JollyRoger
Senior Member
- Messages
- 138
Wow .... really cool.....
@ljimbo423 did you already try a fecal transplantation?
@ljimbo423 did you already try a fecal transplantation?
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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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did you already try a fecal transplantation?
@taniaaust1
What a thrilling Story!!!!
I admire you and your family - really!!!!
Did they make a brain spect?
If we have a damage then its there but I don't know if "hypoperfusion" is a damage or just a condition.
Every organ works fine.... that's the reason why the medicines say we are healthy
On the one hand it's encouraging on the other hand i wish they would find something.
I was diagnosed with ME/CFS in 2000. I was really sick couldn't work. The doctor wrote on my return to work sheet that
ME/CFS is indefinite. Than I improved enough where I went back to work. I was never able to stop struggling. Finally 2
years ago I really felt I couldn't do it anymore. Had to stop working completely over 1 yrs now. I tried everything, cutting my hours etc etc.
I think now recovery at this stage will be only minimal. Never give up hope Right? I'll take minimal.
Pen2
Full recovery is possible. I was literally on the far end of the disability spectrum for something like 8 years. Now I'm basically fit and healthy.
that's sad and the worst thing I think which can be done to us is to send us back to work while still ill as it only ends in disaster for us.
The less ill you are the more of chance of recovery I believe hence why its so important that we shouldnt push like this in the beginnings of this illness. Im sure I would of recovered and not ended up bed bound for the time I did had I'd not been pushing things but I didnt know any better so in my case kept trying to push myself through my studies... I cut back when I was "forced to do" by the illness but never cut back on the study load soon enough.
I have a sister who has this mildly and she wont rest properly and give herself a chance to heal either as she's in denial she could get worst so she wont listen to me. Im 80% sure that one day she's going to really regret this.
Dr.Davis/Dr.Naviaux once said that CFS is like a ON/OFF switch and after the application of the right drug everyone can be live a normal life.
On the other side you can read on the Nightingale page that it is an incurable disease with a permanent damage of the brain stem and only a few can expect a bit of improvement.
So which one is right?
I heard of so many people that improved but the majority never reached full energy.
Can we expect that Whitney Dafoe will make fotos of the Kilimanjaro one day?
What's your opinion?
I notice you're both male, whereas most sufferers are female. I wonder if men tend to recover more often?
I wonder if men tend to recover more often?
I don’t think those who say they’ve recovered had the same illness that the core PWCs have-&
I agree.Oh, they definitely do. I would recommend talking to people who have recovered, rather than simply assuming we didn't have the same illness.
I agree.
Also though I can understand the skepticism some may have about recovery.- when the rate of recov. is less than 5% and usually within the first year.
Recovery can be a dangerous word to some. Its because some have, only to be sliced down again in life with a return of ME.
Im one of them.
And I'm another one after almost 15 years remission. This thing is indeed a beast!I agree.
Also though I can understand the skepticism some may have about recovery.- when the rate of recov. is less than 5% and usually within the first year.
Recovery can be a dangerous word to some. Its because some have, only to be sliced down again in life with a return of ME.
Im one of them.