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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Messages
9
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

Senior Member
Messages
763
Location
USA
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.
 
Last edited:

splusholia

Senior Member
Messages
237
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.
 

LINE

Senior Member
Messages
763
Location
USA
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.
 
Last edited:

EddieB

Senior Member
Messages
600
Location
Northern southern California
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

Messages
74
@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