Discussion in 'General ME/CFS Discussion' started by lnester7, Aug 11, 2017 at 8:24 PM.
i always wonder if I will end like this.
I always hope that I have just MCAS and heavy metal toxcity alongside with fungal infections and lyme and some other bacterias and not the real deal cfs.....
i mean no one in this condition will ever be on PR.
So are they always like this? Or is this some kind of end stage that appears after beeing ill a few years?
Very difficult to watch. Many more people need to see this to fully appreciate the depth of suffering and the urgency for more research funding and hope for future treatments. I wish I didn't know anything about this living hell, but I've had my own taste of it. Thankfully not as bad off as those in the video. For now at least.
Such strong souls they are. I can't imagine how it would be to lie down in a pitchdark room for years and years and even losing the ability to have thoughts. I've endured some desperate times but nothing like that.
Did anyone catch the SCIG (gammaglobulin) dose the girl was taking?
wow,this is insane, is the definition of hell..how can someone be so sick without medical findings?! It seems like you are in a terminal stage cancer state without diying and go like this for decades.this is the devil on earth!..I am so sorry for this people,makes feel my symptoms a walk in a park..
Understand now why you were warned not to overdo?
yes..i definatelly understand! i was playing with fire. i get burned but fortunatelly not his bad
Not everyone ends up this severe BUT it highlights the importance of managing the condition as best you can.
Some unlucky souls will end up this way no matter what, but others through lack of knowledge and bad medical advice end up much sicker than they otherwise would have.
ME is a condition to be taken very seriously.
Here is a clip from a Norwegian news piece and interview of the 3 M.E. siblings shown in the documentary.
3 siblings getting sick in diferrent times..it kinda suggest a genetic predisposition aswell..
I don't get this certainty about recovery in the Norwegian video. I am not aware of figures that support this.
I know those who are most likely to recover will recover in the first year and after 5 years the chances of recovery are currently low (not impossible).
While the need for hope is completely understandable, looking back, I think it undermined my efforts at managing my condition. I would always find myself trying to do that little bit more & end up setting myself back.
I was curious about this as well and if her recovery is attributed to the SCIG or other factors? My screen kept freezing while trying to watch the video so I missed parts of it.
Sorry for my confusion, but do you mean that having hope undermined your condition itself and made your symptoms worse or that putting hope in a specific treatment made you feel more hopeless if the treatment did not work?
Sorry @ Gingergrrl I guess I could have been clearer.
In the absence of any specific / realistic treatment and while struggling to understand the condition, confident assertions by medics that most people recover eventually, left me with the underlying impression that most people would simply recover with time.
Therefore as soon as I seemed to improve a bit I thought maybe this was the "recovery". I then increased my activity levels. I was unaware that ME could be remitting/relapsing and of course other triggers like catching a cold can set me back.
So I have slowly become worse over the years because in the early years I just thought that sooner or later, with time, I would get better. So managing the condition was just about pacing to try to control day to day symptoms rather than the long term picture.
It was misplaced hope. I still have /need hope but I am now realistic. I hope we'll get some answers through decent research one of these days. I accept my conditions is as it is and that I have to live my life a certain way & stop pressuring myself.
Although I have hope, it is more realistic and these days I understand that if that hope is to bear fruit I will have to do what I can to push for decent biomedical research and treatments. Not push myself physically.
I may have watched a different film.
What I saw was a boy/man who despite an apparently supportive state, knowledgable and supportive family and access to treatments/drugs I can only dream of didn't get any better in the best part of a decade.
And a girl/woman who despite long years of being bed bound, eventually recovers enough so she can walk outside barefoot in the grass, and then risks it all, and is apparently encouraged to do so, by riding a bike, with a large trailer, up a hill for the benefit of the camera.
TBH I wasn't sure what to make of it at all.
Thanks @Invisible Woman and that makes sense. My illness has not been relapsing-remitting whatsoever and initially I tried random treatments and then lost hope when they did not work (or even made me worse).
But then when I figured out some treatments that have actually helped me starting with moving away from mold, MCAS treatments, IVIG, etc, (which I know are different for each person), it has brought me real hope.
I agree and found that scene very strange both that her family and doctors would allow her to do such a physically demanding task after being bed-bound for six years AND that she actually was able to do it. I am thrilled currently that I can take a shower, wash dishes, and do laundry on my own. Driving a bike uphill while pulling a heavy trailer is beyond what I could have done before I got sick!!!
i'm very happy for her,but it seems a little bit dodgy, she can talk while riding the bike,so is in the comfort zone of exercise..from years of being confine to bed to be able to do that it's impresive if it's true..human body it's unpredictable after all,everything is posible..
Thanks for that. It was very sobering to recall 22 hours asleep and too dizzy to stand. What fantastic mums! Watching Bjorn get a haircut was pitiful. thanks again
@Gingergrrl Can you explain more about how your doctor concluded that IVIG would be an appropriate treatment, and for which condition? It's for the MCAS right?
I'm actually at IVIG now in the final 30 min of this 3-day cycle . In my case, my main doctor wanted me to try high dose IVIG for autoimmunity once it was discovered I had multiple autoantibodies including one that blocks the calcium channel. My MCAS doc felt it would also improve my MCAS and both were in complete agreement.
I started IVIG in July 2016 and it's now been 13 months. I started low dose, then in Oct 2016 went to a moderate dose, and then in Dec through the present I have done high dose to knock down the autoantibodies. But they are "re-stocked" by the B-Cells which is why both of my docs felt I would be a good candidate for Rituximab.
Edit: They felt I'd be a good candidate b/c I have had such a positive response to high dose IVIG.
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