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

DavidJ.

Senior Member
Messages
111
Location
Germany
havent seen this before, thanks.
i read that this parker guy plans to set up lp branches here in germany too. i really hope that germans dont fall for this...
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
We are often asked if once you have recovered using the process is it possible to relapse (which of course is huge fear of many M.E sufferers as it happens with so many other approaches). The simple answer that people report is NO, not if you continue to use the process as you have been taught it.

To me, this is the danger. If/when you do relapse, it is now your fault for not continuing "to use the process as you have been taught," not that there might be something missing in the method itself.

Participants are now in a lose/lose scenario they experienced some benefit but now they're experiencing a return of symptoms and are faced with the following:

disappointment at losing their improvement (they worked so hard and paid so much)
surprise that it's not working for them (but they tried really hard)
a need to deny and ignore their symptoms (because after all, they've recovered)
or to blame themselves (because if they were doing it right, they would continue to be well)
a loss of connection to the very people who offered them so much hope

This is all very sad to me.
 

coxy

Senior Member
Messages
174
update on lightning process after day 1

hi, I thought i'd update you so far.

It was harder than i thought and a lot of info to take in for my very foggy brain! i did keep mentioning i couldn't take in what she was saying, but she assured me that my unconscious brain was taking in all the info.
My 12 yr old has found it very difficult to understand as i knew he would. The trainer did simplify it for him and there was only me & my son doing it on our own (she never does group sessions).
Last night i felt really upbeat when i got home. i did something different as she suggested, and did the 3 min jog on the wii fit without a problem! i thought of Frank Lampard (chelsea football player) running around on a football pitch while i was doing it, which was the player my son chose as his energy person.

There was quite a lot about links with family members that have unconciuosly (sorry my spelling hasn't improved) been negative in the past/or still ongoing which i found difficult to believe. Also a lot of trying to change the language we all use to a more positive form, which i thought i already did, but apparently not!!

I don't think so far anything remarkable has happened, certainly not to my son. I have been able to fight a lot of the symptoms when they come, which is a bonus. I'm wondering if good old adrenline is working over time at the moment though. My head is still as foggy, which is my main symptom always.

I will keep trying to do the process though to see if what she claims is true. It's all about the unconcious mind which we have no control over, causing us to keep our illness and symptoms going, it's not our fault at all, but apparently they have ways to retrain the brain and remove our symptoms.

Day 2 starts at 10am until 3pm. i have a feeling we'e going to get told off more today for any negative action or thought. Still remaining positive as it's all working with the unknown to me, and i can't really comment on something i don't understand if it has been successful for some.

I'll keep you updated. By the way, i haven't once been told to keep anything secret ( as i had heard in the past), or not to talk about it. i was only told not to talk about any of my symptoms at home last night, which we rarely do anyway.
 

mermaid

Senior Member
Messages
719
Location
UK
"but apparently they have ways to retrain the brain and remove our symptoms".

Hi Coxy - re the above - as long as they only remove the symptoms! (need to insert smiley here but don't know how!)
Hang on to the other bits of your brain please .... good luck with the rest and thank you for the update.
 

coxy

Senior Member
Messages
174
2ND DAY OF LIGHTNING PROCESS.

hi everyone an update as promised. We arrived back at the venue 10am this morning. I had taken a phone call just beforte we left from an exam officer to sort out my daughter with ME's GCSE's that she's taking at home. All the same awlful brain fog came back while i was on the phone, memory issues etc, so by the time we got to our trainer i was suffering again badly!!

We both walked in looking awlful ( i was aware of that) as she pointed out later in the day. I had got quite dispondent about the whole thing and started questioning an awlful lot. she was quick to point out a lot of my negative language and wrote all the words i tended to use up on her wipe board. I honestly didn't see anything wrong in my language and both myself and my son got really confused about trying to change our language. Apparently the whole world, schools etc use negative language. We were not allowed to use the word HARD, DIFFICULT etc, instead use softer words like CHALLENGING instead. Instead of saying I'VE GOT to go in the shower, say I CHOOSE to go in the shower. Unless we were prepared to change our thoughts on language we wouldn't succeed with the process.
I still struggle with this, (STRUGGLE is another negative word!), but i listened and apparently sub consiously i would of taken it onboard.

Anyway since leaving her house we have felt a whole lot better. My son has done nearly 1 hour on the wii fit and been out playing with friends until 6.30pm nearly 3 hours!! I feel a milllion times happier and more relaxed. My head still feels quite heavy but i'm working on it. So far definately so good
 

Esther12

Senior Member
Messages
13,774
I hate the whole 'positive language' type thing, but this sounded like something I do anyway:

"Instead of saying I'VE GOT to go in the shower, say I CHOOSE to go in the shower"

It's probably more accurate - and I'm all for encouraging ourselves to think clearly, and make sure our use of language is as accurate as possible. I think that people with CFS can end up using language especially negatively as a way of communicating to others the seriousness of our condition. The fact that CFS is so often treated so dismissively can encourage patients to speak in a way which exagerates our hardships. I'd be a bit surprised if this really made us feel much worse (although it could well have some impact). I think I'm already pretty aware of this sort of thing but still rather poorly, but so far Coxy's reports sound less quacky than I expected.

More generally, I think a lot of healthy people also tend to describe their own choices as if they've been imposed upon them. It's especially irritating when you're ill and desperate to be able to do the things they're complaining about. This sort of negative phrasing doesn't seem to strike them down with CFS though.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Coxy,

Thank you so much for sharing your updates. When I start a new treatment or program I always try and establish an idea of where I am on the disability scale to see how I progress.

If you have the time you might like to track your progress using a scale. I've been using the Hummingbird one lately as I've found the others too brief.

http://www.hfme.org/themeabilityscale.htm

Good luck!
 

coxy

Senior Member
Messages
174
DAY 3 AS I WOKE UP!

Hi, i went to bed last night for the first time like a normal person, not dressed in socks, pj's, jumper, 2 duvets and a thick dressing gown on top of me( as you can probably tell from that i suffered badly with feeling very cold). My feet were warm, even hot in bed, i couldn't fail to notice this. I did the process a few times (it's very very easy) during the evening when i felt the noise getting to me a bit. I was symptom free all evening (pretty much). I woke up again today very early, about 5.30am. I felt fine. I got ready to get up and feel my stiff ankles, which were still there along with aching muscles in my legs from the little jogging session i did on the Wii fit after day 1 (perfectly normal to feel muscle stiffness after exercise though).
Both of us have a lot colour in our cheeks this morning.
One thing i noticed this morning was that the key board on my lap top feels completely different when i'm typing, i CAN FEEL MY FINGERS!! The skin on them doesn't dent inwards anymore, there is blood flowing around them and they are very warm. I'm typing so much faster aswell.

I'm really pleased and if i don't improve anymore than this i would be happy, but i actually think i will get stronger. I'm actually shaking while typing this as it's really exciting.

So far i can't say anything negative about doing this training programme other than i found it extremely boring at times, it's difficult to remain concentrated on it with a foggy brain, but i was told all the info would be going in and it obviously did. I don't feel completely normal as i did pre ME yet, i still feel at bit glazed eyes head
 

Countrygirl

Senior Member
Messages
5,613
Location
UK
DAY 3 AS I WOKE UP!

Hi, i went to bed last night for the first time like a normal person, not dressed in socks, pj's, jumper, 2 duvets and a thick dressing gown on top of me( as you can probably tell from that i suffered badly with feeling very cold).

Ah ha! So I'm not the only one who goes to bed as though dressed for an artic expedition!:D Thick nightdress neck to ankles and long sleeves, topped with a massive mohair cardigan, gigantic bedsocks, two duvets, and an electric fire beside my bed. Nothing much changes in the summer, except the mohair cardigan occasional gets disgarded if the temperature rises much over 80F.

I am more than intrigued by the rest of your post, Coxy. I look forwarded to reading your next episode.
 

fingers2022

Senior Member
Messages
427
Ah ha! So I'm not the only one who goes to bed as though dressed for an artic expedition!:D Thick nightdress neck to ankles and long sleeves, topped with a massive mohair cardigan, gigantic bedsocks, two duvets, and an electric fire beside my bed. Nothing much changes in the summer, except the mohair cardigan occasional gets disgarded if the temperature rises much over 80F.

I am more than intrigued by the rest of your post, Coxy. I look forwarded to reading your next episode.

Absolutely not..........my wife dons similar attire. If ever I DO have any energy, the thought of the disrobing process is the best prophylactic I know :cool: Don't need the fire though, as I'm the opposite, I'm worth at least a couple of kW, especially at night........and it's not passion I can assure you. If I have managed to do anything active in the day, make that 4kW.

Well, Coxy, what can I say? I am genuinely pleased that it seems to be working for you. Given even the anecdotal evidence it seems clear that this sort of approach does work for some. But then we get back to trying to work out who and what it works for. There is also the question of whether improvements are sustained. If the success is there, these things should be seriously looked at (not with children first though please!).

From my own experience, Coxy, and if you will try to ignore my poor performance in one of my earlier posts, my advice at this stage is to be restrained. As you say, the improvement is exciting. Sure, ride the wave, but don't get carried away by the high. Build it up slowly, and hopefully you will have your life back, and have no further interest in this forum.

Sincerest best wishes
F
 

DavidJ.

Senior Member
Messages
111
Location
Germany
its great that you feel better. i hope that it sustains and you don't relapse like so many people that i have read about.
of course most of the participants feel better after the practitioners have hyped them up for three days , you are told that this is just a phase , that you will soon be cured and you are a wonderful person etc. but i doubt that endorphins can really wipe out viruses in the long run...
in fact there has been noone on any forum who had a reactivation of ebv or cmv for instance and after lp, the test came back negative.
 

Esther12

Senior Member
Messages
13,774
DAY 3 AS I WOKE UP!



Ah ha! So I'm not the only one who goes to bed as though dressed for an artic expedition!:D Thick nightdress neck to ankles and long sleeves, topped with a massive mohair cardigan, gigantic bedsocks, two duvets, and an electric fire beside my bed. Nothing much changes in the summer, except the mohair cardigan occasional gets disgarded if the temperature rises much over 80F.

I am more than intrigued by the rest of your post, Coxy. I look forwarded to reading your next episode.

Mad stuff.

I'm usually in six layers on, and am under three duvets at night. I was under two recently and the cold kept me up. I wonder how LP could alter this so rapidly?

It would be interesting to see if they could make previously healthy people suddenly feel the cold terribly through some alternative process.
 

fingers2022

Senior Member
Messages
427
Mad stuff.

I'm usually in six layers on, and am under three duvets at night. I was under two recently and the cold kept me up. I wonder how LP could alter this so rapidly?

It would be interesting to see if they could make previously healthy people suddenly feel the cold terribly through some alternative process.

Actually, can't stand the cold either......just burn up at night.
LP didn't fix either....nor the peripheral neuropathy, frequent infections, PEM, headaches, gut........lalalalalal Must stop doing these!!!!!!!!!!

Think my problem is that I've never been good at doing as I'm told.,,,or should that be doing doing as I'm told? Does a double doing make a not doing? Maybe that's the answer!!!!!?????
 

coxy

Senior Member
Messages
174
FINISHED THE LP DAY 3.

As promised as you are the most important people to let know of what the results are SO FAR....
I think these are the most helpful posts to us all in whatever we try, we need as much info and help we can get.

Firstly my trainer informed us today when i questioned as to why they were doing a trial on children before adults, that they are in fact trialing on adults aswell, sorry not sure where but some of you maybe able to enquire direct from phil parker.

As i said in my early morning post today. I felt very good this morning & noticed some obvious changes in my temperature, numbness and overall happiness (although i thought i was acting reasonably happy before).

We arrived and the trainer mentioned straight away that our colour was much better today, which it was. Although the colour drained from my sons cheeks quite quickly as she put on her day 3 slides to watch, so boring, but obviously necessary to the whole process. I was completely honest in everything i said, she didn't always like me questioning anything but i was determined to get my points answered. I told her i felt better but obviously it was early days and i needed to be doing the process for a lot longer before i could be sure

i will keep in touch and have a better idea after 2 weeks holiday in florida, we are going on sunday. I will still be taking the XMRV UK test aswell. At the moment though if you asked me if you should give it a go i would say yes.
 

Esther12

Senior Member
Messages
13,774
FINISHED THE LP DAY 3.

As promised as you are the most important people to let know of what the results are SO FAR....
I think these are the most helpful posts to us all in whatever we try, we need as much info and help we can get.

Firstly my trainer informed us today when i questioned as to why they were doing a trial on children before adults, that they are in fact trialing on adults aswell, sorry not sure where but some of you maybe able to enquire direct from phil parker.

As i said in my early morning post today. I felt very good this morning & noticed some obvious changes in my temperature, numbness and overall happiness (although i thought i was acting reasonably happy before).

We arrived and the trainer mentioned straight away that our colour was much better today, which it was. Although the colour drained from my sons cheeks quite quickly as she put on her day 3 slides to watch, so boring, but obviously necessary to the whole process. I was completely honest in everything i said, she didn't always like me questioning anything but i was determined to get my points answered. I told her i felt better but obviously it was early days and i needed to be doing the process for a lot longer before i could be sure

i will keep in touch and have a better idea after 2 weeks holiday in florida, we are going on sunday. I will still be taking the XMRV UK test aswell. At the moment though if you asked me if you should give it a go i would say yes.

Good luck with it all. Thanks for the day by day account.
 

DavidJ.

Senior Member
Messages
111
Location
Germany
by the way, there have also been cure stories from people who used e.f.t, but this is something you can get for free on youtube. the lp is 750 euro in germany, which is almost a thousand dollars! where do sick people get so much money from?
 
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