So many severe symptoms, WHAT is going on??

[SpinachHands]

We are at an absolute wits end, and are exploring all possible pathways, because nothing my partner is experiencing seems "normal" or typical for the disorders we know they have. We don't know what kind of doctors to go to, what tests we should be looking at, what symptoms go together. Any ideas??

Symptoms:
- severe stomach pain, especially after eating/drinking
- painful burping/retching (especially after eating/drinking)
- a feeling of widespread inflammation, feeling like they're "swelling up" (no visible swelling, redness, rashes, etc)
- severe neurological symptoms: uncontrollable rage, anger, aggression (screaming, throwing things, hitting themselves)
- severe brainfog, literally having no ability to think, no internal monologue, difficulty with all memory, recall, forgetting words
- episodes of paralysis, from difficulty moving, to being fully unable to move, only slight finger movement, talking through unmoving jaw, blinking
- reactivity to everything "going in", water, fluid, food, IV, medicines
- internal feeling of fizzing/vibrating/skin rippling
- severe head pain/a feeling of intense swollen pressure in the head that makes them unable to think, crushing pain in the sinuses and face

Investigations:
- cortisol low normal
- thyroid ok
- metabolomix full nutrient/vitamin/fatty acids profile ok
- gut profile bad, likely SIBO
- head CT ok
- EEG ok
- ECG ok
- MRI in 2 weeks
- encephalitis blood tests waiting for results

I can't really remember what else. They were recently in hospital for 10 days following severe dehydration and malnutrition because their MCAS (we're assuming) got so bad they were getting paralysed every time they drank water or had any kind of food. This stopped happening in hosp but has gotten bad again since being back so for sure there is a mold/damp issues in the house (have been doing viewings all week to try and get us out of here).

But their dysautonomia started getting bad again in the hospital, and it had been getting slowly better for ages. They started using their phone again in hospital so could be their nervous system is exhausted from overexertion? And it's their ME level getting worse? But they can't rest because every time they close their eyes and do nothing they say it's like their body and brain start swelling up and fizzing.

The gastro we spoke to recently things hypermobility has caused poor gut motility, which may be affecting the mast cells, the nervous system, etc. But idk, it really feels like there's something else very very wrong that we're missing. I cannot find anyone with MCAS who gets so bad they are paralysed and react to water and IVs, but then don't get anaphylaxis or skin issues. I can't find anyone with dysautonomia who goes so insane with adrenaline they punch themselves in the head in a rage, or have their body fully switch off and become unable to move or think.

There's too many puzzle pieces, are we missing anything or is it really just this bad? They just have a super severe version of everything??

 

[andyguitar]

- severe stomach pain, especially after eating/drinking
- painful burping/retching (especially after eating/drinking)

Acid reflux perhaps? Can be helped by raising the head end of the bed up a little.

They started using their phone again in hospital so could be their nervous system is exhausted from overexertion?

Yes it could be that.

 

[katabasis]

How horrible, I really feel for what you two are going through. I've been following this whole saga for the past few weeks and it sounds like a total nightmare.

My first thought, looking at the whole picture as you've presented it, is that a lot of these symptoms could probably be simply chalked up to very severe ME/CFS. I know you probably don't want to hear that, since ME/CFS is not a very actionable diagnosis, but I think it's important to consider this possibility because it will hopefully allow you to hone in on and actually deal with whatever *isn't* the ME/CFS.

I have severe ME/CFS (not 'very severe' - I can still get up and go to the bathroom, for instance, and clearly my brain is working well enough to type this, though it's not something I can do every day or for very long on a given day). One thing people without ME/CFS don't always understand - and what *you* may not understand, if not simply because many people with ME/CFS often fail to broadcast this aspect of their experience, is what an absolute mind-fuck this illness is. I am constantly bombarded with a huge array of strange and unpleasant sensations (physical and mental) that make no medical sense when looked at conventionally, and are very difficult to describe precisely.

Aggression and rage are not usually considered typical ME/CFS symptoms, but frankly they're not far off from the increased frustration and irritability that the majority of ME/CFS patients endure. The sensory sentivity and physical pain of severe ME/CFS, combined with a lack of ability to effectively manage one's environment is a recipe for this sort of thing. There are times where I want hurl my phone across the room if I accidentally tap on the wrong app or something - because it takes so much mental energy to navigate what I'm doing. that something going wrong (requiring me to spend now even more mental energy) feels catastrophic. But I guess my brain fog is not bad enough to completely rob me of the executive function that allows me to suppress acting on this irritability. So is your partner's aggression neurological? Well, maybe - you can't write off that possibility entirely. But also, maybe not.

Likewise the paralysis, which is something that's easy to construe as neurological. In fact it might just be part of the experience of severe PEM. The feeling of PEM, to me, manifests as a weird internal resistance to movement, kind of like how people sometimes describe trying to run or punch in a dream. It reminds me a bit of subjective descriptions of Parkinson's disease symptoms, a feeling of alternate pressure to move and resistance against movement - one patient eloquently described this as 'the goad and the halter'. For me, it's more 'halter'. When I wake up in the morning, I often find myself semi-paralyzed - once I manage to move around a bit, the feeling goes away, but it's incredibly difficult to work past the feeling, the painfully leaden weight in my limbs. I could easily imagine PEM that is severe enough where this difficulty becomes an impossibility. So I don't think you should take these symptoms to necessarily be neurological, when it could just as easily be a natural result of the severe metabolic deficits of ME/CFS.

The feeling of fizzling or vibrating is something actually quite a few people with ME/CFS report experiencing. I think it's possible this is related to dysfunction of small fiber nerves, and a lot of people with ME/CFS (including myself!) test positive for small fiber neuropathy. This is treatable with IVIG, but it seems like it tends to mostly help overt nerve pain without really doing much for other, more ambiguous ME/CFS symptoms. Still, this could be something to look into. IVIG is actually helpful for a lot of different illnesses, kind of a scattershot approach, though it can be hard to tolerate so it may not be worth the risk for your partner.

I think the more promising angles on this situation are to look at the gastrointestinal problems or the headache. Headache is not uncommon in ME/CFS, but when it is so severe, with such specific presentation (sinus/facial pain) it might point towards something else. Migraine, facial neuralgia, and sinus inflammation are all possibilities - a neurologist would be able to help assess the first two options.

The gastrointestinal problems are also more severe than what you'd typically see in ME/CFS. Stomach pain and burping/retching both point towards stomach dysmotility or outright gastroparesis. Small fiber neuropathy can contribute to motility issues so again, that may be worth testing for. But other forms of autonomic neuropathy can contribute - in any case, a GI doctor would be able to assess. Treatment could range from vagus nerve stimulation to pharmacotherapy, such as prucalopride or metaclopramide. It seems all the more possible to be a motility issue if you're already considering SIBO, which may also result from motility issues.

In the short term, it might be best to try and find a way to treat the extreme sensitivity and fatigue. I know that benzodiazepines are best avoided for many due to tolerance issues, but since you're in dire straits, lorazepam or clonazepam both seem to dramatically help ME/CFS symptoms for many. If not just to help assess which symptoms are due to ME/CFS and which are not. I don't recall you mentioning whether your partner has tried benzodiazepines before.

 

[SpinachHands]

Likewise the paralysis, which is something that's easy to construe as neurological. In fact it might just be part of the experience of severe PEM.

Thanks so much for your reply, lot to look into here! Sorry I wasn't clear, but just to clarify, the paralysis is happening in reaction to having food/fluid/medicines/IVs. So literally within minutes of drinking water, or having an IV put in, having food, any of their usual meds, they stop being able to move their limbs, go limp, often can't speak or open their eyes. It can last minutes or over an hour. This is a very distinct and different feeling to when they have PEM, which they're very familiar with.

Also sorry, I should have been clearer, their condition- their ME- has been improving over all this time. They can often talk to me for upward of an hour before they even start to feel any fatigue, they managed ten days in hospital with constant nurses coming in, blood tests, being moved around, without PEM being triggered. They can play music now, listen to audio books, use their phone, they have so much more energy than even before they became bedbound. Whatever has been happening with these symptoms is separate and distinct from their ME, which has been getting better as these problems have been getting worse.

The feeling of inflammation, swelling up, the head pressure, paralysis, stomach pain- they didn't have any of these issues up until quite recently, even when their ME was much worse a year ago.

 

[Violeta]

Can you get to a homeopath? It sounds like symptoms related to the remedy phosphorus.

http://www.homeoint.org/books/boericmm/p/phos.htm

 

[katabasis]

Sorry I wasn't clear, but just to clarify, the paralysis is happening in reaction to having food/fluid/medicines/IVs. So literally within minutes of drinking water, or having an IV put in, having food, any of their usual meds, they stop being able to move their limbs, go limp, often can't speak or open their eyes. It can last minutes or over an hour. This is a very distinct and different feeling to when they have PEM, which they're very familiar with.

Sorry, seems like I didn't understand the particulars of the situation, thanks for filling me in. I guess have a few questions about this - to begin with, when this paralysis occurs, how is your partner's mental state? Afterwards, do they report that they were fully conscious/alert during the episode? Or do they feel sleepy/sedated? Worse brain fog? Unconsciousness? And then, assuming their mental state isn't too impaired for this, during an episode, what happens if they try to move? Can they move their limbs a very small amount or not at all? Do they feel that certain parts of their body are less affected than others? And when they come out of this state, is it gradual or sudden?

Separately, what happens to their vitals during an episode? Does their blood pressure or heart rate change noticeably? Breathing rate? Is their pupillary reflex impaired? How about their patellar reflex? Do they appear pale or flushed? Any other visible signs?

Edit: come to think of it, another question is: are there any other triggers for this reaction, or just what you listed? I was thinking about whether maybe it's some reaction mediated by baroreceptors or mechanoreceptors, which might be activated by changes in blood volume or by things physically entering the gut. But if so, you might be able to test whether a similar response occurs by mechanically activating baroreceptors (by bearing down to provoke a vagal reaction) or by physically pressing on the stomach (such as what you'd do for the Heimlich maneuver). Obviously it's unpleasant to provoke these symptoms, but it might help identify the distal cause of the reaction.

 

[Seadragon]

Are all the symptoms you describe worse since they got home from the hospital?

I do think getting out of the moldy house sounds urgent (not easy I know).

I wonder if this is some sort of (extreme) systemic allergic reaction to the mold, perhaps triggered by either their ME or the initial infection that caused their ME.

@SpinachHands

 

[vision blue]

Rule out

Encephalitis
C-diff infection
Anti nmda receptors antibodies
Incresed intracranial pressure
Pheochromocytoma

Also Test
eosinophils
Tryptase
Metenephrines- urine and blood
OAT (organic acid test)-urinr
Abdominal ultrasound
17 oh progesterone
SIBO
Comprehensive stool analysis
Giardia
Zomulin??

Can you in meantime stabilize mast cells
until find out whats making them go berserk?
Hopefully its as simple as sone gi pathogen and the mast cells are reacting

(I am in crisis myself and just posted. Not sure if getting heart attack)

 

[linusbert]

most important thing is to get your partner out. do you have a affordable motel/hotel or something you can check in?
the fact that your partner got better in hospital shows that the body will regenerate when offending issue is gone which seams to be environmental.
if you do not find a place to stay, you might try to submit your partner to a psychiatric/psychosomatic institution, thats what they like to do in germany with people when they do not exactly know whats going on, but a stay at home is hardly possible - because hospitals do not like to take up people, also to do continued diagnostics. but not on the premise of psychiatric disease, but on the premise of the person quickly needs to be in a different place and maybe gets somewhat medical attention and assistance.


also you reported heavy medications you took in the past which have massive withdrawal symptoms.
when a normal person gets withdrawal from such things you can expect a person with cfs which has reduced ability to cope with system changes, to really be crushed on top of withdrawal.
neurotransmitters being whack can cause movement issues, like dopamin/serotonin.

i have a theory - no medical advice, probably not medical sound:
1. Serotonin Reuptake Inhibitors (SRIs, e.g., SSRIs and SNRIs) increase the amount of serotonin available in the synaptic cleft by blocking its reuptake. This leads to an overall increase in serotonergic activity.


2. Receptor Regulation: The body adapts to the increased serotonin by downregulating (reducing the number or sensitivity of) serotonin receptors over time. This is a form of homeostatic adjustment, similar to how insulin resistance develops in response to chronically high insulin levels.


3. Withdrawal Effects: When the serotonin reuptake inhibitor is discontinued, there is suddenly less serotonin available, but the receptors are still in a downregulated state. This can lead to withdrawal symptoms because there is both less serotonin and fewer receptors to detect and respond to it.


4. Receptor Upregulation: In a healthy individual, the body usually compensates by upregulating serotonin receptors over time to restore balance. This process can take days to weeks.


5. Challenges in Chronic Illness: If a person has low energy availability (ATP production issues) or lacks necessary cofactors (e.g., vitamins, minerals needed for neurotransmitter synthesis and receptor regulation), this adaptive upregulation might be impaired. As a result, serotonin levels remain low, and receptor sensitivity stays reduced. This could contribute to persistent low mood, fatigue, and neurological symptoms, potentially creating a downward spiral.

 

[vision blue]

The serotonin suggestions excellent. I missed mention of earlier being on meds. Ditto escaping house somehow

 

[linusbert]

you might try L-Dopa maybe, if it works, this would confirm the theory. But always with doctor.
Bananas got lots of Dopamin too.