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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@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.
Ive been in ME/CFS studies with spect scan and MRI? which have shown issues with the brain and shown our grey matter declines faster then it should do.

the lesions in a ME brain can come and go so it appears you can recover from those.. the shrinking grey matter thou, I dont know.
 
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taniaaust1

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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
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.
 

taniaaust1

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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.

A study has shown full recovery is possible in 5% . More then that thou must of had at one point gone through a full remission but then got sick again as that's not uncommon.

I'd like to know how many gain a full remission "at some stage" be it for a year or several... Im going to guess it may be around 10%?? (my guess would be around half of us who go into full remission get sick again)
 

Jesse2233

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I see two ways full recovery, remission, or partial remission can come from biomedical treatment:
  1. A pathway for existing drugs.

    Ampligen
    may pick up steam in Argentina and Europe demonstrating to the new (more lenient) FDA it's effectiveness for the post-viral cohort. Remember that Ampligen has brought about bed bound recoveries for many, including members of this forum.

    Rituximab
    is looking likely to clear Phase 3 in Norway which means big money for Genentech and an option for the autoimmune cohort. Yes there is mixed anecdotal evidence for RTX in the US, but remember it has created long term remission for at least 5 Fluge / Mella patients with CCC diagnosis.

    There are other monoclonal antibodies that may also prove effective such as Bortezomib and Tocilizumab or immunosuppressants such as Cyclophosphamide and Rapamune. Additionally HSCT is becoming safer and more refined as an almost total cure for many autoimmune diseases.

    The African sleeping sickness drug Suramin showed promising results in a pilot autism trial and may soon end up treating ME/CFS metabolic pathology at its core.

    Ron Davis is using his impedance assay to test every FDA approved drug (the assay is also a potential biomarker). There are drugs like Suramin out there that have never been tried before. And given the success of Rituximab for some of the autoimmune cohort there is great reason to believe some of these drugs will be beneficial.

    A huge amount of research and focus is being done on microbiota. Refinements in fecal matter transplants and probiotics are occurring rapidly.

  2. New drugs on the horizon

    There are new, better monoclonal antibodies being developed that can precisely target aberrant auto-antibodies while leaving the rest of the immune system in tact.

    On the antiviral side, drugs like DRACO are being developed to eradicate all viruses. Shorter term, a team in Rega, Belgium is working on a chronic enterovirus cures codenamed Compound 17 & A that is already eradicating Coxsackie B4 from the brains and organs of mice without major side effects.

    Jarred Younger is working on a new version of LDN that can be taken at higher doses and bring down microglial inflammation (brain fog / fatigue) to an even greater degree.

    And a precision nutrient delivery system called Endotherapia for hard to treat long standing illnesses is being developed in France.
 

Pen2

Support, Good Medicine.
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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.

That's worrisome about your sister. Like me, I didn't understand what I was supposed to do back in 2000. I had no guidance. I pushed for 15yrs. My body now at 58 just quit. I knew something was terribly wrong. Luckily my Doc understood and I had to stop working.

Your sister, being in denial, I can relate.
It's the reason I pushed for so long. I'm glad she has you. Hopefully one day you'll be able to sit down and explain yours and others experiences with ME/CFS.
Going back to work Was the worst thing I did. No guidance.
 
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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?
Im fully recovers. Lots of people fully recover.
 
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I think it may depend a lot on how you got 'sick' in the first place.. I almost died from a case of West Nile meningoencephalitis, so I have permanent brain damage, kidney damage from going into organ failure, high blood pressure from damage from the West nile, etc.. Many of the things I suffered cannot be repaired, so I cannot believe I could ever be all better.. I am thankful for good days and soso days and for my support system.. Wishes for improved health and better days for all.. Lisa
 
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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.
 

femtosecond99

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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.
I think it's important to figure out the true causes of your CFS, otherwise it can definitely happen again.
 

Sandman00747

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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!
 
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@matt321 @femtosecond99 what did you guys do to recover? How come you still here in this forum?
Do you take LDN or any antidepressant and consider yourself recovered? What treatment do you follow?

I want to think is possible, after two years and a half trying alternative medicine, diets and supplements I couldnt find any improvement and now I'm on amitryptiline 10 MG and 400 mg alfatocoferil. I have improved my sleep and pain with these two meds A LOT, however Im very afraid of the side effects. I want to try LDN too, but I see it has many side effects... I don't know if continue eating healthy and resting or gradually upgrading the dose of amitryptiline and starting with LDN. I read so many different approaches that Im confused...