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Any serious cases with remission?

Discussion in 'General ME/CFS Discussion' started by eric_gladiator, Jun 20, 2017.

  1. eric_gladiator

    eric_gladiator

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    Do you know a case that is serious lead a normal life? If so, you could tell me a little about that person and how he managed to recover


    I think that the cases in remission have been because it has been people who have received good treatments from highly specialized doctors in this, it is a little unviable for the majority of patients economically speaking
     
    Knockknock likes this.
  2. Sherpa

    Sherpa Ex-workaholic adrenaline junkie

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    I live a normal life now.

    I was very lucky to get about 6 consultations with a few great practitioners, naturopaths & biochemists.. to tangle out key issues and interpret tests.

    I was also lucky in that my family helped me purchase supplements - and I was able to spend several thousand hours researching, trial-and-error'ining, and troubleshooting my issues.

    You can check my post history for details.
     
    Last edited: Jun 20, 2017
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  3. Dechi

    Dechi Senior Member

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    Were you diagnosed with ME ? What was the treatment that worked for you, if you don't mind me asking ? I have too much brain fog to read all your threads.
     
  4. Valentijn

    Valentijn The Diabolic Logic

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    Some people spontaneously go into remission from ME/CFS, but there's nothing consistent which leads to it. They get lucky :p
     
  5. Alexandra90

    Alexandra90

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    I'm curious about this group.

    Is it something particular that makes these people stand out? Like, does it seem to be any positive "signs"?
     
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  6. Knockknock

    Knockknock

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    its very important to be able to get treatment from a highly specialized doctor, unfortunable not everyone has that posibility or privilege(sad) even though total remission it's not something many people with me/cfs will archive , much better, be able to work part or full time, get much better, be able to walk to do some social life yes, becouse a lot of the con infections co multi issues of the so many an ME/CFS person have were addressed by a good doctor with supplements, antivirals, methyliation protocols etc, but the core the core root cause want..
    you see many people will say i was able to travel again, i was able to do this and that...but not total remisión , the body recovered to some degree wick is price less for some bed bound , house bound.
    But yeas its importan to see a good doctor especially if you can do it the right after the onset within months ..
    i have recover in many aspects, i can fairly( with some limitations do a normal life social etc..but never in remisión still have some muscle issues, some time very mild concentration and others...
    there is many things to address in this multi systemic disease ...many if you address the most importan ones you will get significant better.. but hard to say total remission in my opinion .
     
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  7. lnester7

    lnester7 Seven

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    I am "functionally recovered" on and off I do great with medication. For me the trick was the OI meds (without it I would be mostly housebound) I take midodrine, Florinef and Beta blocker, This days I do not as much as on when I started since I was getting better (this month I crashed after traveling and living la vida loca) so I was brought back to reality and will have to use it again. But overall that is why I function so well.
    Note: I have POTs also. for CFS I use immune modulators (imunovir, and LDN).
    I also have colitis which is a whole different conversation.

    I go into functional remission mostly on Summers. Have a crash in fall independently of everything. Is just my CFS pattern (no fail for the past 10 years) just took me a while to figure it out.
     
  8. sb4

    sb4 Senior Member

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    Have you considered it could be due to sunlight. Increased light intesity has major effects on hormones, circadian rhythm, mitochondrial health, and much more...
     
  9. lnester7

    lnester7 Seven

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    I don't know what it is, I go outside and make a conscious effort to sunbathe but still happens. My neighbor who has chrons, also goes down and a few autoimmune plp I know. And as me nothing they can do to change it.
    Noté: sometimes I go to Carebean for 2 weeks or so and even though I feel better always while down there, does not avoid the bad crash.
     
    sb4 likes this.
  10. Knockknock

    Knockknock

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    As i said cfs is the result of many disrupted pathways in our body functions , our Dna was mutated changed our genes mutated as result of this Rnase l antiviral and many other esential that the buddy need to keep away pathogens cancer cells viruses , gut bacteria balance , fungus away at bay on check" they are not there"" just like in AIDS.. we have low immunity the most importan part inate immune system is impared this is the main reason why we are not just on system fix we are multisytemic we need to use different protocols , combine them, antivirals, antifungals, methyliation protocol certein supplements that will help the deficiencies ...
    unfortunable the only thing we are not addressing is the root cause, thanks to so much missleading and conspirancy to blindfold this illness we have not been able to address the pathogen underlaying causing all this body disruption .. the day we finally do them we will have a full remission other wise it's getting better addressing independently some of the so many issues we have...
     
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  11. Hip

    Hip Senior Member

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    Do you mean someone going from severe ME/CFS to full remission (see here for the definition of mild, moderate and severe ME/CFS)?

    There was recently a case of a severe ME/CFS patient improving substantially, such that they now have only mild ME/CFS (which generally means you can work either full time or part time); this was after treatment with the immunomodulatory helminth Necator americanus.

    That not quite full remission, but it is a two-level improvement on the scale of mild, moderate and severe, which is huge improvement.


    Dr John Chia's oxymatrine / Equilibrant treatment he claims can get severe bedbound ME/CFS patients back to work. See this post:
     
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  12. justy

    justy Senior Member

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    I had a spontaneous remission after about three years of being ill. At my worse then I was moderately affected, but mainly more mildly affected. I also had a bedbound spell. My remission to almost normal (95%, some issues remaining, although I could exercise) ended after around 9 -10 years and for the past 9 years I have been moderate or severely affected, house/sofa/bed/wheelchair bound mainly. I don't see any glimmer of hope this time.

    See above about my spontaneous recovery. There are quite a few of us on PR who had long remissions and got sick again. Most, but not all of us have been more sick the second time around. I wish someone would study us!
     
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  13. grapes

    grapes Senior Member

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    You know, there is actually hope if CFS is the result of disrupted pathways. The latter is what Organic Acids Tests reveal--the disrupted pathways. And for most, they claim they are treatable with various recommended nutrients...though in my case, some of the amounts they recommend are not enough. For example, many of disrupted pathways in my energy point to the need for CoQ10, but the amount they recommended is FAR too little for me. I was considered functionally deficient by Spectracell for my CoQ10, yet I was on 1000 mg ubiquinol!!

    The same goes for those disrupted pathways that are genetic in origin--they still are recommending certain nutrients to help those.

    I also think my mito may have been harmed from mold, and later high copper...those two could be root causes. And I'm attempting to remove the lingering mold now, plus treat potential damaged mito from the copper. We'll see. Also, I'm pretty sure the copper detox also removed a lot of nutrients out of me, and I'm current working to get them all up. Those nutrients are VERY important and most are B vitamins.
     
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  14. Alvin2

    Alvin2 Senior Member

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    Consider this an opinion if you must but if there was a smoking gun we would have already found and exploited it
    That said if there are triggers to be found or other conditions causing your fatigue you should investigate them.
     
    Last edited: Jun 24, 2017
    barbc56 likes this.
  15. grapes

    grapes Senior Member

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    Sherpa, I really appreciate your posts. Also found one you did in 2016 where you listed this:
    • I tried to determine if my immune system was Th1 or Th2 dominant, and experimented with a number of supplements recommended in the Th1 tips or Th2 tips articles. Some worked great to take my inflammation down -- some didn't.
      I strictly keep a circadian rhythm - wake with the sun, wind down & go to bed shortly after dark, block out all kinds of blue light at night. I follow the same sleep schedule 7 days a week - with no non-emergency exceptions. It's challenging to keep this schedule because none of my friends or social events do. But the benefits are worth it.
    • I take mitochondial boosting supplements & antioxidants which are listed in the Protocol to Cure Chronic Fatigue. I only take some of these. They helped a lot with energy.
    • I get sun twice a day. I'm on a regular, gentle exercise program. I track my workouts with an iPhone app and log my calories / carbs / fat / protein intake daily. The sun gives me real vitamin D and exercise literally builds new mitochondria.
    I am tackling my chronic fatigue in multiple ways. I know that mold inhalation a few years probably is still in me creating havoc, so I'm working on removing that and getting ready to do a consultation with a mold expert for further tweaking. I also know that the high copper I had in 2015 then 2016 probably also made me worse and could have harmed my mito---so I'm taking several mito supplements and will peruse what selfhacking says. I also take several supps based on two different OAT tests, 2016 and 2016. I'm waiting on the results of an Amino Acid test and will act on those results. Spectacell also revealed nutrients I need to bring UP. And I'm improving my methylation issues which all this stress caused problems with. I'm determined to beat this.....
     
  16. Alexandra90

    Alexandra90

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    I didn't ask for any miraculous discovery - just if anyone had any speculations or made any observations. That wouldn't be so crazy. I read observations ppl make here all the time. I'm guessing you do that as well.
     
    justy likes this.
  17. Alvin2

    Alvin2 Senior Member

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    true enough, i just got the feeling you were hoping for some breakthrough which i wish we had but unfortunately don't :cry:
     
  18. grapes

    grapes Senior Member

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    I'm now seeing posts that refer to immune function---are we saying that all cases of CFS/ME are immune related?? Mine seems to be due to mold, then high copper. Is that immune related, or not? Very curious.
     
  19. grapes

    grapes Senior Member

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    Alexandra90, this is just me, but I feel that I've had to uncover any rock I've found to eventually conquer this, or at the least, feel much better. So for example...

    1) I've done two OAT tests (Organic Acids Test in 2015, then a year later in 2016) which have revealed a lot of things I need to treat and am doing so with a variety of supplements. I also had to figure out that some of their recommended amounts are NOT enough for me....
    2) I've done a hair and blood test to reveal that I had heavy metals which needed to come down, so I did that...
    3) I've done a Spectracell test to see what nutrients needed to be improved..and am doing that
    4) I did 23and me.com which I uploaded to livewello.com, then analyzed what mutations just may be causing problems. I take certain supplements for those that I think are active...
    5) I also uploaded my 23andme to nutrahacker to analyze what they feel I need to take
    6) I did an Amino Acids test to see what might need improvement there---waiting on that to come back
    7) I am scheduling a consultation with a mold expert to tweak what I'm doing to get lingering mold out of me, as I was heavily exposed a few years ago
    8) I am working to change the way I react to things to lower my stress

    I may have forgotten one or two tests but that hits the main ones....
     
  20. Hip

    Hip Senior Member

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    Mold has immunomodulatory effects. But if you had major mold exposure as an apparent trigger of your ME/CFS, you might want to consider whether you have chronic inflammatory response syndrome (CIRS) rather than ME/CFS. Both diseases have similar symptoms, but CIRS may be more treatable, using the Shoemaker protocol for CIRS.
     

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