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ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
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CURED CFS/ME? PLEASE SHARE YOUR STORY HERE.

Discussion in 'General Treatment' started by richard86, Dec 8, 2013.

  1. richard86

    richard86

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    I know this is probably one of the last places you'd find someone who has got rid of their CFS - they're probably too busy out there enjoying the life that was robbed from them for so many years - but I figured it worth a shot.

    If you're like me, you're probably sick of wading through swathes of technical, negative, contradictory & inconclusive information about this enigmatic disease & want some answers from those who have taken the bull by the horns... & won.

    Not to be dismissive, but I'm not looking for ways to "improve" my quality of life/diminish some symptoms etc etc to make my life more "manageable" for the next 40 years. I want to get rid of this hell-ride for good.

    So PLEASE, if you have conquered this disease & have some stern advice, I'm (we're) all ears.
    Rlman, leela, overtrain and 2 others like this.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Tell us more about yourself. How long u been ill for and what testresults u have had etc.
    Then we will ttell you the cure. Lol
    Adlyfrost, allyb, leela and 2 others like this.
  3. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    There are many (and when I say many I mean dozens) stories of people completely cured and how they did in the Internet, most of them in forums. Some of these are here, but as you noted, most of these persons won´t even see your thread. So I suggest you go to the mountain instead of asking the mountain to go you. Look for these stories!
    allyb, Wayne, Tito and 1 other person like this.
  4. Sparrow

    Sparrow Senior Member

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    I don't want to be a downer, and completely understand the desire for real information about what works and what doesn't. I think the information is certainly valuable. But for what it's worth, I would also suggest being somewhat cautious when it comes to people claiming that a particular thing has "cured" them of this illness.

    Many times, people with this illness will recover to varying degrees, regardless of what they do or do not do. It is a regular part of the illness for a lucky subgroup. If a person has taken a particular supplement or started a particular protocol or made a particular diet change or started a particular behaviour around the time they've begun to improve, it can be very easy to assume that those actions were responsible for their recovery. They may believe that very sincerely, but that does not mean that it is necessarily true. Some things may truly have helped some people, but others may believe that a particular intervention has led to their improvement when really they would have improved all on their own without it. It is very, very difficult to tell the difference.

    In addition, not everyone who is "cured" remains that way. They may truly believe themselves to be cured, but there is no way to know for sure until they've spent many, many, many years without having symptoms reappear. Several of the active specialists in this area have pointed out a pattern of recovery that seems common to a certain subgroup of ME patients, where a person will make what seems to be a huge and sometimes full recover, live a normal life for many years, and then gradually crash back down even worse than they were before. This happened to me. I was fully functioning, doing aerobics, living a normal life, etc. with no symptoms. But many years later I am bed bound and in vastly worse condition than I ever was before. It was not truly gone.

    I have tried many things this time around to help me - numerous supplement protocols, alternative medicine, some medications, etc., but without the success I had those many years ago when I didn't do anything at all. I'm getting slowly better, and some things have made a clear and definite positive impact, but I'm not at all cured.

    For what it's worth, for me personally, that first time around my remission came from resting. That's it. Nothing fancy. No supplements or medications or protocols or diet changes or behaviour modifications or mental gymnastics at all. Just resting. Unfortunately, this second time around I'm sick enough that to rest enough that I honestly never ever strain myself or push too far, I would have to basically lie still and do nothing at all. And I'm just not willing to give up that much of what little remains of my life now. So I can't say whether that would cure me again. I do improve the more I manage not to strain myself, and the rate of recovery seems to get faster and faster as I go. I have hope that someday I will manage to fight it off and feel free of it again.

    But having already been through relapse once, I will probably never again expect that it's completely gone.
    allyb, Snow Leopard, beaker and 7 others like this.
  5. helen1

    helen1 Senior Member

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    Over the past year, I've done what Beyond suggests and have searched for people who appear to have recovered. I'm up to 28 so far, who say they are 80-100 % better, found on PR and in real life. However, as Sparrow says, we don't know if these people are in remission or in recovery.
    allyb, MeSci and Beyond like this.
  6. overtrain

    overtrain Medical Mafia needs to die via this virus.

    Well, you got a live one here. I can attest to Sparrow's REST advice. I started a thread similar to yours about 6 weeks back, asking if anyone on this site had recovered, & got great responses. I'm one of the either recovered or big percenters. I'm WELL aware it could be a mirage, that I'll follow the pattern of vastly improved, if not over it, then fall into a deeper abyss. I was diagnosed, i know i have/had it. Whatever terminology i use, I refer to this now as a terminal illness. And i do stop by this site from time to time bc i want to support ppl. Plus, the medical knowl. I continue to soak in here is cutting edge. This place is my only doctor. I can't imagine going thru this horrid illness then turning my back on ppl still suffering.

    I still rest. I'm paranoid about ever getting that sick again. I take so many supplements a day i swig em down like 10 at a time without gagging. I don't by any means have the life i had before yet. I may never. But i can leave my house now. I can even leave a few days in a row. I haven't crashed since last summer. My memory is back, marbles intact, and I'm not going a week without a shower or crawling to the toilet so i don't wet the bed. I awaken refreshed. I can tolerate bright lights and noise better. I don't have weird symptoms that change even within the hour.

    The other posters are, of course, right. Who knows what caused what. Maybe i would have reached this state doing the opposite of what i did to try to save my life. I wanted to die so, so much because I felt so surreally despicable. I cried a lot. And for a stretch, i thought i might die anyway because this thing was clearly trying to shut my organs down.

    Doctors were not just useless, but directly harmful and outright rude and obnoxious. Yeah, sure, all i needed was MORE EXERCISE? I was very athletic and in the best shape ever when this crap happened. Certainly better than the "professionals" with their little charts out scribbling hypochondriac, or whatever. (I obv. Have to let go of the anger this caused, ha).

    So I hope this helped. You wrote you want "stern" advice. My best advice is to cease any communication with ANYONE who doubts you or gives you any vibe like that. It's not your job to educate them. Your job is to PRESERVE your energy for your recovery. Do only what makes your energy better. Axe ppl, places, things that bring you down in any way. Watch, listen, observe your body's reactions to everything. Ask yourself WHAT you want to eat, do, etc. most of all, do NOT throw in the towel. You are not alone. I never thought i was going to be able to get on my bike and go to the store again. Or remember anything from a basic conversation. I thought i was toast.

    And i still might be toast. Even if, i hope i have the strength of character to use what i have left in a positive way, if for nothing else but as a statistic for medical science so it's one iota less likely anyone will have to live like this again. >>hope. Good luck.


    ere
    WoolPippi, allyb, golden and 8 others like this.
  7. PegS

    PegS

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    I rarely share but I do read keep an eye on the forums and news. I did not have an official diagnosis, but I was ill enough for about 10 years that I could not keep working as a teacher and was unable to go to the grocery store, etc. for many years. I do not tell people I am well, but most who know me do not know that I was ill unless they were around during the worst of my illness. Am I well? I don't consider myself sick, but I am very careful about energy expenditure and how I live my life.

    What did I do to return to a functional state? I stopped working and did nothing outside the home for years. I slept probably 14 hours a day. I stopped exercising after a couple of years of riding a stationary bike daily showed no improvement at all in stamina or condition of my muscles. I changed my attitude about the value of "doing". I took 60 mg of Armour thyroid a day to "support" my thyroid. I now take more. I got counseling and had a couple of people who listened to me and believed me. I took an herbal mix for hormone support. I took magnesium because my RBC magnesiumlevel went to almost nothing. It took years to get that level back to normal. None of the other blood work showed any problem other than anemia, which I'd had for years.

    My counselor recommended I try an antidepressant, and I started Effexor. Amazingly, it worked at the lowest dose to make me feel normal rather than under the black cloud. That did not cure me but made it more easy to adapt and make choices about how to use what energy I had. I stopped looking for a cure. I just did what I thought was healthy for me--diet, air, basic vitamins, etc. I finally added calcium to the basics I had been doing, and that seemed to put me more in balance. So if one looks at the last thing one does before getting better, I might say calcium did the trick. Not true, of course, but in my case, around this point, I turned the corner. I did not deliberately do more but my life changed in that we moved closer to family, our daughter went off to college, my husband retired and came home, etc. I also had a small supply of Xanax I used when I could not sleep or felt like I was going crazy. I used it so rarely that it worked every time just to knock me out.

    Am I well? Well enough to have stayed upright for the past 16 years on about 9 hours sleep a night. I rest more if I feel like resting. I don't "do" just to do, and I stay home most of the time. During the past 16 years I have been caregiver to both my elderly parents and to my daughter. Our daughter came home after a semester at college in which she fell ill with the flu and never got better. I cared for my dad for over 5 years (2 years for 24 hours a day) after my mother died and while I was also caring for my daughter, who was sick all that time but not homebound until my mother died. I never had both my dad and my daughter in living in my space with me, however. I had help from my husband and also from some paid caregivers for my dad. Eventually I put him in a nursing home where I visited him daily and oversaw his care for the rest of his life. When my dad and our daughter needed the most care at the same time, I had to be able to go home to peace and quiet for myself.

    Did I actually have CFS/ME? I never got a diagnosis but our daughter has been ill for the past 16 years with exactly what I had. Her test results look like copies of mine. She has the diagnosis and has been to the specialists in our area. She has tried the various protocols that have been developed (that she was willing and able to try). Her illness has followed the pattern of mine, but she has not gotten better. We have spent much more time and money trying to figure out what would help her than we did with me. If I had to make a judgment by looking at what I did and what she has done through our illnesses, I would have to say...rest, rest, rest. Don't "exercise." Don't try to keep doing what you are doing or have been doing or have always done. If you know you are sensitive to certain things--food, pollen, mold, chemicals, etc. eliminate what you can. In some ways I think trying lots of different meds and protocols interferes with healing. Be gentle with whatever you do. The "detox" programs can be dangerous. They put my daughter in a 5-year downward spin because she was releasing toxins but not being able to get them out of her body. We do believe the methylation block was the reason she got so sick any time she did anything that involved "killing off" or "removing toxins." Now we don't try to kill off stuff or intervene too strongly or suddenly. It's the only choice we really have at this point because she is so sensitive to any change.

    The problems with my advice are many. Can you survive without working? Do you have support both financially and emotionally? Can you just do nothing and feel ok about it? How do you make choices for what may be supportive without going on a search for a cure? Do you have a doctor or medical supporter who listens and believes? Can you find a quiet place to be for some of the hours of the day and night? The main thing, I think, is to be able to move toward a better balance, slowly, gently, with as much support as you can gather around you. And laugh when you can.
    Tiger Lily 813, allyb, Wayne and 11 others like this.
  8. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    @PegS , how many years it took of sleeping a lot and reducing daily activity to the basic to see an improvement? I am nowadays sleeping 9-10 hours and I always wonder if I am sleeping too much or too little. I feel crappy either way lol but the crappiness comes in different shapes depending of more or less sleep hours.
    allyb likes this.
  9. Sparrow

    Sparrow Senior Member

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    I slept literally 22 hours a day for a few weeks after my first crash, and it seemed to help a lot. These days I notice that if I sleep 11 hours or more, I feel very slightly better. The usual 8 or 9 hours that used to be enough are woefully short now. That may be specific to me, but I've seen enough of a difference to know that for me, more sleep is better (although consistently getting that much rest when my husband needs to wake up for work, etc. is a different story). Oddly, I've found that taking naps during the day doesn't seem to help nearly as much as sleep in solid stretches at night.

    I would absolutely echo what others have said here in terms of the keys to actual improvement. It's just a very difficult thing to do in practice. Mourn the loss of your life for the time being, but give it up. Then give up some more. Then give up those pieces you've still been trying to do because you desperately want to. Let go of any healthcare professionals who are draining your resources more than they are helping. Don't spend too much energy dragging yourself around frantically looking for answers when that energy might be better spent letting your body do it's job and try to help on it's own. Listen to your body, and give it absolute authority over what you do, eat, etc. It knows better what it needs than you do, or your doctor does, or anyone online does. It has had many, many years to perfect that system. And if it wants to rest, then rest. As much as it needs you to. Try not to attach guilt to it.

    If someone you knew had a horrible, raging, debilitating infection, you would expect them to rest. You would not expect them to keep trying to keep up with their daily life and responsibilities. With an illness as serious as ours, you would probably think they were crazy if they did. And if they tried to push on, you wouldn't be surprised if they got worse or at least didn't recover. My experience so far leads me to believe that our problem is very similar. It may or may not have anything to do with actual infections, but the results of pushing through it at all are the same. It's just damned frustrating and inconvenient because we're lacking clear answers and because it goes on so long.

    Think of someone with the flu. If they researched enough, or saw enough specialists, or did enough tests, or tried enough experimental medications, it's possible they'd eventually find something that helped to improve their symptoms. ...But it's also possible they'd be a lot better off if they had stayed in bed and got plenty of fluids.

    Stern advice...

    You're not resting enough. You think you are, but you are not. None of us are. We're all trying too hard to live at the very edges of what our bodies are still capable of. It's human nature.

    Pay VERY close attention to things that strain your body, even a little, and cut them out as much as possible. Then cut them out further. If you're noticing minor symptoms after doing something, you have already gone WAY too far.
    Singout, WoolPippi, allyb and 12 others like this.
  10. overtrain

    overtrain Medical Mafia needs to die via this virus.

    I also think it might be time to redefine "do nothing". What is that?

    It's akin to looking at a wall that's a wall with no painting placed on it. We say there's "nothing" there. We drive thru a corn stretch of Route 80 in Iowa and claim there's "nothing" out there. Some ppl try meditation but fail, bc they say they can't sit still and "do nothing". Someone stays home on a sunday to recharge and when asked, say they "did nothing".

    Before, I thought who I was was in large part tied to what I DID. If I wasn't DOING anything, I could fall into BEING nothing. There is a tangible "nothing" in American culture that ok's someone "doing nothing". In other words, you have to "do something" pretty much at all times. I don't want to get into the myriad of reasons for that mindset. I do want to question the constant in motion obsession, and look at its supposed opposite.

    I'm right in the middle of a move, sitting in a hotel room with hefty bags all over and 2 confused looking cats. It's 5 degrees out. I keep telling myself I SHOULD --fill in the blank. There's no earthly reason I have to go out. But my mind continues to invent mini emergencies, things I MUST DO right now. However, I'm already "doing" something; sitting on a couch resting while my body and mind recover from packing yesterday. Is that so hard? And why?

    In 2 years housebound, i slipped off the grid. I still think and feel that which i used to, but now I question everything.
    I question how many of us got tipped over the edge by doing too much. Wearing our systems out, which made them opportune paradises for any mealy biome coming down the pike. Afterward, the cascade, to where we don't know if it was the chicken or the egg. To be clear, this is not a claim overdoing it leads to this hell. It may be a PIECE of the puzzle for SOME of us, depending on our individual situations.

    The space of "nothing" is still something. It's a construct in and of itself. All this running around to Do, Get, Be was also an avoidance tactic for me.... After all, there's no time leftover for deep feelings, reflection, figuring out what I really need, where I stand with much. Pain can get staved off an entire lifetime. Hobbies, projects, things that we deeply want, not the running off to CVS for whatever reason... Or spiritual development, which can happen in deep stillness.
    golden, Lala, beaker and 4 others like this.
  11. Sparrow

    Sparrow Senior Member

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    Absolutely. I still fall prey to that drive to accomplish my self-inflicted goals more often than I'd like. I am trying to learn to remind myself that I am not doing nothing when I choose to lie quietly. I am actively healing, which is the most important thing I could be doing right now.
    Last edited: Dec 9, 2013
    Singout, allyb, S.A. and 6 others like this.
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I wish this crap was recognised as real. Then people could get disability a lot easier and be able to rest properly?
    allyb, rosie26 and Beyond like this.
  13. PegS

    PegS

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    I still need to sleep or rest in bed at least 9 hours a night. But as a kid I also needed more sleep than most, so I think that is normal for me. I was at least 8 years of sleeping whenever I could--a nap in the morning after taking my daughter to school and then a rest in the afternoon before picking her up. She went to bed at 8 p.m. and I was in bed by 9 and up the next morning around 7 to get her ready for school. I literally did not do anything while she was in school--maybe laundry and sitting while folding laundry. When I got better enough to work a few hours a week, I still napped in the afternoon or morning and went to bed around 10 at night. I rested when I could even if I didn't feel particularly sleepy. I always felt weak. Now I rest when I feel the least bit tired and make myself stop working on whatever by 8 p.m. so I can wind down a couple of hours before bedtime. I do not get out of bed (except for the bathroom) until I have been in bed for 9 hours at least. I never worry about whether I am getting too much rest. I do try to exercise muscles every day in some way to maintain some muscle tone, but I do not try to do heavy exercise and don't exert myself for long unless I am doing some chore that requires some strength--like when we chopped a 3-inch layer of ice off our driveway last week. My husband is 76 and I am 64 and we were careful how we worked and hydrated ourselves. I don't use my energy unless it is necessary and purposeful.
  14. beaker

    beaker CFS/ME 1986

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    It's also hard to know whether or not that have true ME/CFS. I've met several people who say they have it , but don't come close to CCC. Sometimes it's a label dr.s hand out when they don't know what else to put on a patient. or else they self dx'd incorrectly.
    Also, many who say they are "recovered" have improved and adapted and become so used to certain symptoms that they were "normal" to have. Bell wrote a study on follow up to his pediatric patients from the 80s outbreak in lydonville. The subjects said they were better, but when asked specific questions in his study, they were actually still sick .
    Beyond likes this.
  15. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    I always say I am better, though when I have to be honest with myself and the interlocutor I gotta say I am still ill. You always try to lie to yourself or try to see the sunny side of things, what has improved etc. For me at this time anyway, the sheer truth is too ugly to look at his face directly for long. The sheer truth is comparing yourself with someone healthy of your same age, or even, why not, with the healthier you pre-illness... :(
    Last edited: Dec 22, 2013
    xchocoholic, beaker and heapsreal like this.
  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I guess im cured if they say 80% is. But I find my 80% is inconsistent and still have some bad symptoms like sleep. But I work a busy somewhat physical job 30 hrs a week but this is probably the reason why my function is inconsistent. Outside of work im a lounge lizard. This is a far cry from pre cfs. My normal pre cfs was probably 120???
  17. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Some of us have been ill for so long that even if we were 100% healthy we would not function at the level we were at pre-illness. I wonder if that is why some people never recover beyond 90% - 100% now is the same as 90% pre-illness.
  18. SOC

    SOC Moderator and Senior Member

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    If we're counting as low as 80% of pre-illness functioning as "cured", then my daughter is "cured". Her function is somewhere in the 90%s. We do not consider her cured, however. We believe she's in remission.

    Despite her 90-something % functionality, my daughter still has a significant number of abnormalities -- hypothyroid, low blood volume, low NK cell numbers (good function, though), and other immune abnormalities. She takes several symptomatic treatments and Valtrex to keep EBV and HHV6 suppressed (that was the hope, anyway). She is careful to eat well, get lots of sleep, doesn't do heavy exercise, and is careful about exposure to serious infections.

    We are very well aware that she could easily go out of remission any time. In fact, her EBV and HHV6 titres are climbing already. :( We continually fight to keep her level of functioning with the hope/expectation of better treatment and possibly a cure in her future.

    In anticipation of the question, she is diagnosed with ME/CFS by three of the top specialists -- Dr Lapp, Dr Lerner, and Dr Rey, so we're quite confident she has ME/CFS. She fits the ICC criteria.

    I believe that there is not a cure for true ME/CFS, yet. I do believe that time will come, though. I also believe that many, but probably not all, of us can get significant quality of life improvements with proper treatment right now. Sadly, the majority of us cannot get proper treatment. :(
  19. Graeme

    Graeme almost there...

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    It's far more common that you hear the 90% well number. Personally I'd settle for that, but I know I'd never stop looking for the other 10%.

    It's reported that 90% of those who get this disease as kids go on to something close to a full recovery. I find this number may be somewhat inflated and merely reflect cases of mono.

    Some of the adult onset recoveries that interest me are those that received TPN and then went on to regain much of their functioning:

    http://aboutmecfs.org/Story/MECFSRecovery.aspx
    http://www.noeticholdings.com/ken/
    http://books.google.ca/books?id=DtQ...wAg#v=onepage&q=step sinatra earthing&f=false

    Other stories I believe shed some light are those of biotoxin avoiders like Lisa Petrison and Erik Johnston.

    Also I know a woman who recovered from the nightmare ME/CFS scenario (darkened room with earplugs for a few years) after a stem cell infusion. She considers herself 90% well. All she needs to maintain this is a daily dose of Mutaflor.
    S.A. likes this.
  20. SOC

    SOC Moderator and Senior Member

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    It's exactly like that! :) We're thrilled that she's fully functional, but we're not stopping here. We continue to look for ways to get up to 100%, and of course, are hoping for a true cure.

    I believe Dr Bell reported that many of the (former) kid patients originally reported as recovered were something like my daughter -- they have reasonably normal lives, but had to make varying degrees of accommodation. They were not cured, just mildly ill and coping.

    I agree that in addition to those young people, some of the "recovered" couple have been cases of Post-viral Fatigue which cleared up spontaneously withing five years. I'm not sure, though, how one distinguishes between PVF and ME/CFS in the early months/years of the illness. ;)

    TPN?

    Do we know yet if biotoxin illness is the same as ME/CFS or is one of the ME/CFS-like illnesses that often get lumped under "CFS"?

    This one doesn't surprise me.

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