Why does my bedbound partner have PEM every day, despite doing nothing?

[SpinachHands]

They are 100% bedbound, and have done no activity in two months now. It's been a month since I was able to brush their teeth, and I was last able to change their pyjamas over a month ago. Apart from that they do absolutely nothing- I feed them liquid food through a straw, they use a bedpan and bed urinal with my assistance. They can just about roll over unassisted. They barely say more than a handful of words a day, and only open their eyes or take their sleep mask off if they need to press a call button for me.
But still, every single day they are wiped out by PEM. Usually it starts about 6-8 hours after waking up, but sometimes it's from the moment they wake up, and never goes away until they sleep.
They're getting consistent calories through the day, and usually sleep 6-8 hours. They're currently taking vitamin D twice a day, CoQ10 (100mg), B12, Omega 3, Magnesium and LDN (now up to 0.5mg). I've got NADH, D-Ribose, and L Carnitin being delivered soon to start taking too. I have a thyroid and antibody blood finger prick test that they can do as soon as they have a good morning, as well as a rapid iron test and a rapid vitamin D test that we'll also try.
I just can't figure out what it is that's causing the PEM, they could do this if it wasn't for that, but as it is they are really really struggling. I will take any and all suggestions or theories.
(Also I know I've posted a lot recently, I'm just really at the end of my rope and desperate for help, I appreciate each and every one of you that has helped so far. Even if I don't have the energy to reply I still read and take on board every comment)

 

[linusbert]

could be reaction to the food. maybe try elimination diet and different foods to see if this is the case.

could be anything. like smells and VOC, reactions to the building, to furniture. try to get rid of any smelly things like parfums, deos, detergents. wash cloth with a 5% dilluted vinegard solution. same for dish.

does his symptoms intensify after putting on fresh new cloth? or fresh new bed sheets? than washing detergens.

of course the supplements by itself can cause this too. maybe try to leave them out a few days.

my tip is on environmental toxins / smells etc. or food.

 

[godlovesatrier]

Because simply breathing, thinking, being alert enough to hold a conversation and deal with sound is enough to cause them PEM.

Severe bedridden patients react to everything and now that I have sound sensitivity I have some mild understanding of what it's like, but to have severe sound sensitivity must be hell quite frankly. Not suggesting your partner has that tho they may have any number of issues that cause problems. Hyper active nervous system dysfucntion would be equally debilitating without any sound sensitivity.

As linus says food reactions could be doing it too, I used to react to gluten, sugar and dairy. Pre covid I reacted to none of these for about 18 months. Post covid I react to dairy and sugar again, but gluten seems tolerable. At one time gluten would cause physical fatigue.

As you're in the UK I would highly suggest you try to see Dr Claire Taylor (https://www.drclairetaylor.com/about) (£300 for initial consultation) she's an amazing dr who treats LC and ME patients and can recommend medications for dysautonomia POTS + she may be able to teat some other comorbidities. Dr Claire Taylor believes that almost all people have some type of mild dysautonomia but that in ME and LC we become acutely aware we have it. So even if your partner only gets dizzy on standing (I mean if they don't have pots specifically) then they could still have pots, that is what Claire is saying and I personally think she's onto something. She's a neuro scientist so has a specialism in this area.

For antiviral medication if Claire can't help you need to see Dr Bansal (he's about £250 but has a 12 month waiting list, he can help with insurance claims and work based adjustments for those still in work) by calling Spire Bushey hospital - if you have any issues getting through to the right people please message me. Dr Bansal can prescribe low dose abilify for your partner (might get them a few hours of normality a day if it works, you'd have to try it and see), low dose naltrexone, valtrex. Almost all of us have reactivated viruses, so Dr Bansal can prescribe valtrex, this may just give your partner a small boost, but every little helps.

In my expeirnee you can use as many supps as you want but only meds will get you reliable gains. Valtrex and low dose doxcycyline are what I currently take. They both help a lot.

good luck!

 

[godlovesatrier]

My Dr also gave me low dose mirtazapine for sleep, some people find they only need 5mg (please take lowe doses first) to aid sleep. It's a non addictive drug and it's not a benzo. So whilst 15mg made me a zombie for about 2 days, 5mg just gave me a little shift into sleep.

Dr Myhill recommends amitryptaline for anxiety and it also helps with sleep: https://drmyhill.co.uk/wiki/Using_antidepressants_in_CFS (don't worry about the antidepressant/depression bit, mostly giving you this because of the doses so you can speak to her dr about getting it for anxiety and sleep). Whilst your partner may not have anxiety our HPA axis are normally very badly broken because of how sick we are, so any drug to help calm that down will help.

Mirtazapine can do the anti anxiety thing as well but only at higher doses, I wouldn't recommend it tho as it will prob crash your partner. As ever go slow with any new meds.

 

[lyran]

I'm in constant PEM mode if I don't take LDN 2-3 times a week in the evening. Otherwise my endorphin (beta-endorphins, enkephalins) levels go so low that I'm unable to function at all. Some others may have this same issue.

 

[SpinachHands]

could be reaction to the food. maybe try elimination diet and different foods to see if this is the case.

could be anything. like smells and VOC, reactions to the building, to furniture. try to get rid of any smelly things like parfums, deos, detergents. wash cloth with a 5% dilluted vinegard solution. same for dish.

does his symptoms intensify after putting on fresh new cloth? or fresh new bed sheets? than washing detergens.

of course the supplements by itself can cause this too. maybe try to leave them out a few days.

my tip is on environmental toxins / smells etc. or food.

I've been wondering if it could be food, especially where I'm giving them pretty much the same things at the same times every day. Will give it a go and see if anything changes!
They don't have a smell sensitivity really, and haven't been well enough for clean clothes, sheets, or bed baths so won't be that. We have a dehumidifier and air purifier running constantly too (our house has mold issues sadly) so hoping they're keeping any toxins at bay. Wish we could move them to a better environment but that'll have to wait until they can move unfortunately, trying my best to keep everything that I can very clean and hygienic.

 

[SpinachHands]

Because simply breathing, thinking, being alert enough to hold a conversation and deal with sound is enough to cause them PEM.

Severe bedridden patients react to everything and now that I have sound sensitivity I have some mild understanding of what it's like, but to have severe sound sensitivity must be hell quite frankly. Not suggesting your partner has that tho they may have any number of issues that cause problems. Hyper active nervous system dysfucntion would be equally debilitating without any sound sensitivity.

As linus says food reactions could be doing it too, I used to react to gluten, sugar and dairy. Pre covid I reacted to none of these for about 18 months. Post covid I react to dairy and sugar again, but gluten seems tolerable. At one time gluten would cause physical fatigue.

As you're in the UK I would highly suggest you try to see Dr Claire Taylor (https://www.drclairetaylor.com/about) (£300 for initial consultation) she's an amazing dr who treats LC and ME patients and can recommend medications for dysautonomia POTS + she may be able to teat some other comorbidities. Dr Claire Taylor believes that almost all people have some type of mild dysautonomia but that in ME and LC we become acutely aware we have it. So even if your partner only gets dizzy on standing (I mean if they don't have pots specifically) then they could still have pots, that is what Claire is saying and I personally think she's onto something. She's a neuro scientist so has a specialism in this area.

For antiviral medication if Claire can't help you need to see Dr Bansal (he's about £250 but has a 12 month waiting list, he can help with insurance claims and work based adjustments for those still in work) by calling Spire Bushey hospital - if you have any issues getting through to the right people please message me. Dr Bansal can prescribe low dose abilify for your partner (might get them a few hours of normality a day if it works, you'd have to try it and see), low dose naltrexone, valtrex. Almost all of us have reactivated viruses, so Dr Bansal can prescribe valtrex, this may just give your partner a small boost, but every little helps.

In my expeirnee you can use as many supps as you want but only meds will get you reliable gains. Valtrex and low dose doxcycyline are what I currently take. They both help a lot.

good luck!

I was worried that it could just be the effort of being awake at this severity...my fear then is how they can escape that cycle. Medicine is something I'm really hoping will give them the leg up they need (I heard someone say that supplements are no help if there's something underlying, it's like putting fuel in a car with no wheels!). I have been looking at antivirals, the tests to look at what infections they may have would be too strenuous for them I think, so an empirical approach of just picking an antiviral and trying it might have to be best. I have a friend who can get me Valtrex (semi legitimately) as we really can't wait the months it would take to see Dr Bansal. I have been looking into Dr Claire Taylor too, I only found out about her very recently, wish I had heard of her months ago! But her wait list does seem shorter than many thankfully, so could be worth a try.

 

[SpinachHands]

I'm in constant PEM mode if I don't take LDN 2-3 times a week in the evening. Otherwise my endorphin (beta-endorphins, enkephalins) levels go so low that I'm unable to function at all. Some others may have this same issue.

My partner is on 0.5mg in the morning daily now. Only been on LDN a few weeks (titrating up from 0.1mg) so haven't seen any positive effects so far, but still very hopeful! Is there a reason you take it in the evening? I've heard it makes some people drowsy, but I've been giving it to them first thing in the morning just as that seems to be the standard recommendation

 

[hapl808]

We have a dehumidifier and air purifier running constantly too (our house has mold issues sadly) so hoping they're keeping any toxins at bay. Wish we could move them to a better environment but that'll have to wait until they can move unfortunately, trying my best to keep everything that I can very clean and hygienic.

I went through some of this - it's incredibly hard if there might be mold or environmental issues, but you're not well enough to move.

It sounds like you're doing what you can, but you may want to focus on that rather than just supplements. However, this is very difficult because any change you make can improve things or make them worse - and if your partner isn't well enough to participate in the decision, I don't know what to suggest. That said, try to keep things as clean as possible, and before jumping to antivirals, you could look at more mild natural antivirals and antifungals. Be careful because these can all be hard on the system especially if they can't eat solid food, but people have good results with: allicin, monolaurin, oregano oil, etc.

Maybe others will have ideas, because all of those are likely too strong to start when on a liquid diet without some real planning.

 

[Wishful]

It might not be PEM. I have baseline symptoms without PEM, and my PEM was a worsening of those symptoms. PEM is "post-exertional", so if the symptoms are there without exertion, can it really be described as PEM?

If you don't fixate on "PEM treatments", you can explore other possibilities. There could be something in the food or the environment that makes the symptoms more severe than they otherwise would be. Last year I somehow lost a critical bacterial population from my colon, and spent a year feeling much worse and intolerant of fermentable fibre, but a simgle capsule of probiotics fixed the problem. I'm not suggesting that probiotics will solve anyone else's problem, but there could be some factor that is keeping some people worse than they otherwise would be. Maybe a chronic infection, maybe a lack of some important microbe, maybe an inability to process a nutrient properly. Finding that factor may be difficult, but it's even more difficult if you fixate on one unproven diagnosis.

 

[linusbert]

We have a dehumidifier and air purifier running constantly too (our house has mold issues sadly) so hoping they're keeping any toxins at bay.

daaamn thats a big factor. try now in summer move him out in a tent or something and see if this gives improvement. if thats a possibility. the mold situation really needs to be fixed. there are also room UVB lights which disinfect anything they shine on. BUT i dont know if this is helpful for mold.

the thing is, some folks here can get sick alone from the air ventilation devices. for various reasons. i only tolerate 1-2 brands of all those i tested. others i dont.
i dont tolerate those active charcoal filters they use to filter VOCs. BUT for mold you dont need those anyways so try to only use a HEPA filter. as this is what filters the mold spores.
also some cheap filters can use materials which offgase and can cause symptoms.. also some chinese devices can use bad fire protection coatings.


but the timing of his worsening over day makes me suspicious, because he seams to start ok'ish and then gets worse after 8 hours. that could of course be exhaustion, or something done earlier the day which caused this.
many i read here have it the other way around, they start like crap and get more fit over the day.
you might try some good clean sodium-ascorbate , it strengthens the adrenalglands which might help him. maybe start low with 3x200mg.. or 3x500mg.. or even 3x1000mg , but careful. prolonged high dose vitamin C can cause kidney stones through oxalate for sensitive folks. so something around 500mg/d should be safe for most. (BUUUUT some might need those extra vitamin C so multiple times 1g a day might be needed for those. need to try). try not to get chinese crap btw.

if its for food and he can tolerate, you might try eggYOLKS separated from the white.
or might be worth to try carnivore / lion diet for a time, this eliminates plant toxins as cause. but there is no one size fits all diet. some do better on meat, some on everything but meat. some need carbs, some dont but go well on fats and proteins. some cant do proteins. its annoying to find out!

(I heard someone say that supplements are no help if there's something underlying

this is wrong information. for most folks, supplements can be of some or no help... depends. but for some it can make a difference between light and day if you have certain genetic conditions a supplement can be used as therapeutic (not to fix deficiency but) to bridge a metabolic defect.
have a look at chris masterjohns blog. he is researching in this field. which good success on himself.
those compounds can be B2, Biotin, Q10, carnitine, B1, vitamin C and others. methylene blue also.
but its always a individual thing, for some it can be a life safer, for others destruction. you can only try, carefully.

 

[Wishful]

i dont tolerate those active charcoal filters they use to filter VOCs.

I recently read a news story about a technique for turning sewage into "high-value activated carbon".
Do they think people will accept burnt sewage for facemasks or water filters? Would you?

 

[linusbert]

I recently read a news story about a technique for turning sewage into "high-value activated carbon".
Do they think people will accept burnt sewage for facemasks or water filters? Would you?

sounds awesome. eating bugs and sniff their arses.
cant imagine those will be free of any leftovers of medications and pesticides. LSD trip for free.

 

[hapl808]

Do they think people will accept burnt sewage for facemasks or water filters?

The past few years have shown me people will accept anything if it's presented in the right way. The whole 'cloth mask' thing when a simple surgical mask is cheap, many times more effective, easier to breathe and talk through, more comfortable, etc. But they convinced people to wear cloth masks and launder them.

Same security theater like taking off your shoes at an airport to make you feel safe, but effectively do nothing.

 

[lyran]

Is there a reason you take it in the evening? I've heard it makes some people drowsy, but I've been giving it to them first thing in the morning just as that seems to be the standard recommendation

Our brain secretes more endorphin hormones during the night and LDN potentiates this. You can take it in the morning but I haven't found it being that potent or long lasting if I take it that way. One minus is that it messes up my sleep somewhat.