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Has anyone been completely cured of CFS?

Discussion in 'General ME/CFS Discussion' started by cosmo, Jul 19, 2013.

  1. brenda

    brenda Senior Member

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    I don't feel pessimistic for my own healing, though the last three years since I returned to my home country, have been extremely challenging and in fact I often felt like giving up. Dangerously so.

    I don't think we need to have a diagnosis - we are sick with various combinations of parasites, viruses and bacteria and various degrees of damage to our systems, all due to toxins and stress, bad diets, overwork etc, but the answer is to give our bodies the opportunity to heal and the first and most important step is to get our diet right. depending on how much damage there is, we have to cut out the things that are a strain on our bodies.

    It has taken me a long time to get that bit right. I had to do a lot of experimenting after reading what others have done. I thought I had it right with raw vegan with juiced greens, but discovered that it was far too much folate for my body to handle. It has been especially difficult for me as I have been sick with mercury poisoning since very early childhood. That is 62 years ago. I believe I have had cfs since then.

    At one point when I was infected with borrelia, I became sensitive to just about everything, and nearly lost my life. My appetite went completely and I had to force myself to eat. I lost 54 lbs and was skin and bones. I could not even tolerate the taps/faucets being turned on due to chloride. I had to wash with bottled water, when I could get out of bed that is.

    I improved with nothing much more than brown rice and completely believe that it is the most healing food for our bodies though the pattern for Lyme is a gradual improvement after the initial period. And now once again, it is working its magic. I have cut out dairy, eggs, and sugar and am macrobiotic again and having days when I feel a remarkable improvement (and other days when I feel bad but that is the way healing goes).

    I don't want to encourage people to eat brown rice whilst there is the arsenic scare but there is a leaflet about it from www.amberwaves.org called Arsenic & Organic Brown Rice that put my mind at rest, (It does not seem to be on the site. It may be necessary to contact the owner. The leaflet is by Alex Jack)

    If conspiracists are right, you would expect organic brown rice to come under attack.

    I use small doses of supplements as a back up to the diet. Vit C has proven to be necessary. Whole grains are saving my life again. I don't think that I will ever function normally, there will be remaining damage, but what I do expect is that I will be able to heal my system to a good functioning level where I will be dependant on a decreasing level of supplements as my genetic defects recover function but perhaps some of them for life like b12 and folate. I certainly do not want to end up like Freddd with his mile long list and constant watching for deficiencies. I believe that our bodies are well equipped to heal to a much higher level than this, which to me is not much better than using medications to survive.

    I have had my confidence in the innate ability of healing within us knocked severely these past three years, but it has returned and now that the diet part has been sorted out, it is full steam ahead for me. It might involve antibiotics I have not decided yet.

    One other thing that is helping me is music. I read it helps and have been building up my classic collection especially of Bach and feel it indeed is helping me relax. I am also walking barefoot daily on grass on the way to a play park nearby where there is a tyre swing which is wonderfully relaxing to lie on for 10 mins or until a child arrives to turf me off!

    There is a deep inner feeling of healing which has really lifted my spirits.

    Daily menu

    Grains seeds and pulse soaked and sprouted.

    Breakfast - gluten free oatmeal with tsp maple syrup, soaked brazil nuts and pumpkin seeds.

    Lunch - brown rice, aduki beans, sesame seeds ground with salt 14/1, cauliflower, cabbage, fresh cucumber pickle with umeboshi juice.

    Dinner - tsp dried barley leaf or juiced celery , 2 tablesp chia seeds, maybe buckwheat crackers with home made hummus but not usually hungry..
    vli likes this.
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I agree with all that, but would add that the reports are commonly examples of poor journalism, and sometimes in the UK may have come through the Science Media Centre which appears to be a fan of the Wessely school. It disturbs me when the attackers sometimes blame the person who is reported to have recovered, as they may very well have been grossly misrepresented, which is common in the UK. I have experienced quite serious misrepresentation in the local media myself. They even attribute to people things that they have never said, making up quotes and saying "Ms X/Mr Y said...". Again, this has happened to me, despite my having provided the publication with my actual words which were suitable for quoting. They seem to have an urge to be creative!
    taniaaust1, vli and Valentijn like this.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I suppose this will never get answered until we have a proper diagnostic/biomarker that can be measured so then we can say we all have the same illness that people are being cured of.

    I dont think there would be too many doctors that could accurately diagnose cfs/me, although many cfs criterias can incorporate illnesses outside of say what many of us think it is with immune dysfunction and co-infections as the nuts and bolts of the illness. Plus even then there are sub groups.
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Here are the stories, from 4 different members of an ME forum:

    Don't shoot the messenger! :)
    Firestormm and Jarod like this.
  5. undcvr

    undcvr Senior Member

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    There is no cure for it, either you take what is necessary to plug the holes that CFS causes or you continue on with the symptoms. What ever protocol that you discovered works for u, stay on it for life. That is your cure. For those of you who say that you feel the best when you are not taking anything for it at all, it is good to note that fasting is in itself very therapeutic for various kinds of illnessness with its effects lasting long after the fast is done.
  6. Waverunner

    Waverunner Senior Member

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    Some of you have pointed out, that the medical system is worse today, than it was some decades ago. While I cannot confirm this, because I lack the experience, I can give you a perfect example of that something clearly is going wrong.

    In 1917, during World War I, a German doctor isolated a bacterial strain (e. coli Nissle) from a soldier who, compared to this comrades, didn't suffer from diarrhea. Keep in mind, that the equipment to that time probably was very bad compared to what we have today. He later sold this strain as a probiotic called Mutaflor (http://en.wikipedia.org/wiki/Mutaflor). Some of you may already have taken it. This probiotic is also used as a treatment for ulcerative colitis and other intestinal diseases.

    Nearly a hundred years later, we seem to have moved NOT one single step! We should have hundreds of clinically tested and working probiotics by now.
    Bacteria are not viruses, they are not very hard to find, you just have to look at them and their number is limited. We have 500 to 1500 different strains of bacteria in our digestive tract and by 2013 we really should know what these bacteria do or what influence they have on our health. By now we actually should be professionals in determining what strain works for what illness. But nothing happened! Nada, niente, zero! This is insanity! The latest trend is to do fecal transplant, which works very well for several diseases but leads to one basic question: What in heaven's name has the medical field been doing during the last century???
  7. Tally

    Tally Senior Member

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    I'm not so sure about this. I've been tested for countless parasites, viruses and bacteria and they all came back negative. If something was positive then ME as a diagnosis would not be applicable.

    I have been very careful what I eat all my life and I have access to fresh produce without pesticides which I am sure is not the case for 99,9% of human population, none of which have ME, btw.

    I'm not stressed, I'm not overworked, and my body has had all the time in the world to heal but it's just getting worse and I have a rather severe form of ME.
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Alot of the population do have those infections but they dont have a crappy nk function which might be the big factor??
    taniaaust1 and Sparrowhawk like this.
  9. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    and why are we not using (bacterio)phages - viruses that kill specific bacteria?

    Here is info about them:

    http://www.scientificamerican.com/article.cfm?id=are-phage-viruses-forgotten-cure-for-superbugs
  10. Firestormm

    Firestormm Guest

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    MeSci thanks for that post of patient experiences above :) It rather exemplifies the dilemma also noted by heapsreal in #63 above I thought.

    Anyone diagnosed in whatever way with this condition, should they feel an improvement from doing anything - or doing nothing - might claim they had 'recovered'. We - and the medical profession - have no bloody way of knowing if a) such a route is applicable to anyone else; or b) such a route is actually responsible for the improvement in health.

    Over and above all of this: WE don't know if we all share the same damned biological problems with our health. We can only say what we think has helped us get to the point we are now - and what we think might not have helped in our journey. We can only say that we were diagnosed. We can't even all say that we were diagnosed by X criteria - as more often than not a doctor will employ his/her OPINION when making a diagnosis or prescribing a treatment or even interpreting symptoms and recommending a specific course.

    Too much subjectivity plagues the world in which we live but it also plagues the world of medicine in general. Even if let's say, Rituximab, is approved in Clinical Trials and then approved for treatment of ME, those who receive it and believe it helps them - may not be in a position to prove it; and the same is true for those who find Ritux doesn't help them. It's a mess and no mistake.

    Still, we do what we do and plod on, or crawl.... :)
  11. Waverunner

    Waverunner Senior Member

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    I can't give you the exact answer but it could have to do with laziness, over-regulation, the fear and possibility to get sued, no government incentives, no self-responsibility, the will to earn money the easy way and other things. I haven't figured out the main cause.
    MeSci likes this.
  12. taniaaust1

    taniaaust1 Senior Member

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    The gene test doesnt diagnose celiac disease. All it does is say if one is suspectable to this illness or not. It can help to rule it out in many but for many who do carry this gene like myself, one is left still not knowing if one has celiac disease or not unless it shows up on other tests as well.
    SickOfSickness likes this.
  13. taniaaust1

    taniaaust1 Senior Member

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    My case was like that, I was fully recovered for 2-3 years. I even did one of the biggest marathons in the world (I ran over 90kms) during my this recovery period. Many who post as recovered I dont at all see as being recovered as they are still pacing etc, but my recovery wasnt like that. I was being completely normal in going back to how I'd been previously to ME/CFS during that time. I was doing any adaption, life change things at all due to the ME.

    You are probably wondering how I got sick with ME again. It was cause I caught a virus (not ME) but an ordinary, everyday virus people get and during the virus cause I considered myself completely "cured" as I had been fine for quite a while, I went to work and did all my normal activities while I had a virus instead of resting. This caused me to end up back wtih mild ME. Then I wasnt allowed to take some time off once I got this illness back mildly, (I believe I would of been able to make a full recovery again at that point if I could of rested for just a week), so at that point, crashed right into more severely again and never have been able to recover again since. Its like my recovery opportunity now has gone, I now have so many different hormonal abnormalities and a badly damaged autonomic system.

    . So I think "triggering" ME things which can trigger someone to end up with ME in the first place, never go away and even the fully cured could well at some stage of their life be it a few years cured or even 20 years cured, could well end up back with this illness again, be it from a virus being caught or after having a vaccination etc. A body suspectable to this illness, will always be so.

    I do have a thread somewhere on that but dont know where, so I'll briefly respond here. My remission was due to ART (aggressive rest therapy). Enforced rest times eg I made myself take daily naps, resting even more then I felt at times was needed, really building up my energy reserves and taking great care not to never over do things or get close to over doing. Over time with that rather then ART restricting me, I found I was able to do more and more without it being exertion, it was a long process with gradual improvement due to the care I took, happening over years (maybe 3 years till recovery doing that until my body was completely normal as a normal persons is and how I had been before this whole illness). .

    During my few years healing from ME/FM etc process, I also took great care to get as many stressors out of my life as possible so rested my adrenals too one coud say, focused on the littliest postive things etc. But it was the ART (rest) which had to big impact of my recovery back then. (completely opposite to what they have people do with GET). It was important for my recovery to be doing far less, not more.

    I'd tried herbs, I was studing naturopathy when I first got this illness so tried far more early illness then most, vitamins and so many other things for the 2 years without any success at all at helping anything, not even a symptom was helped, before I came up with the idea of ART out of logic.. I knew I got extremely sick from doing anything so thought.. "maybe I'd improve if i did nothing" . I then even gave up eatting nearly all my meals as just eatting was bad exertion to me, my jaw would go into pain and burn out trying to chew, my weak arms would shake trying to get fork to my mouth and my judgement of where my mouth was, was very poor (I should of been on a drip), so I went to eatting once per day sometimes not even that (at times I was going up to 3 days without eatting in what I'd call like a comatose state), eatting just enough when I did wake up, that I didnt starve. I gave up EVERYTHING non essential to my life, didnt even brush my teeth, went to washing once a week if that (my wash was a wipe over with the flannel my daughter would bring me etc. I stopped doing my toilet crawls (I couldnt walk so used to crawl to a toilet and often fall asleep on the floor on the way) and instead got my children to bring me in a potty when I just had to go and would allow then myself to just fall out of bed to it, I'd then sleep on the floor before trying to get back into the bed. (I may of even been wearing nappies at one point to conserve the little amount of energy I had and to stop postexertional symptoms..those days were horrific).

    My ME was very severe so to do less I had to give up a lot of things most see as basically essential (no going out of the house.. a friend got our shoppping and just left it at the front door for the children to put away, no visitors, no going to doctors - didnt matter much to me at the time anyway had I even been able to get to one as I'd been abandoned by them before I became completely bedbound "there is nothing we can do" and walk me out of the clinic door leaving me have to deal with so many severe symptoms). Someone with less severe ME doing ART and making sure not to go over the limit in which any PENE comes in, wouldnt need to cut back on the things I had to to not be overdoing things.

    Rest therapy (and cuttting back everything) made a huge difference over long term (and prevented me from loosing each small gain I was slowly making).

    Anyway. I went from what I described above to being able to run a huge marathon without any postexertional effects at all after years of restricting things and allowing my body to just heal from the ME. I cant really remember how long it took to go from the bedbound state to running a marathon without any bad affects.. it may of been 5 years of very slow and consistance gradual improvement due to being so very careful to try not to tax my body in anyway while while I had ME. One cant do ART and suddenly are healed over night.

    One thing I noticed thou is that the weller one becames, the bigger gains towards improvement I had per year (it was easier for the body to recover, over time it was like a snow ball effect, heading the right way). Like I think once I reached the 70-75% normal mark, I managed to get up to 100% recovery by another 12month while when I was bedbound.. my improvement was only about 5-10% in a year (probably cause one cant cut back on much at all). I kept the goal in mind that any improvement I could make in a year was good (rather then being focused on my dismal situation).

    If I can make again even a 10% improvement in a year, I'll be happy.
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  14. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Wow - you have really been through a lot, Tania, but your story will give hope to others along with some very clear and useful advice. That's one of the great things about sites like this - they enable people to learn from others without making the same mistakes. So all your effort and setbacks should help others to get on the right path and stay on it.

    I believe that you are right about always being susceptible to ME once you have had it.
  15. Firestormm

    Firestormm Guest

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    I think in the absence of any specific and personalised treatment (given we don't know what the ME markers are or even if we did, without a specific treatment), periods of enforced rest (and understanding - I recall periods of extreme stress just because I was told to rest and do little or nothing: drove me MAD!); are probably the best advice.

    taniaaust1 all of my relapses have similarly been triggered by viruses that others around me picked up/passed on and recovered from. I didn't or couldn't shake the effects. Just couldn't get back on my feet.

    I remember this chap I met in Jersey who had ME. Anyway, he was actually an actor (played a key role in Bergerac - not that you guys will have appreciated THAT series I am thinking), and therapist believe it or not (and just goes to show - in my opine). Also my therapist!

    He caught mumps when an adult. That lead to ME. Talk about extreme measures: he wore a mask whenever he caught a cold (bit late if you ask me); but whenever it was 'flu season' there he was either behind closed doors or wearing this mask.

    Gods now how he managed when performing - I never did ask :)
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  16. EtherSpin

    EtherSpin

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    Wow Tania, I can relate though I haven't gotten that bad with eating and toileting yet, I flannel wash once every 3-4 days when at my worst and have a bath instead every 3 days when I am cruising OK, I was rolling along the floor to/crawling to/sliding along the wall to the ensuite toilet at the start of the year but now manage since b12 injection regimen started, it has helped with dizzyness/wobbliness though not so much with energy.
    Im bad with rest because we have a three year old and a six month old and my wife is home here caring for them,once they are up and about I pop myself in the same living area and am vigilant about whether I can assist with small things, I find it hard to say Im having a proper rest and enforce that but Ill keep trying! your story is amazing and I hope you have the next wave of recovery very soon -bring on the snowball!
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  17. Sparrowhawk

    Sparrowhawk Senior Member

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    So many variables...heaps real and others have named many things that can be bio markers and many other factors that may contribute to our systems getting to this point of collapse. I do find I get overwhelmed considering all the interdependent factors

    What I like so much about Phoenix Rising is this is the only group I have found that tries to aggregate the potential approaches to healing and invites at least crowd sourced feedback on actual experience. I agree that is much more likely to lead to a cure or cures -- or at least things that may lead to improvements or reduced symptoms -- than waiting for $1billion in research.

    The suggestion to study populations segregated by bio markers was pure brilliance, BTW. Can we get Kogelnik to add it to his research wish list? ;-)
  18. jimells

    jimells Senior Member

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    Your experience hints at a problem that is never really discussed anywhere: massive incompetence and sheer ignorance. In ten years of illness, I have met damn few doctors that I would trust to properly treat a pet hamster.
    ukxmrv and heapsreal like this.
  19. Sparrowhawk

    Sparrowhawk Senior Member

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    Verily thou sayest buckets.

    The HMO I was part of ... Oy.

    Eventually I had to go private to find any progress or investigative breadth outside the narrow usual.
  20. EtherSpin

    EtherSpin

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    makes me wonder if there shouldn't be extra tiers of doctors (or more of one tier if they already exist) docs who are hired by particular medical clinics to treat people with chronic illnesses vs docs for kids,pregnancy complications - still a tier below specialist but able to focus their research and skills a bit more
    Valentijn and heapsreal like this.

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