 200ml of a meal, totalling 10 through the day, all roughly the same amount of calories.
Last week I finally heard back from the dietician/nutritionist they'd been referred to, 4 months too late! All she said was maybe try meal replacement drinks too, and when reintroducing solid food start with soft versions of what they already eat, nothing too new to their system.
I don't know if this was any help, but I just mean a liquid diet is possible, if solid foods are causing more pain. I recommend having a strict mealtime schedule, and working out the calories, protein, salt, carbs at of all usual meals and making sure it's all spaced out.
I can't give much more complex advice about the gut, stomach, intestines, because I honestly have no clue, and am not receiving much medical help in the way of that. So if you've got a doctor that's willing to do anything, be persistent and keep at them to get the tests/treatment you need.

 

[GreenEdge]

I care for my partner who has been fully bedbound since December, and when it comes to diet I've been pretty much flying blind, so a lot of trial and error to make sure they're getting food that supports their health without being overwhelming. They're only able to have food through a straw, as chewing and feeding themselves has been too tiring/exerting.

May I suggest raw egg yolk for a liquid diet, they contain every essential nutrient in the proportions we require; and in the form the body wants (not in some plant form that then needs to be converted).

Edit: Discard cooking and eating the egg white (it causes irritation).

Eggs were commonly served in hospitals (to speed healing) before the 1980's when fear of cholesterol changed everything. Oh, BTW since the 2015 update to US Dietary Guidelines, cholesterol is no longer a nutrient of concern.

EGGNOG IN HISTORY, HEALTH, AND HOSPITALITY
In the 19th century, Doctors believed the drink was an ideal way to deliver prescriptions and nutrients for those on liquid diets.
...
Egg nogs formed part of liquid diets for patients as these diets were:
” … easily digestible, … free from irritating condiments and mechanical irritants. … Such diets should be give in small portions, 60-400 cc, depending on the nature of the case. The feedings should be repeated every two hours unless there are contraindications. At least six to eight feedings are required daily.” —Diet Manual, Fitzsimons General Hospital, 1941

I think raw egg yolk is superior to everything, it's an embryo that contains nutrient required to make a chicken.

I started them on roughly 3-4 liquid meals a day, but their fatigue was worsening after a month and I realised their caloric intake was way too low.

When we eat as nature intended (non-processed animal based foods) and drink only water, the body then responds naturally, so we can stop counting calories and trust our instinct, and eat according to hunger.

 

[Wayne]

What we have now is every hour and 15 mins roughly, they have 200ml of a meal, totalling 10 through the day, all roughly the same amount of calories.

Hi @SpinachHands -- One of my diet staples is wheatgrass juice powder. Very concentrated nutrition, and can be taken in liquid form. I put some in a quart of water and sip on it throughout the day. Sometimes my body only wants one small sip. Other times it wants several. I just try to tune in as I sip, and it works well for me.

 

[GreenEdge]

For the last 5 days I’ve been testing a soft food diet idea I had (raw egg yolk and cooked egg white) but it caused me irritation and I’ve had little sleep for the last 4 nights. I’m now back to eating normally again. Next time I’m going to try just egg yolk. Egg yolk is very nutrient dense and contains every essential nutrient in the exact proportions we require. As a soft food diet nothing could be better. I need to test everything on myself first before I can recommend to clients.

Egg white is designed to both feed the embryo and to defend against animal predation, but when cooked the protein is denatured and that’s usually makes it okay for most people, however it can cause irritation (anxiety, itchy skin, diarrhea) in some people, including me as I just found out.

 

[GreenEdge]

May I suggest raw egg yolk for a liquid diet, they contain every essential nutrient in the proportions we require;

OMG raw egg yolk only diet (a liquid version of lion diet) actually works. Rapid healing of central nervous system (CNS) in just 1 week. Can I make a full recovery?

I think my nervous system is regenerating:

• My sense of touch is becoming more sensitive.
• My skin is less dry (sticky sensitive hands).
• My under-active muscles are coming back online and over-active muscles as settling down.
• My posture is self-correcting. Like the weight of the world has been lifted off my shoulders.

This is like aging in reverse. Could I be biologically getting younger?

Could someone else please test this and report back?

Directions:

1. Crack 6-12 extra large eggs into a bowl being careful not to break the yolk sack.
2. Separate the yolk from the white. Remove white string (if any).
3. Rinse the yolk under running water to remove residual white.
4. Puncture yolk in mouth to drink contents, and discard any white you feel.
5. Repeat steps 2-4 for each egg yolk.

Dispose of egg white by blending with water and spreading in your garden as a fertilizer.

Only eat when hungry. Your body eats for nutrition not calories.
If you're going to eat anything else, eat the yolks first so the liquid yolk can pass through the stomach quickly.

Edit: After eating this my brain starts healing almost immediately from the fat nutrients, and my sense of touch became more sensitive as it healed before it settled down and I now feel alive like the normal healthy person I once was. After 1 week, I now recover from exercise in 2 days instead of 4+ days.

Working out minimum requirements for healing:
Let's first test the all natural approach - just raw yolk from extra large free range eggs.
Tip: Good quality eggs have orange colored yolks.

 

[GreenEdge]

Nutrition calculation:
An egg is 40% yolk and 60% white. Based on 800g carton of eggs.
40% of 800g = 320g yolk in a dozen extra large eggs.

Calories in 12 raw egg yolk is 322 per 100g. 322 / 100 x 320 = 1,030 calories / day

Egg vitamins:

Name​	Egg Yolk, Raw (average content; µg/100g)​	12 egg yolks (µg)​	% daily value​
Vitamin A or Retinol​	371​	1187.2​	132%​
Vitamin A precursor or Beta-carotene​	88​	281.6​	31%​
Vitamin D or Cholecalciferol​	5.4​	17.28​	86%​
Vitamin E or Alpha-tocopherol​	2580​	8256​	55%​
Vitamin K or Phylloquinone​	0.7​	2.24​	2%​
Vitamin C​	0​	0​	0%​
Vitamin B1 or Thiamin​	176​	563.2​	47%​
Vitamin B2 or Riboflavin​	528​	1689.6​	130%​
Vitamin B3 or Niacin​	24​	76.8​	0%​
Vitamin B5 or Pantothenic acid​	2990​	9568​	191%​
Vitamin B6​	350​	1120​	66%​
Vitamin B8 or Biotin​	27.2–49.4 2​	87 - 158​	218 - 396%​
Vitamin B9 or Folate​	146​	467.2​	117%​
Vitamin B12 or Colabamin​	1.95​	6.24​	260%​

Egg minerals and trace elements:

. . . . . . . . . . . . . . .Name . . . . . . . . . . . . . . .​	Egg Yolk, Raw (average content; mg/100g)​	12 egg yolks (mg)​	% daily value​
Calcium​	129​	413​	32%​
Copper​	0.077​	0.25​	27%​
Iodine​	0.18​	0.58​	384%​
Iron​	2.73​	8.74​	49%​
Magnesium​	5​	16​	4%​
Manganese​	0.055​	0.18​	8%​
Phosphorus​	390​	1248​	100%​
Potassium​	109​	349​	7%​
Selenium​	0.056​	0.18​	326%​
Sodium​	48​	154​	7%​
Zinc​	2.3​	7​	67%​