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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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  1. meeKO

    Worsening symptoms: Good or bad?

    "Isn't"? Yeah feels like consensus, if that's what you're saying @Valentijn .
  2. meeKO

    Worsening symptoms: Good or bad?

    Thanks for your take @Cheesus. Yeah I reckon you're right. We probably went to quickly with the dose size too... Good to hear your experience on this and I hope you're symptoms are manageable right now
  3. meeKO

    Worsening symptoms: Good or bad?

    Hi, It's been a long time since I posted. My wife's condition has only gotten worse. She can't move from the bed without help, can't even watch TV any more. All she can do is listen to talking books all day and eat a very limited range of food on repeat. We're very very desperate for something...
  4. meeKO

    Sleep and the drugs that stop working

    YES! My wife uses that on special occasions. A full dose knocks her out pretty much for 12 hours but yeah she's careful no to use much at all. She's on so many different sleep drugs (cycling) that avoiding tolerance is a crucial thing. Her sleep doctor also got her to be fitted with a dental...
  5. meeKO

    Been awhile. Condition still SNAFU

    Hi @Gingergrrl Good lord! What a nightmare this must be. So sorry to hear how hard it's been. Yes very helpful and much appreciated. My wife can't even read or write much at all so I know this is a big effort you and anyone who replies so I'm very grateful. I hope you stay on the improve...
  6. meeKO

    Been awhile. Condition still SNAFU

    How were you diagnosed for MCAS? Has any treatment helped since? How are you going these days? All our best.
  7. meeKO

    Been awhile. Condition still SNAFU

    Hi @Little Bluestem Thanks for the tip. We're giving her a nutritional supplement that contains lots of vitamins as well as feeding her lots of things she can tolerate and a few things that push the boundaries. Slow and steady though. Hoping to edge those scales up. Hope your Dad's doing better.
  8. meeKO

    Been awhile. Condition still SNAFU

    Thanks @redrachel76 I'm looking into getting some and trying it. Looks interesting so here's hoping it helps with some gut issues.
  9. meeKO

    Been awhile. Condition still SNAFU

    Hi @ggingues Yeah she has tried LDN. Sadly didn't do much. She can be sensitive but I don't think there were any problems with that. Yeah we've been trying alot of different sleep meds and clearly tolerance was going up so were trying to cycle afew and give this mouth splint thing a chance...
  10. meeKO

    Been awhile. Condition still SNAFU

    Hi @redrachel76 Whoa! Camel Milk. I know we have a lot of feral Camels in the outback roaming around so someone must milk them. And if it benefits us then all the better. I'll check that out. It sounds like it works wonders for you. She is of course lactose intolerant but it's not nearly as...
  11. meeKO

    Been awhile. Condition still SNAFU

    Hi @Hip . Gosh she's done so many tests I'll have to check. Thanks for the clue though, I will definitely chase it up. ;)
  12. meeKO

    Been awhile. Condition still SNAFU

    Thanks @worldbackwards . You're really reaffirming what she suspects/feels in her gut every day. It's true and she's very dilligent about sticking to it but I also like when she ventures tentatively out. Yes. Exactly this. Some things in the higher fat range are tolerable but it's pretty dicey.
  13. meeKO

    Been awhile. Condition still SNAFU

    Cool thanks @ScottTriGuy . Looks left field but that's probably a good thing 13 years in! Thanks for the kind words and congrats on your progress!
  14. meeKO

    Been awhile. Condition still SNAFU

    Thanks @Effi Yeah we're hoping for tangible progress this year. Just have to plot the course now. I know we'll get the weight back on cos she's a determined and stoic person. I honestly don't know how she, or any of you, keep it up. Reading some of the obituary pieces on the forum I realise...
  15. meeKO

    Been awhile. Condition still SNAFU

    Hi @lansbergen. No nothing particular like that. We definitely feed her a lot of eggs though. Trusty staple! YEah she swallows well. What was the immunomodulator you were taking?
  16. meeKO

    Been awhile. Condition still SNAFU

    Thanks for kind words @sarah darwins . I'm in Australia and I haven't looked in to any networks for carers but definitely a good idea. Thank you
  17. meeKO

    Been awhile. Condition still SNAFU

    Hi, I haven't posted for ages but it's a new year so for what it's worth: I post on behalf of my wife who is very ill. Her current state in brief- Can't be upright for more than 15 minutes Needs help standing to go to toilet and shower and then has to be in bed all day On heaps of Sleep...
  18. meeKO

    Deteriorated hugely over last 2 years. Any advice?

    Hi @Ben Howell I wish I could offer you some more direction for overall health but on the digestion side of things have you tried enzymes with ox bile? I get one for my wife who just can't eat anything it seems. I THINK it helps. think. GNLD Nutrionals Enzyme. All the other stuff we're still...
  19. meeKO

    Why taking glutamine can make your sleep worse

    Wow that article on Glutamate and the kindling and sensory overload stuff sounds exactly like what we've experienced. My wife has been prescribed L-Glutamine for leaky gut for a long time and after a break has gone back on it and recently her hypersensitivity and sleep have worsened... 'Scuse...
  20. meeKO

    FDA approves new type of sleep drug, Belsomra

    I've only just read afew of the posts here but it's all very interesting. Belsomra is just about to be made available here and we're kind of hanging our hopes on it abit. My Partner cycles through a ridiculous amount of sleep pills including high doses of melatonin and Seroquel every night and...
  21. meeKO

    Sleep and the drugs that stop working

    Yep. Inflammation in joints a problem. She's taking curcumin and looking into higher dose magnesium via nebuliser. I'll have to check out those other things. Thanks again for the clues!
  22. meeKO

    Sleep and the drugs that stop working

    Hey @geraldt52 us too man.
  23. meeKO

    Sleep and the drugs that stop working

    Thought I could sum it up better with this today
  24. meeKO

    Sleep and the drugs that stop working

    Are these prescription ones @heapsreal ? P.S. As you might have seen the cycling hasn't gone to plan and if anything all the stuff is working less!
  25. meeKO

    Sleep and the drugs that stop working

    Hi @geraldt52 , Oh poo. Well I'd still be interested in your findings. Keep us posted. ;) Yes let's avoid the MJ drugs !
  26. meeKO

    Sleep and the drugs that stop working

    Hi @snowathlete , Yeah limiting would be ideal but right now she can't get restful sleep even with a large dose of a or a combo of sleep meds. And once up it just gets harder to step down. So feeling kind of trapped. Nothing works for deep sleep any more. Yeah, trying that. Hoping it works...
  27. meeKO

    Sleep and the drugs that stop working

    Hi all, Just as an update; We visited a great Sleep specialist who didn't condescend to us or tell her it's all about sleep hygiene and meditation. He looked at the drug list and listened to us when we were asking for other options to ease off the current load. So in addition we're working in...
  28. meeKO

    Sleep and the drugs that stop working

    Hi @Andrew Thanks for weighing in. Yes stillnox is very rarely taken, same with valium but the other have been a help in the past. Yes indeed. This is what we're discovering from the good people on the PR forums. Thanks for confirming. Just have to get a couple more to start cycling... She...
  29. meeKO

    Sleep and the drugs that stop working

    Thanks @out2lunch Looks like a full on drug but we're off to see the clinical pharmacologist and BP specialist today so we'll get his take on it. Deep sleep is incredibly important so if something helps that and the fibro pain at the same time it's definitely worth a look. Glad it worked well...
  30. meeKO

    Sleep and the drugs that stop working

    Hi @out2lunch No we've never heard of that. I'll do some research now and see what it's about. Thanks!