Full recovery- is it possible???

Full recovery for everyone - is it possible?

  • Yes

    Votes: 24 40.0%
  • No

    Votes: 6 10.0%
  • Improvement YES - but not a 100%

    Votes: 30 50.0%

  • Total voters
    60

taniaaust1

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recovery is possible at the moment for some, but many people I have spoken to have, like me, recovered when younger only to relapse harder years later and become permanently more ill.

I had a remission to near normal for around 9 years and didn't know I could get sick again. There are a large group of us like this on PR.

So, even if Navieux can switch something off, im not convinced it wont switch on again.

Final edit to say I WISH I had palliative care, or any care at this stage.
i was illner first time round with this illness.. even though Im very ill with it now (I only got out of hospital again due to it yesterday I think it was, had to spend overnight there on a drip after 3 collapses and a seizure) it is nowhere near as bad as it was first time around (after about having this illness for only about 9-12mths). I dont get a lot of the symptoms I got when I had it the first time.

I think the only reason I arent as bad as I was first time round is cause I know not to push myself! so I take great care to try to avoid any crashing. I believe have a strong potential otherwise to end up as sick and possibly this time dying if I get that bad again. With knowing how bad oneself can get with this disease, is the scariest thing.
 

JollyRoger

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@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.
 

Mij

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I was with Dr Hyde this week and he told me that I could expect a slow improvement over a period of 10 years, if I don't get infected again.
Was this your case in particular? Do you know what he based this on?

I was diagnosed by his partner 25yrs ago and was told I would improve and possibly recover in 5 years based on his assessment of my case.
 

taniaaust1

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@justy what was your activity level at the first time of the disease?
How did you recovered?.
I know u asked another the question but for me it was with Aggressive rest therapy. I accepted I would die cause I was so bad with the illness.. so stopped stressing about potentially dying.. and then as a consequence of being okay about dying I stopped even trying to keep myself awake for 20-30mins per day to eat and drink. That then stopped me needing to go to the potty by the bed once a day too. So in doing this, I actually was conserving the only energy I had to do anything. (I think I got to the point where I was then using my bowels only about once a fortnight). I do not recommend anyone doing what I did, I know I must of been very close to death.

So I was going 3 day periods of just laying eyes shut and sleeping as a coma person would do (before this I was actually having comatose periods for many days at a time without waking and I was aware when I came out of a period like this.. I was able to do something small eg sit up for a few minutes, so figured doing nothing at all was helpful to my condition even if it was a drastic thing to be doing nothing. I was going days without even drinking at times...it was either going to die or survive).

Cause my ME was so bad, I had come to the realisation that EVERYTHING I actively did was making me worst and my stopping bothering to push myself to eat or drink was my reaction to that.

After many months of I was able to start eating a couple of times per day in bed and drink when I needed too without over extending my energy. .. then after some months more, I finally started to have more energy to do something else. but I kept myself laying in bed and didnt waste any energy trying to listen to radio or watch TV. (I probably layed in bed in silence for about nearly a year doing near nothing, TV was too much for me anyway).

I slowly extended what I was doing as my energy improved, keeping myself in check.. forcing myself to take naps even when I didnt feel like I needed them any more, keeping things still and quiet around me etc etc. It was a mammoth effort to recover and I could of never did it if I didnt have my 10? year old daughter looking after me and a friend who would shop for us and leave the shopping at door for daughter to put away etc.

fully bedbound for 9 months (no choice with that, I just couldnt walk near most of that time). them further stayed in bed for longer .. my choice to try to recover some as doing nothing was the only thing which helped me (I must of spend most of 2? years, it may of been 3? in bed). VERY slowly doing more as I improved when I truely felt some energy there that I could do then without paybacks.

My recovery was due to me doing everything I possibly could do to try to avoid crashing..and hence then allowing myself to instead get better and better. It took YEARS...

Ive heard from quite a few others over the years who also recovered with aggressive rest therapy. (Im not suggesting anyone to cut back to the degree I did, I was at risk of dying but my ME was so bad that was at risk of it killing me anyway)
 
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JollyRoger

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@taniaaust1 that's definitly the only possibility to get back into live....

Do you think you will reach the 100% again with your method?

What was the cause? A sore throat?
 

Pen2

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It's really hard to tell even if you exactly know what is wrong with you. I think most don't exactly know what the problem is, this is also a fact for me. It's a trial and error thing. When you supplement A in high doses, feel better but after some time B gets low because of high A supplementation. It's sometimes a trap, a vicious cycle. I never give up, i search, research, read stuff, try and stop, maybe i will reach one day my goal. We have only this one life. And if i fail i tried hard at least. I know it's hard to stay optimistic but i can reach 2 good days per week when i'm disciplinated. 2 good days is better then nothing.
 

Dechi

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Was this your case in particular? Do you know what he based this on?

I was diagnosed by his partner 25yrs ago and was told I would improve and possibly recover in 5 years based on his assessment of my case.
He was talking in general, for moderate cases such as mine, based on his analysis of my Spect scan and his 30 years of experience.
 

Pen2

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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
 

JollyRoger

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AT first When I read hypoperfusion I thought I have to die.
Then I searched for other reasons and find causes like depression, anorexia, IBS and POTS.
The only unique pattern is the hypoperfusion of the Brain stem.
 

taniaaust1

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@taniaaust1 that's definitly the only possibility to get back into live....

Do you think you will reach the 100% again with your method?
I dont know.

I'd like to be able to try aggressive rest therapy again to see if I could recover again but unfortuantly arent in the situation where I could do unless I put my life at risk again and stopped trying to get food for myself etc etc. I dont have anyone now days to look after me enough for me to be able to try it. Im having to currently do or have wrong so many things I know I'd need to change or fix to have any chance of recovering again.

Also I think it would be harder to aggresssively rest properly as I dont have the hypersomina I used to get with the ME in the first years of my illness and also dont now days get the pain which used to motivate me to do it properly either. (when I got ME back I didnt get FM or the skin sensitivity and bone pain back with it).

What was the cause? A sore throat?
The cause of my ME seems to have been some kind of virus as it presented in viral flares (drs were diagnosing me with "a virus of some kind" for the first year... (though I also had a lot of hep B vaccinations too around time I got ME) and exams and big assignments brought it on (so stress and too little sleep due to all up night studying... weakens ones immune system when not sleeping well, there as been one study done Ive seen that in as little as 5 days of not proper sleep, your immune system gets affected).

Second time around which brought me out of full remission, the cause (trigger) was a virus which gave me a little cold (nothing which I would of thought would of ended up bringing back the ME).
..............

I may have damage now that I didnt have the first time as things are different.. eg I had very low BP when I had ME the first time round (as I had done my whole life). My BP is quite different now to what it was when I had ME before with severe dysautonomia.

I also now have 2 leaking heart valves which Im sure is a ME complication which I didnt have previously. So I do wonder that though I was sicker when I had this before, if I have more damage now. Im also now developing diabetes so I wonder if a serious disease such as this would make ME harder to recover from.. and with being older too now, maybe that may make it harder also to recover from.

So Im not that hopeful of recovering again with all these factors, in fact Im sure I wont due to some of the things currently going on in my life unless I can change things.
 
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JollyRoger

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I read your story with the jawbone.... very interesting.
Had you also the typical cfs problems like pem, frequent urination or brain fog???
How long had you been bedridden?
 

ljimbo423

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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.
Congrats on your recovery!! Many functional medicine doctors talk about treating cfs by finding what they call "hidden" infections. I think your jaw infection, because it caused no pain, would certainly qualify as a "hidden" infection.

I agree that the bacterial toxins from the infection, leaked into your blood, causing an immune system reaction and making you sick. I believe the same thing is happening with me, only it's toxins from an overgrowth of pathogenic bacteria in my gut.

They caused intestinal hyper-permeability (leaky gut), that allow the bacterial toxins into my bloodstream, making me sick. Severe dysbiosis and a leaky gut are very often EXTREMELY difficult to to reverse. Having said that, I have made great progress and will never give up!! Congrats again on getting to "root" of the problem!!:D
 

jepps

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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.

After a viral infection I was sick from 2010 to 2015. Methylation, supplements, treating the gut, treating the candida, a healthy diet and bioresonance were the key for me. Blood irridiation also helped, as well as treating a root canal infection.

Today I have a social life, exercise every day, I am able to eat everything, and to work fulltime.
But I agree to @brenda that it is harder to recover with meds.
 
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