Scared my partner is going to starve or die of dehydration in the hospital

[SpinachHands]

I'm really scared my partner's going to die of malnourishment or dehydration in the hospital because they don't know how to treat my partner's MCAS.

Their MCAS has been getting so bad the past few weeks that they've been severely reacting to all food and even water. The dehydration and malnutrition was getting really bad, so even though we really wanted to avoid hospital where they have been bedbound for over a year, we didn't have any other options. They've been really good with my partner's ME at the hospital thankfully, even got us a private room in A&E.

Unfortunately none of the doctors seem to know anything about MCAS. I've desperately been trying to get private or NHS doctors who understand and can treat MCAS or consult, but noone is available soon or can help. The specialist that diagnosed them and prescribes their usual MCAS meds (ketotifen, Montelukast, sodium cromoglicate) has said she can only consult if the hospital request and pay for it, which I doubt they will. We know there's other meds they could try. We don't want to try any treatment without someone informed on MCAS advising though- where they are so sensitive, the wrong things could make them really sick. They're getting so thin, they're barely tolerating the IV fluid at the slowest rate it'll go.

We're just really scared, and don't know how to get their MCAS better before they starve. I don't think the hospital does either.

 

[southwestforests]

Living four thousand miles away and having no personal experience with having MCAS, I'm a bit short on ideas.
Definitely see the stress and anxiety, don't know what to offer other than to let y'all know that I care.

 

[Seadragon]

@Countrygirl Not sure if you have any ideas on how to get them some help here? Hope you don't mind me tagging you but you helped me out two years ago.

@SpinachHands

 

[sb4]

Would tube feeding help or at least IV saline?

 

[Rootoo]

You and your partner are in my thoughts, SpinachHands.

Unfortunately, I don’t have any suggestions that would help you both immediately.

Have you tried any of the following for sources of MCAS information/support?

The 25% ME Group (nationwide UK support for people with severe and very severe ME/CFS)

Science for ME (an international group of people with a science background who have ME/CFS, who care for someone with ME/CFS, or who have an interest in it)

The Bateman Horne Center (has fact sheets for people with ME/CFS and their carers. I believe that there is one for ER admission)

 

[katabasis]

Have you tried omalizumab (zolair)? That's probably the other major MCAS treatment that I didn't see you mention.

When you say that she can't tolerate food/water or IV saline, can you clarify the symptoms? Are they anaphylactoid or just things like nausea, pain, itching, etc.? Having a mast cell reaction to IV saline sounds kind of unusual - not saying it's not possible, but I have to wonder if there's more than just MCAS at play here. It might make sense to get blood testing for tryptase and/or serum histamine, just to see if the extent of mast cell involvement matches the severity of the symptoms.

Does your partner have any signs of infection or even just dysbiosis? Maybe the mast cells are being aggravated by the things they are essentially designed to fight. If there are a lot of gastrointestinal symptoms, maybe something like Rifaximin (which is often used in IBS because it tends to spare more 'good' bacteria) would be helpful.

Endocrine abnormalities can also affect mast cells - for instance, Corticotropin Releasing Hormone (CRH), which is itself released in response to stress, increases synthesis of mast cell mediators, which is why MCAS is often made worse by stress. It might be a good idea to do some endocrine bloodwork to see if this is a factor.

 

[junkcrap50]

You have a right to be concerned. Lost my grandfather to kidney failure after an easy routine surgery because he got dehydrated and then given the wrong fluid infusions. Parent also had surgery and was complaining of thirst and dehydration - other parent (an MD) - had to basically teach the hospitalist about fluid management. In the end we got our way because we wore down the hospitalist & he would give anything to stop our complaining and teaching. This was in the US at big research hospitals.

Make sure they're drinking and consuming salt. Sneak it into them if you have to.

 

[lenora]

I'm sorry that things aren't going well. Has gastroparesis ever been discussed? It sounds as if your partner may be at that point....at least for the time being.

Gastroparesis can also be caused by diabetes. I hope they're running many blood tests.

I don't mean to make things more confusing; that's not helpful at all. I wish I could offer more. Are they conscious? I hope so....but without pain.
You must be a mess and I'm sorry. Thinking of all of you. Yours, Lenora

 

[SpinachHands]

Edit: UPDATE 20/1/25
Thank you so much to everyone who replied. While I've not had the energy to reply to most, I've done my best to read all of them and look into everything recommended. Nothing happened over the weekend as there are no doctors. On Friday, the drs here finally contacted a bunch of the NHS doctors I'd recommend that specialise in MCAS, but really it doesn't seem like they are convinced this is MCAS, despite not having spoken to any doctors with experience with MCAS yet! Will see if they've had any responses today.

We honestly think my partner will get better care if we go home and go private. Some private drs I contacted won't interfere while my partner is under hospital care, and now they're not doing the IVs the hospital is literally providing nothing. My partner has been able to drink more water and have some nutrition drinks over the weekend (on a schedule and titration we had to come up with ourselves). Since starting eating/drinking again their MCAS is flaring up a bit so definitely still urgently needing help. But we've realised we are not going to get that here. With the current trajectory they should be able to self-discharge on Tues/weds. Still need to find out if they will be provided transport if they do that however.

Thanks again everyone who commented! Hopefully next update will be once we're at home.

~~~~

 

[southwestforests]

My partner has been able to drink more water and have some nutrition drinks over the weekend (on a schedule and titration we had to come up with ourselves). Since starting eating/drinking again their MCAS is flaring up a bit so definitely still urgently needing help.

Hey Y'all; Glad they been able to get some nutrition in them. Disappointed at the health care situation.
Wishing the private sector providers can be successful.

 

[MecfsPatient]

Edit: UPDATE 20/1/25
Thank you so much to everyone who replied. While I've not had the energy to reply to most, I've done my best to read all of them and look into everything recommended. Nothing happened over the weekend as there are no doctors. On Friday, the drs here finally contacted a bunch of the NHS doctors I'd recommend that specialise in MCAS, but really it doesn't seem like they are convinced this is MCAS, despite not having spoken to any doctors with experience with MCAS yet! Will see if they've had any responses today.

We honestly think my partner will get better care if we go home and go private. Some private drs I contacted won't interfere while my partner is under hospital care, and now they're not doing the IVs the hospital is literally providing nothing. My partner has been able to drink more water and have some nutrition drinks over the weekend (on a schedule and titration we had to come up with ourselves). Since starting eating/drinking again their MCAS is flaring up a bit so definitely still urgently needing help. But we've realised we are not going to get that here. With the current trajectory they should be able to self-discharge on Tues/weds. Still need to find out if they will be provided transport if they do that however.

Thanks again everyone who commented! Hopefully next update will be once we're at home.

~~~~

Glad you have a plan, so so sorry you are going through this horrific nightmare. Very Severe MECFS is an unimaginable hell and then somehow it’s even worse in a hospital. I was going to mention TPN when seeing your older post as a way to get nutrition without entering the stomach, however I’m hopeful things will improve and you won’t need to escalate to stuff like that.

 

[almost]

I'm glad to hear your partner is doing better. I pray for a recovery well enough to get back home where they are more comfortable. I wish you both the best.

You have a difficult problem, and it has not been an easy road for either of you. One thing I wonder about is target fixation. You've mentioned MCAS frequently in your posts, evidently diagnosed by Dr. Claire Taylor. While I'm not saying she is wrong, I do wonder when someone who believes that many CFSME patients also have PoTS and MCAS. They may. They may not. But, one can also find what one is looking for, and when given the MCAS diagnosis, if that becomes the focus, you can miss the real target, which could be histamine.

I struggle a lot with histamine. I have a lot of allergies and react strongly to certain foods, and it is an issue. I am completely intolerant to cigarette smoke. I react to the point of throwing up if it is strong enough, and my body goes automatically into a seek and destroy mode if I smell ANY of it. I want to know where it's coming from, who's doing it, etc. I can't help it, really! Cigarette smoke is a big mast cell irritant to release histamine. Also, the ONLY drug I know of that will cause a sure-fire reaction in me is Amantadine. Amantadine also interacts to exaggerate histamine response.

My point in this is to suggest concentrating more on histamine rather than MCAS. They may have it, and even if they do, the point is still histamine management. DAO is the enzyme we have to deactivate histamine, and it may be dysfunctional or depleted. There are things like Vitamin C which can help produce more DAO which does help a lot. There are other dietary things you can do, mainly get the basic vitamins, including C, B6, magnesium, copper, iron. I take 4g vitamin C per day. I'll leave you to research that if you wish.

The other thing to think about is this: you can't just concentrate on what can be taken to help, or ingested. I believe you must also consider what is going on in the gut. There are microbes in the gut, Klebsiella at the forefront, which produce histamine. If my microbiome test I did was anywhere close to accurate (and that is an issue), I have 25x the amount a "normal" person does. Is that the source of my histamine problem? Maybe, maybe not, but it is an issue, and where that comes into play in life is asking the question, what does Klebsiella like to eat? Starches. What are starches? Chains (or rings) of glucose. Now look at the ingredient list on the nutrition shake. Those would probably not be a good thing for me to ingest. I'm working on reducing my Klebsiella, so I'm careful not to feed it directly. Does your partner have the same issue? I don't know, but going back through my files, I find this interesting:

Remember the toxicity that is coming out of the body primarily leaves through the gut - it affects the microbiome, the gut plays a big role in recycling / processing of that garbage and as a result is also affected by how much it's processing, just like bristles on your broom - we need to keep them sharp, the biome has the potential to degrade the more the toxicity that comes out. This is often why dysbiosis is perpetuated, has cyclical variation, requires persistence to beat. Reaction and reactivity does not indicate inappropriateness but should signal you to, pulse, give breaks, and or increase support for the modes of dysfunction listed below.
...
Know the common support modes that require attention, support before starting microbial intervention and be aware you might need more support during gut balancing.

Oxalates - fungal issue - OCD / urination issues / grabbing privates / wetting self
Ammonia / Nitrogen - zany behavior - teeth grinding / chewing / night waking / giddy laughter episodes
Histamine - various reaction and reactivity - can often present with flushing or similar
Adrenals - bitter / mood swings whiny / dark circles under eyes / aggravations / sensitive to loud sounds
Constipation (see comments previously stated)
Stimming and reactivity - liver support is helpful here, often times pantethine can assist with fungal aldehydes
Aggression consider Palmitoylethanolamide, adrenal support, checking for constipation, cold brewed chamomile tea
Oxidative stress: Check out glutathione recycling lotion from Thiogenics, nicotinamide riboside, antioxidants

(empahsis mine)
https://biomesight.com/blog/core-concerns-common-support-modes-in-asd

Final point is ammonia. Many MECFS suffers have dysregulation of the ammonia/urea cycle. A large amount of ammonia is being produced from protein metabolism and the body, in trying to get rid of it, flushes a large amount down the transsulfuration pathway. This will show up as large amounts of taurine in the urine, along with elevated uric acid. Ammonia is an amine, as in histamine, (there are other amines, of course) and large amounts of ammonia disposal can increase histamine levels.

Final, final point -- if your partner's body produces more estrogen, that can have a strong interaction with histamine as well.

Best of luck!

 

[Zebra]

but really it doesn't seem like they are convinced this is MCAS,

@SpinachHands

If the hospitalists aren't convinced it's MCAS, are you and your partner allowing the hospital to do testing for alternative, or additional, diagnoses?

I know first-hand how difficult it is to be hospitalized for a prolonged period of time, but wondering if you and your partner are willing and able to take advantage of whatever medical testing they are offering?

For instance, you mentioned a neuro-GI the other day, and a work up for GI issues requires numerous tests that would be best done in hospital, give how severely ill your partner is.

In a seperate post, you were considering pursuing encephalitis/encephalopathy diagnosis, which requires testing that would also be ideal to do in-patient given how severely ill your partner is.

I'm NOT second guessing your instincts in any way. Just wondering if the hospitalists are offering alternative diagnoses to MCAS?

 

[SpinachHands]

In a seperate post, you were considering pursuing encephalitis/encephalopathy diagnosis, which requires testing that would also be ideal to do in-patient given how severely ill your partner is.

Yeah while here the neuros are doing the tests they were planning on doing as an outpatient anyway. Or at least, they had an EEG done and bloods for encephalitis. They've offered an MRI but they're not feeling well enough rn so waiting to see what comes back from those. Oddly the hospital haven't done any gastro investigations, they seem to be focusing on the neuro stuff, even though it's from some completely different symptoms that happened ages ago, which we do keep explaining. Handy having this stuff done now, but also, least of our concerns. I think they've also done metal poisoning tests interestingly? They don't really have any ideas though (which they have said)

 

[SpinachHands]

Amantadine also interacts to exaggerate histamine response.

The Amantadine definitely seemed to make their MCAS much worse!

Now look at the ingredient list on the nutrition shake. Those would probably not be a good thing for me to ingest

Unfortunately it's the best we have for the max calories/nutrition with minimal intake. They tried an elemental drink too but even worse reaction.

large amounts of taurine in the urine

Their metabolomix test did show high Taurine! Also a lot of the symptoms you linked make sense, the uncontrollable laughter/giddiness is one of the reasons we were looking into encephalitis.


Will post a separate update but we have a private gastro helping that is looking all into the gut stuff for us, thank you for all this info

 

[Zebra]

Hi, @SpinachHands

Thank you for letting us know.

Usually autoimmune encephalitis antibodies are tested in the blood and cerebral spinal fluid simultaneously. One needs to lay perfectly flat for a prolonged period of time after the spinal tap, so that's one of the reasons I thought it would be a good test to have done in hospital.

Also, probably best to get that the brain MRI prior to spinal tap. Can the hospital administer a sedative prior to the MRI to make it more bearable for your partner?

Also, many forms of autoimmune encephalitis cause autonomic dysfunction.

And that autonomic dysfunction affects the entire GI tract from throat, esophagus, stomach, small bowel, colon, rectum, and all of the GI the sphincters from entrance to exit.

In one type of AE in particular, I believe it's DPPX, the GI symptoms are a hallmark symptom.

Not trying to meddle, just sharing information I've learned the hard way, and things I wish I had done differently early on in my illness (like your partner) when it was still possible to identify a cause and treatment.

 

[almost]

Thanks for the update.

My earlier post was not even half what was in my head, but the post was long enough as it was, and my energy was running out. I started losing focus at the end of the post. The point was to show histamine is very complex and not fully understood, even by doctors who are supposed to understand it.

A couple last tidbits would be to take a long look at the ammonia processing. The giddy laughter is most likely laughing gas produced by the body itself when the ammonia load is so high (or urea cycle is so poorly functioning) that it disturbs NO processing and it accumulates in the blood. The taurine suggests that it is ammonia that is the problem. You'll need to find out where the ammonia is coming from -- lots of possibilities.

I'm not surprised taurine was high -- that's why I mentioned it. The body makes the taurine to remove the ammonia, which also means those building blocks can't be used by the body to make other things it needs. I would not be surprised glutamate is also high -- that would be the next link. The transsulfuration pathway is the drain from the folate / methylation cycles, so those are in play as well. This chain continues for a while.

Best of luck.

 

[katabasis]

A couple last tidbits would be to take a long look at the ammonia processing. The giddy laughter is most likely laughing gas produced by the body itself when the ammonia load is so high (or urea cycle is so poorly functioning) that it disturbs NO processing and it accumulates in the blood.

I think you are conflating nitrous oxide (laughing gas) with nitric oxide - very different compounds. AFAIK there is no endogenous pathway to produce nitrous oxide. High ammonia due to urea cycle problems (or more commonly, due to liver failure) can itself certainly cause giddiness - usually in tandem with other symptoms of delirium. If there are neurologists involved and encephalitis is on the table, I imagine they will have ruled this out early, though, since hepatic causes should be pretty easy to test for.

 

[almost]

think you are conflating nitrous oxide (laughing gas) with nitric oxide

You are right about that. I knew better but, oh well. This is why the forum is so useful. We check each other.

My source for what I shared is here:
https://biomesight.com/blog/ureanitric-oxide-cycle-disturbances

I haven't had the chance to chase everything down yet -- I filed this a while ago, but if it is wrong, that would be great to know. Thanks.

 

[SpinachHands]

Also, probably best to get that the brain MRI prior to spinal tap. Can the hospital administer a sedative prior to the MRI to make it more bearable for your partner?

Yeah they've offered to do a spinal tap if nothing comes up in the MRI or bloods. Unfortunately with the MCAS they are reacting to literally everything, so a sedative would be way too risky. Just going to wait on the bloods results first before we decide to go any further.