1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
Discuss the article on the Forums.

Anyone improve from bed/housebound to high level of functionality?

Discussion in 'General Treatment' started by Ocean, Oct 24, 2011.

  1. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    Using the PR rating system for activity below, how many have gone from being somewhere between 0 and 2 to improvement at a level of 3 and above, especially the much higher levels?

    -If you did improve from a very low level to a much better level of functionality, what did you do to get there, or did it just happen on its own?

    -What level where you at at the lowest and highest?

    -How long did improvement take?

    -What were your primary symptoms when at low levels?

    -Did you have coexisting conditions that made recovery harder or more complicated?

    Answers to any or all of these would be of great interest to me. Or if there are other threads covering this, I'd love if someone could point me to them. Thank you so much!

    0 - Bedridden constantly
    1 - Mostly bedridden
    2 - leave house once a week, concentrate 1/hour a day
    3 - leave house several times/week, two hours work/activity at home a day
    4 - 3 to 4 hours of work/activity a day
    5 - four to five hours/activity a day
    6 - six to seven hours/activity a day
    7 - able to work full-time but with difficulty
    8 - near-normal activity level but still symptomatic
    9 - normal activity level, mild symptoms
    10- fully recovered
     
  2. Jenny

    Jenny Senior Member

    Messages:
    1,230
    Likes:
    196
    London
    Hi Ocean

    I first got ill in 1982. Got worse in the first 3 years, and was mostly 1 on your scale,but occasionally was a 3. Then, from 1986-88 improved to mostly 9. Main symptoms were extreme exhaustion and weakness, shortness of breath, some autonomic symptoms, chills, some pain, particularly neck and shoulders. No co-existing conditions. During this time I had colonic irrigation and then acupuncture and Chinese herbs, though it's impossible to say whether these led to my improvement. Continued at mostly 9 from 1988-2003 (though had occasional relapses when I was bedridden for a few days or a couple of weeks).

    Started to go downhill in 2003 after developing fibromyalgia after a skiing accident. Now I have long periods (6-18 months) of 0 on your scale, but also some periods (several months) of 4. I have lot more pain now and much more severe autonomic dysfunction. So I am worse than before, but very thankful for my long virtual remission.

    Hope this is helpful.

    Jenny
     
  3. Esther12

    Esther12 Senior Member

    Messages:
    5,302
    Likes:
    5,627
    I haven't improved that dramatically, but have gone from 2 to 3 - largely as a result of having more money I'm afraid, so hard for others to replicate. More money meant I could manage my energy a lot more easily, and avoid pushing myself to exhaustion, while being able to be a bit more active. Having more money for food/ready meals/takeaways was really helpful, both for managing energy, and I think I have a strange metabolism and was not eating enough previously (4 meals a day now). I've been able to do some Pilates recently, so my activity is more focused on developing core strength, which is meant to be useful for lots of things. I've not been improving much recently, so may have plateaued... my income has lowered again too, so I'm living off the savings I built up over the last couple of years. Hopefully I'll keep improving to the point where the costs of living are lower/I can do some paid work at home by the time my savings run out.
     
  4. biophile

    biophile Places I'd rather be.

    Messages:
    1,391
    Likes:
    4,675
    I realize that it would be difficult to do so, but a general criticism I have with all these type of scales is that it doesn't factor in time efficiency. For example, instead of being able to concentrate good for 1 hour, what if you can "concentrate" poorly for 2 hours but only get 30 minutes worth of actual work done? It also doesn't factor in the complexity or intensity of different types of tasks and their specific consequences.
     
  5. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    Biophile,

    For me this one, which I found on this site's about me section, seems to be a decent guide. It seems to focus on a very general overall functionality. Right now I'm basically housebound other than doctor's appointments which my husband drives me to so it's easy to find my spot on the scale based on that. A while ago before a recent crash I could leave the house a bit more and it's easy to find that spot on the scale and see my regression in terms of number. It's not perfect but I find it gives me a decent quick assessment of how I and others who've ranked themselves are doing. Do you find it's hard to pick a number on the scale that basically sums up your current functionality in an overall sense?

    Esther12,

    I totally agree how much money can help or lack of it can hurt. I remember reading something I think in the book "How to be sick" about illness being the great equalizer that hits people of all types, incomes, and so on. But I disagreed. With a lot of money so much of the limitations of this illness could be dealt with in very manageable ways for me. The experience of the illness I believe would be far different for me if my finances were different. From being able to live someplace quieter, own a home that adaptations could be made to, have someone to drive me places as needed, help with cleaning, shopping, cooking, maybe even a doctor who makes house calls, be able to pay for medicines, supplements, specialized testing and so on. Money can make a real difference. I'm sorry your finances are more precarious now. Mine are too due to not having been able to work for a long time. I hope things improve for you.

    Jenny,
    It's so great you had a long improvement. I wonder if the treatments you tried helped or if it would have happened anyway. I'm so sorry you then were hit with fibromyalgia. I have a fear of getting into an accident as I know it can trigger fibro for those who are predisposed.

    Thanks for sharing everyone.
     
  6. xrunner

    xrunner Senior Member

    Messages:
    601
    Likes:
    277
    Surrey
    For a good couple of years I was between 1 and 2 on that scale. I'm now at around 5.

    -If you did improve from a very low level to a much better level of functionality, what did you do to get there, or did it just happen on its own?
    It didn't happen on its own, I just tried one treatment after another until I started to get it right.

    -What level where you at at the lowest and highest?
    1 at lowest, 5 at highest.

    -How long did improvement take?
    When on the right treatment I could see improvements on week by week basis but it's been very slow. I have never had big jumps, just small steady steps forward since 2009. However, as I am always trying treatments there have been a couple of not appropriate ones that blocked my recovery for at least a year overall.

    -What were your primary symptoms when at low levels?
    Absolute fatigue, malaise after activity, recurring flu-like symptoms often triggered by the slightest overactivity.

    -Did you have coexisting conditions that made recovery harder or more complicated?
    No.
     
  7. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    xrunner

    Thanks for answering all that. Would you mind listing some of your treatments? Or is there a post where you've discussed them that you could link me to? Thank you so much,
     
  8. rydra_wong

    rydra_wong Guest

    Messages:
    514
    Likes:
    31
    Velha did. You might want to search for her posts. She did it with Fredd's protocol and lots of carnitine (which bypasses Fredd's protocol)...meaning she did her best to get methylation working and then took what her methylation cycle should have been producing to boost it up since she could never get it high enough. I do not know the dose or exact type of carnitine but it was quite a lot and she said that now she can play with her kids.
     
  9. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    Thanks a lot Rydra, I'll do a search for her.
     
  10. xrunner

    xrunner Senior Member

    Messages:
    601
    Likes:
    277
    Surrey
    Ocean
    you're welcome. See below.

    UNHELPFUL / DAMAGING TREATMENTS:
    - Graded exercise
    - Myhill/mithocondrial protocol
    - Martin Pall's protocol
    - Low dose immunotherapy
    -Oxymatrine/Astragalus/Vit A and D
    - Various detox protocols

    MOST HELPFUL
    - Kinesiology
    - Ivermectin
    - Probiotics (hundreds of billions)
    - Antibiotics: cycles of Minocycline-Azithromicin-Rifampin and Metronidazole
    - Anti-biofilm supplements


    This is a reflection of my own experience. I'm aware that others may have been helped by some of the treatments that I instead found counterproductive.
    Over the years, I have tried a plethora of different stuff and these are the ones most relevant in terms of results. Most of the treatments I have tried, not mentioned, did not produce any results, instead they were just a money drain.
    There are two treatments that I have never tried. One is antiviral medications as I was personally never convinced by the strength of the results reported in various small patient studies (Montoya, Lerner), and in the meanwhile my viral load for various pathogens has normalised making them not relevant at this stage.
    The other is GcMAF which I've been looking at closely but I have placed on the back-burner for now, as in my opinion, information about side effects and efficacy is still a bit thin at this stage.
    I think I probably tried everything else under the sun.
    Kinesiology is not a treatment in itself but it helps avoid harmful treatments and overcome obstacles that successful treatments can throw in the way. I wish I had known about it years ago. However, it is more an art than a science and out of four practitioners I have tried, only one has really helped in the way I have described.
    All the best
     
  11. rydra_wong

    rydra_wong Guest

    Messages:
    514
    Likes:
    31
    Also, Idie, Mogy, and Red02's wife did -- see the B12 chelation main topic and the "Just like Fredd?" post.
     
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,106
    Likes:
    6,089
    Albuquerque
    Serg1942 has improved from bed-bound/house-bound, to a first year medical school student living in a student apartment. You'll see some of his posts here but he is too busy to post much now and also runs a Spanish forum.

    Treatments: Simplfied Methylation, LDN, GcMAF, Nexavir, injected hydrox B12, liposomal glutathione, liposomal Vit C, yaeyama chlorella, & gut ABX.

    Best,
    Sushi
     
  13. taniaaust1

    taniaaust1 Senior Member

    Messages:
    8,061
    Likes:
    5,043
    Sth Australia
    I was at a 0 level for 9 mths and had to be cared for in bed, I fully recovered (full remission) to a level 10 for 2-3 years (I even went and did a 38hr marathon without crashing). It took 3-4-5 years to recover very slowly from that bedridden state, the more I recovered thou the faster I recovered. I recovered by learning to pay attention to my body and trying to never push my body past its limit along with agressive bed rest and trying to avoid anything which would make me crash.

    (Im nowdays thou at around a 2.5 level due to that remission of 2-3 years didnt last.. I went back to all my old life and ways and one day I just crashed again and then was pushed in the crashed state so further crashed so are now where I am today)


    Extreme exhaustion (not able to hold up head, trouble sitting, trouble feeding myself with a spoon and eatting, completely unable to move at times due to weakness, unable to stand at all), sore burning throat, severe all over pain (bone, muscle and skin), shaking, unconsciousness etc (lots of symptoms, Ive had 90 different symptoms with the ME).

    I had FM (thou dont nowdays.. that improved as the ME did and didnt come back when the ME did).
    I didnt have MCS in my very bad ME early years but do have it now thou it has improved.
    I didnt know it at the time as I didnt see my blood test results till many years later, but I know nowdays I had bad hypoglycemia too.
    I do not know if I certainly had POTS in my bad ME years but if I did.. I must of recovered from that too during the remission. I do have POTS nowdays.

    Anyway from my own experience I say recovery is possible esp in early years of this illness no matter how bad you are. But never trust you cant even get this again..so be careful even if fully recovered. (If you come down with something and are sick a day or whatever.. do take it a little easier as you can get all this back even if 100% recovered. Whatever our issue is can be "retriggered". Something is wrong within our bodies).
     
  14. rydra_wong

    rydra_wong Guest

    Messages:
    514
    Likes:
    31
    That really bites, Tania. It's hard enough to have a debilitating health problem the first time around but when you think you've licked it only to sink back in it is quite another turn of the screw. It's good to see you recovering a bit of your positive attitude though as I read that message as both a warning and an encouragement to others. Take care of yourself.
     
  15. taniaaust1

    taniaaust1 Senior Member

    Messages:
    8,061
    Likes:
    5,043
    Sth Australia
    Thanks . Yeah my positive attitude is back :) .

    and yes.. mentally was far worst I think crashing into this illness the second time around (thou I wasnt as physically as bad as the first time), but it was mentally/emotionally worst I "knew" just what hell I could be in for and to have all ones dreams and hopes taken away a second time .. yes that bites.
     
  16. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    Thanks everyone for the input. It's really interesting, but also overwhelming to think how individual the improvements seem to be. There's no shortage of things to try and it feels like something that helps one person can hurt another and vice versa. Hard to come to any conclusions to apply to myself. Trail and error, I suppose. It is good to hear that people have had improvement, even though relapse seems to always be a possibility. Thanks for all the info.
     
  17. Freddd

    Freddd Senior Member

    Messages:
    4,546
    Likes:
    918
    Salt Lake City
    9 years ago I was at 1-3 on your scale after 16 years and some of them all the way to 0 for almost a year. Today I'm at 10, fully recovered, considering my age (it pains me to say that).

    http://forums.phoenixrising.me/showthread.php?11522-Active-B12-Protocol-Basics
     
  18. Charles555nc

    Charles555nc Senior Member

    Messages:
    460
    Likes:
    68
  19. Athene

    Athene Never give up

    Messages:
    1,130
    Likes:
    153
    Italy
    I was at level 0 for a year, completely bedridden.
    My mother had to feed me baby food because I could not chew, my family washed me and carried me to the toilet I forgot how to speak adn understood little, so my ability to communicate was very limited. I was in something like a strange comatose condition between waking and sleeping for a year.

    I gradually got better and finished my degree at uni, I was about a level 8.

    I spent the next 26 years with CFS varying between remission, where i was at level 8 or 7, and relapses where I was unable to work and about level 1 or 2 for up to 6 months at a time but never anywhere near as bad as the first time. I had bad brainfog but could always talk and read etc.

    I never had any treatment other than taking megadoses of magnesium, zinc and vitamin C. The main thing that made me get better was resting in bad all day, doing nothing and having no pressure to do anything.

    I've now had blood tests (2 years ago) that confirm the following infections
    Chlamydia pneumonia
    mycoplasma pneumonia
    Lyme disease
    erlichia
    babesiosis
    epstein barr (high titers, fluctuating)
    HHV (high titers, fluctuating over time)
    Intestinal candida

    The two viruses were acquired several years after the initial onset, I remember very dramatic onset of both of those which caused major relapses. I am very convinced that the other infections were all present from the initial onset.
     
  20. Charles555nc

    Charles555nc Senior Member

    Messages:
    460
    Likes:
    68
    I tested positive for almost those exact same viruses. I had periods where I had thoughts of cutting myself, suicidal thoughts, passing out etc etc. My initail onset was a tick bite, but I never tested positive for lyme.
     

See more popular forum discussions.

Share This Page