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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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Need advice quite urgently

Messages
88
My partner has had ME 4.5 years, beginning with shingles. It's always been mild, she gave up work but managed a restricted life. She's never had any indication of gut issues (all test results indicated very good gut function) but she lost a lot of weight in a slow slide over about 18 months to 7st 7lbs (105lbs - BMI 16.4). She turned it round by eating ave 2,200 calories a day and put back about 1/2 stone (7lbs) to reach BMI 17.5.

In mid-July she had a virus (we think), with fever, sickness and diarrhoea. The diarrhoea has continued ever since, the last few days she can keep nothing down. She's lost 4 lbs in the last 8 days and her weight yesterday was 7st 3lbs (101lbs - BMI 15.8).

She saw a doctor in mid-August, who tested for e-coli & various other things & told her there was nothing wrong with her. She saw a nutrition specialist last week, who recommended a day of bone-broth fast followed by introducing egg yolks and then other foods - the egg yolks coincided with the worst stomach reactions yet. She saw her Perrin osteopath on Friday, who was sufficiently shocked that she wrote a letter to our GP recommending various tests.

In the meantime, she hasn't got up today, feeling lightheaded and heart rate very high when she stood up. She's drinking ginger-infused boiled water. It's 3 days since she kept anything at all in long enough for any digestion to have taken place.

I have no idea what to do. Any suggestions gratefully received.
 

Hufsamor

Senior Member
Messages
2,756
Location
Norway
I am really not sure when she is as ill as this.

I cant do bone - broth, it makes me really ill, even if i am ok before.

I know a few people who drinks and lives on those energy drinks from the pharmacy for weeks at the time. There are different ones, with and without milk. It might be worth a try.

(Edit- not enegy, but nutrition? Those you give old people ...
Also, se if she can have some salt..salt shots if she can take it.

And- she is very lucky to have you! Remember to take care of yourself as well❤️)
 
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Eastman

Senior Member
Messages
526
... feeling lightheaded and heart rate very high when she stood up.

Dehydration? From WebMD:

Signs of severe dehydration include:
  • Not peeing or having very dark yellow pee
  • Very dry skin
  • Feeling dizzy
  • Rapid heartbeat
  • Rapid breathing
  • Sunken eyes
  • Sleepiness, lack of energy, confusion or irritability
  • Fainting
...

Severe dehydration is a medical emergency and needs to be treated immediately.
 

Hip

Senior Member
Messages
17,789
My partner has had ME 4.5 years, beginning with shingles.

Enterovirus infection is known to precipitate shingles (see here), so the ME/CFS may be have been due to enterovirus.



In mid-July she had a virus (we think), with fever, sickness and diarrhoea. The diarrhoea has continued ever since, the last few days she can keep nothing down.

The diarrhea could be due to IBS. IBS can be triggered by infection. Post infectious IBS has been linked to various pathogens including Campylobacter, Shigella, Salmonella and Escherichia coli. For my own IBS-D, I find peppermint oil capsules very helpful for reducing diarrhea.

However, if she is vomiting after eating, I don't think that is a typical IBS symptom.

Vomiting might however be caused by MCAS (mast cell activation syndrome). If mast cells are activated in the gut because of certain chemicals or substances in the food, it can cause symptoms like nausea, vomiting, stomach pains and diarrhea. MCAS is treated with antihistamines and mast cell inhibitors, and by avoiding trigger foods or chemicals.


If she continues to lose weight because of the inability to keep food down, perhaps you might consider going to A&E, and seeing what they have to say.
 

Hip

Senior Member
Messages
17,789
My partner has had ME 4.5 years, beginning with shingles.

By the way, this may be relevant:

A small minority (around 1.5%) of ME/CFS patients have shingles (varicella zoster virus reactivation) that starts off their whole illness. Within weeks, the antiviral acyclovir can make dramatic improvements to such patients.

Source: ME/CFS Alert - Dr John Chia, Part 1, timecode 6:58
 
Messages
88
Thank you everyone. She's had 2 portions of plain rice today & I'm just making the third. She's had almost a litre of rehydration solution and another litre or more of boiled water with ginger infusion. And its all stayed in. She's quite resistant to doctors as so many have told her there's nothing wrong with her over the last 4.5 years, but she accepted that if she couldn't keep any food in today then it would have to be A&E. As it is, we're going to see if we can speak to our GP on the phone tomorrow morning, & I've ordered peppermint oil capsules for delivery tomorrow. Hanging in there.
 

Gingergrrl

Senior Member
Messages
16,171
Raw liver, raw milk, eggs, bacon, ham, bone broth, oysters, mussels, clams, fermented vegetables, kefir, kombucha, rice bran, yeast+ all the other healthy foods full of nutrients.

If your partner has MCAS (and she may not) but if she does, the list of foods above is extremely high histamine and probably not safe foods.

I would try plain rice, plain cooked ground lamb, or a plain sweet potato (and salt is okay) to see if any of these are tolerable.
 
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Messages
151
Any source for your claim those foods are high in histamine? Not that histamine is bad. And can you explain why you think histamine is bad with sources?

Plain rice has no b vitamins or minerals which are needed for carbohydrate metabolism so consuming refined grains depletes micro nutrients from the body plus is covered in round up if it is not organic which is an anti biotic and chelator.
Lamb meat has way less nutrients than the organs.
Organic sweet potato cooked or fermented is fine. Potato is kind of hard to eat raw. Table salt lacks the over 50 minerals sea salt or pink Himalayan salt has.
So I would not try any of the above recommendations.

Raw organs, milk, bone broths, butter, eggs are the easiest foods to digest, and it is impossible to have an allergy to them.
 

CFSTheBear

Senior Member
Messages
166
Any source for your claim those foods are high in histamine? Not that histamine is bad. And can you explain why you think histamine is bad with sources?

Plain rice has no b vitamins or minerals which are needed for carbohydrate metabolism so consuming refined grains depletes micro nutrients from the body plus is covered in round up if it is not organic which is an anti biotic and chelator.
Lamb meat has way less nutrients than the organs.
Organic sweet potato cooked or fermented is fine. Potato is kind of hard to eat raw. Table salt lacks the over 50 minerals sea salt or pink Himalayan salt has.
So I would not try any of the above recommendations.

Raw organs, milk, bone broths, butter, eggs are the easiest foods to digest, and it is impossible to have an allergy to them.


It’s not impossible to have an allergy to them, and if you don’t have traditional allergies but have a mast cell issue you can easily be triggered by these foods. Please don’t give out advice that could potentially be dangerous to someone.

Most people are fine with high histamine food, indeed many of them are delicious and good for you. Sadly they also can cause problems for many chronic illnesses.


There’s a brief mention of the role it can play by Dr Afrin here: http://blog.katescarlata.com/2018/02/01/mast-cell-activation-syndrome-part-3-role-nutrition-stress/

But it’s readily googleable, just look for “low histamine diet” or “histamine chronic illness” and you’ll find plenty of information.
 

Wonkmonk

Senior Member
Messages
1,003
Location
Germany
A small minority (around 1.5%) of ME/CFS patients have shingles (varicella zoster virus reactivation) that starts off their whole illness. Within weeks, the antiviral acyclovir can make dramatic improvements to such patients.

Dr Montoya mentions such a case here (1:00):