1. Patients launch a $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!
The Chronic Fatigue Initiative and Interview with Mady Hornig
In a follow-up article to the recent IACFS/ME conference presentation in San Francisco, and after speaking at length with Dr. Mady Hornig, 'searcher' delves deeper into the impressive work being completed by the Chronic Fatigue Initiative, and focuses in on those cytokine results ...
Discuss the article on the Forums.

My son & i are giving the lightning process a go on this week

Discussion in 'Alternative Therapies' started by coxy, Mar 20, 2010.

  1. coxy

    coxy Senior Member

    Messages:
    174
    Likes:
    1
    I'm not going to be drawn into any arguments on this one. I'm just letting you know (the one's that are still open minded enough to want to listen) in a honest way how a 43yr old mother and her 12 yr old son have gone through this process and it has made a difference worth more than 700 in my book or even 7 x that amount. Yes we are lucky enough to be able to afford it. In 6 mths time i may be saying different, i don't know yet. Or maybe i should disappear like other people that have had a positive experience with this and leave you all to listen to the people it hasn't worked for. In my book i would prefer to hear from the people amongst us it has made a difference for, i'm not into listening and wallowing in failed attempts at whatever treatment people have tried. I've always been interested in trying things that have helped some of us.
    Don't let the negative people on this forum or any other forum put you off trying this, it's worth it even if i only get a few months good health, which i'm certainly not hoping that's the case.
    i won't be posting again now as i can sense certain people are ready for a fight, and that's not going to help me at this stage. The one's amongst you that have shown interest and would like to give me a personal post, i'm willing to answer any questions you may have.

    As for the query about how i could suddenly get warmer, it's all down to the fight or flight response to pain with symptoms. Our body is permantly out of balance. As soon as you get the training on how to calm down and fight the symptoms when they come i.e try to stop them before they start, your body will start to rebalance itself, and digestion, temperature, etc etc will all start to improve.
  2. Esther12

    Esther12 Senior Member

    Messages:
    5,084
    Likes:
    4,839
    Hi Coxy.

    I'd be really interested to have you continue to post these updates. You could just ignore any replies to the thread if you thought they might be a distraction.

    I find it hard to take the LP seriously, but it's interesting to read someone's experiences as they go through it. You converted your daughter yet?
  3. fingers

    fingers Senior Member

    Messages:
    210
    Likes:
    7
    SW Endland
    All sort of plausible, Coxy, once you get past the marketing, which is why I did it too. I just couldn't get it to work for me. Maybe I wasn't ready, or maybe all the factors relating to me mean that it's not appropriate for me at this point in time.
    Like I said, with current knowledge, individuals have to find out for themselves.
    ......and i think you're right, you need to get on with your life now. Enjoy your holiday. Maybe give us an update in 6 months?

    If Phil Parker's theory is right you may test negative for XMRV now.
  4. Hope123

    Hope123 Senior Member

    Messages:
    1,141
    Likes:
    531
    I didn't read all these threads but wanted to interject that one of the few pediatric studies out there show a partial-full recovery rate of about 80% in adolescents with CFS and the person who conducted the study (Dr. David Bell in the US) and saw all the patients over several years thought it was just due to biological resilience of the younger sufferers and not anything particular he or they did. So, I'm not sure if LP really is helping these folks or if it is just the natural history of the disease in younger people (even regardless of if they have enterovirus, EBV, XMRV, etc. -- jury's out of course).

    The problem is that Dr. Bell unfortunately is seeing relapses in some of the kids now and even those who are "recovered" still have exacerbations 15 or so years out now. He's doing a follow-up study on them.

    So I wish you well but this is what I know.
  5. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

    Messages:
    1,718
    Likes:
    375
    UK
  6. Lily

    Lily *Believe*

    Messages:
    665
    Likes:
    3
    Hi Coxy

    Thanks for all the info. I wish you all the best and hope you have a wonderful time in Florida. As Esther said, I too would be interested in having you continue to post updates. I understand though that you don't need the negative influences.

    Be well, Coxy. Enjoy every little thing you can!

    Best Wishes!!
  7. Countrygirl

    Countrygirl Senior Member

    Messages:
    765
    Likes:
    411
    UK
    Dare I make a suggestion and if I say it very quietly, will you promise not to take me out and shoot me? :worried::worried::worried:

    As Coxy has found LP helpful, as have a number of others, and despite the ethical concerns and lack of follow-up, could we discuss whether there is any foundation to LP's hypothesis that over production of adrenaline is the cause of the symptoms of a number diagnosed with ME? Is that total heresy? Probably! But could we put this to rest once and for all. It is easy to be negative given all the failures, but it would be good to be able to argue from a scientific basis why this process is a total scam - if it actually is. It certainly seems to work for some, in the short term anyway. I would like to know why.

    I have researched this in a limited way and I cannot see how over-production of adrenaline or an over-active sympathetic system can produce all the symptoms of this illness. I remember too that Dr Vance Spence or it may have been Dr Neil Abbott of MERUK said that there is no evidence of overproduction of adrenaline in ME. Yet, maybe it can explain the sleep issues, the wired feeling, the twitching jumping muscles and perhaps some others. However, how could it affect the immune system, cause POTS or OI, MCS, ataxia, cognitive dysfunction, and all the rest. Could any of our resident science bods explain how LP could increase the body temperature for example, as it seems to have done for Coxy. (I hope she doesn't mind me asking this....sorry Coxy if you do...perhaps you had better avert your eyes if you are reading this.)

    It would be really good to put this one to bed from a scientific perspective and seriously examine its claims.

    Now, who is going to fire the first shot.....I'll come quietly.........
  8. Countrygirl

    Countrygirl Senior Member

    Messages:
    765
    Likes:
    411
    UK
  9. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    42
    Santa Rosa, CA
    Hi Countrygirl.

    No shooting here. I think this is an excellent question.

    Would you be so brave as to start a thread on this? It's a basic question that comes up around any number of treatment protocols including Amygdala Retraining and even a meditation practice. What role does an overactive nervous system play in driving our symptoms? If we're able to help our system settle down, does that lead to a decrease in symptoms? To a cure? I think these are good questions. I would like to see the research. Even with the XMRV hypothesis, might lowering our stress threshold enhance our healing?
  10. fingers

    fingers Senior Member

    Messages:
    210
    Likes:
    7
    SW Endland
    Think you mean raising our stress threshold GN......lowering our stress levels perhaps?

    I can only speak from experience.....

    When I was working in corporate land as a senior manager in IT, with ME, I had to schedule 3 x 2 week holidays during the year, so that I could be ill. My body seemed to work out that it had to keep itself together (well 50% or so) when working, but could let go on holiday. I think the immune system can only work effectively when relaxed, and people without ME often find the same thing, so nothing remarkable here.

    Now, I'm self-employed and live in an idyllic part of the world. Apart from kids and PMT (sexist comment I know, but a factor nonetheless), my stress levels are a fraction of what they were.

    In spite of this, there is little change to my "condition". All the same symptoms are there. The only variable for me might be the frequency and severity of infections - I usually get colds, upper respiritory infections, which I think is my genetic weakness, although this was not there pre-ME. My symptoms have never gone away since 12th February, 1991.

    And yes, regarding CG's initiative and question here (I know I'm biased, but isn't she smart, eh?), a thread would be good, as would a proper study.
  11. fingers

    fingers Senior Member

    Messages:
    210
    Likes:
    7
    SW Endland

    Sorry, Suzy, your timely post got bypassed (does anyone find that happens so often here?......not to Suzy I mean, but generally)

    Pretty typical of "my mate" Phil I'm afraid. His marketing department is crap, and his PR is woeful. He might disagree and rub his company accounts into my face. Well, fair play, if that's what you're about.

    I actually think that there's a strategy available to him which would leave him high and dry. There seems to be little question that a fair proportion of LP customers end up satisfied, or at least they "do satisfaction". If we could get some intelligence on the population of customers that this applies to, Parker wouldn't have to work on his PR or marketing at all. He'd have a clearly defined market, a fantastic product, and possibly not too much competition. With Esther Crawley on board, he'll be flying.

    OK, CG, looks like project number 28......?
  12. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    42
    Santa Rosa, CA
    Yes, probably. :ashamed:

    What I meant was helping our bodies be able to handle stress more effectively, not becoming overwhelmed by small stressors. Less stress is good (and I'm using stress in a very broad, non-specific way). More useful would be if we could handle it better, have our bodies able to return to homeostasis more easily and quickly.

    Raising, lowering; :worried: I think I mean raising? (I will defer to you at this time, fingers, as I can't think.)
  13. Countrygirl

    Countrygirl Senior Member

    Messages:
    765
    Likes:
    411
    UK
    I've just crawled out of bed to the witching hour of midnight having had my usual one hour's sleep with the aid of a dose of zopiclone. I though I'd log on to you folks who provide me company whilst all around me continue in the blessed land of nod. I have , in my semi-stupor, stumbled on Vanderbelt's (huh? spelling...shh don't wake half-dead neuron) research promoted by Dr Judy. I can talk terrible rubbish during the witching hour, but it is a research into the effects of the sympathetic nervous system on maintaining our illness, particularly POTS and NMR. Now, this is not a million miles away from our Phil's claim that we are ill because of our hyperaroused state. Okay folk, please get your teeth into this one. Don't let us throw the proverbial baby out with the bath water. Remember Gupta - his course Cort found was helpful and this bears some similarities with LP, although it seems to be much more ethical with no hint of Scientology-like characteristics or devious, underhand, money-building empires off the backs of the sick. Forget Parker, lets see if we can examine the facts and design our own de-arousal programme, should it be relevant. How about it? Anyone game? Shall we, if there is sufficient interest, begin a new thread? Can we return the ME world to homeostatis? I throw done the gauntlett. Anyone here done their homework on neural plasticity? I've puchased two books but haven't yet read them. Might be a good start.

    Right, first we need exercises to make the parasympathetic dominant. Breathing exercises and meditation would be a good start. Could we do this as a group activity? Then examine NLP, PR style. Any takers? Watcha think. Shall we experiment? Who's game? If it fails, well there is nothing lost...but if it doesn't......And perhaps Gupta graduates could give us some guidence. So, if we start on Monday we should all be up and running by Thursday. (Well, I did say it is the middle of the night.)
    Seriously though, I think it is worth a try.
  14. DavidJ.

    DavidJ.

    Messages:
    70
    Likes:
    0
    Germany
    i think its a good idea countrygirl. i think that these techniques can be very positive tools.
    basically everyone can put together a new cfs program and call it whatever they want .
    i call mine the " sophisticated hypothalamus reverse training" . :Retro smile:

    i would mix emotional freedom technique ( tapping meridians), with positive nlp affirmations like the lightning process uses: for instance " i am wonderful because i have decided to get healthy . i will only think in a positive way and heal myself"
    then something like yoga breathing techniques from gupta , like alternate nostril breathing.
    oh and positive visualizations ,like picturing oneself healthy again, also from gupta.
    and then of course the background music:

    http://www.youtube.com/watch?v=utA9yENx-QA&feature=fvw


    enjoy my program , i charge 0,0 dollars for it.
  15. DavidJ.

    DavidJ.

    Messages:
    70
    Likes:
    0
    Germany
    oh and if one of my responses has induced coxy to stop posting, then i am sorry. i am really happy for her that she feels better, thats a fact.
    my question as to where sick people get so much money from was a general one, and i think its justified. i still think that sick people have to pay too much for a basic program like this, i even read about a desperate person who had to borrow all the money from friends and unfortunately made no progress .

    and then every cfs sufferer has to be aware of the fact that lp is basically saying that this disease doesnt exist. that you dont have any viruses, and its all in your mind . so what about people who are xmrv positive? would parker also tell this to people with aids?

    listen to this girl who got cured by lp. she is confirming this.

    http://www.youtube.com/watch?v=95nAkqNJqj0
  16. Adam

    Adam *****

    Messages:
    495
    Likes:
    1
    Sheffield UK
    If you have an active virus in your body you have symptoms. The common cold is a good example. Contract cold virus. Have symptoms. Feel less than 100%. Body fights off virus. Return to full health. If for whatever reason the body is unable to fight off virus, symptoms remain. Or get worse.

    My point.

    LP/Amygdala/Gupta and lets not forget everyones favourite here, GET/CBT, address the so called negative or destabilising effects on the body, which some argue are present AFTER the virus has gone. They also address 'illness beliefs' by basically the same approach of positive thinking, no, you don't have a virus.

    I don't see the difference between Phil Parker and Simon Wesselly. They are pedalling one and the same, with different packaging. They are 'curing' the same patient group. Both Parker and Wesselly are smart to enough to realise they will still have a patient group when the facts about XMRV are established. By that I mean it will be pointless them trying to rehabilitate the sick. They would prefer not to have failures on their score sheets. They cannot perform miracles. They can help to rehabilitate the post-sick.
  17. Countrygirl

    Countrygirl Senior Member

    Messages:
    765
    Likes:
    411
    UK
    I haven't got time to follow this up, Adam, as I'm off to a family funeral, but, yes, I do agree with you. However, processes of this sort do help to some extent, according to many people who have tried them. It is easy to drive a coach and horses through the nonsence, overblown claims by the LP fraternity but I'm thinking of Gupta's programme mainly (which may have some elements of the LP incorporated) and I understand that a number of people find that it improves their quality of life. I believe Cort wrote about this as he found it to be helpful. My argument is why don't we look into this and take what is of use and apply it, providing we can base it on scientific principles - or maybe even not? Science doesn't yet have all the answers. It might just be a useful tool to help alleviate some of our symptoms and, while we are waiting for a'cure'..antivirals or whatever....why not use anything that can relieve our symptoms and give us a better quality of life? My basic argument is don't lets throw the baby out with the bathwater.

    Have you read about neural plasticity because I'm wondering if this may be a key here?

    Sorry if my post doesn't make sense. No time to check it through.
  18. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

    Messages:
    1,718
    Likes:
    375
    UK
    I'd love to hear KCL's views on LP, Adam.

    Suzy
  19. DavidJ.

    DavidJ.

    Messages:
    70
    Likes:
    0
    Germany
    adam: i havent read anything by wessely . i think he is the guy who says its all psychological, right?

    however, there are so many accounts from people who got ill practically overnight. most can point out one specific date when it all began. did they all of a sudden decide that they would like to be ill in their sleep and then it really happened the next morning?
    like i said before, he doesnt dare to say something like that to people who have hiv/aids.
  20. Adam

    Adam *****

    Messages:
    495
    Likes:
    1
    Sheffield UK
    I agree. To put it in its simplest terms without the unequivocal evidence of an active virus medics cannot treat a patient (other than symptom control). That has been my experience. My consultant (infectious diseases) has always said that whilst he is unable to give any other diagnosis than CFS, he quite clearly believes my illness to be real, and organic. I am sure he is not alone in NHS in being supportive of a biological cause for CFS/ME. In his summission to the pensions authority when I applied for ill health retirement, he said my prognosis was very poor.

    I seem him twice a year. Next appt 1 April 2010. I will gauge his opinion re XMRV and also try and ellicit his views on the Wesselly school although I accept doctors are not keen to comment other doctors I imagine if I pose a question in a certain manner I should be able to 'judge' his response.

See more popular forum discussions.

Share This Page