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A Little Poisoning Along the Road to ME/CFS
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The Neural Reprogramming Game

Discussion in 'Alternative Therapies' started by Cort, Jul 17, 2009.

  1. Cort

    Cort Phoenix Rising Founder

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    I posted this in my blog but wanted to throw it into the general circulation as well ;)

    I've use this little technique more often and more successfully than any other. It's not as powerful as the Amygdala Retraining technique but it's easier and for me it's more consistent.

    The neuro- reprogramming technique came to me while I was reading a book by Norman Doidge called "The Brain That Changes Itself". It describes the sometimes amazing effects mind training techniques can have on stroke and other patients. People who have injuries to one part of brain - such as stroke patients - can train other parts of the brain to take over those functions. It turns out that the brain is very malleable; virtually any part of it can take over an entirely new function if it needs to.

    So my question was if one part of the brain in CFS is damaged can you actually train another part of the brain to take over the damaged areas functioning? An alternate question is if one part of the brain is overactive - which is what I believe is happening to me - could I turn its activity down and correspondingly turn the activity of another (better) part of the brain up.

    What also struck me were passages describing scientific studies which indicate that changing your "behavior" causes changes in your brain. For instance anytime you take up a new skill the areas in your brain devoted to that new skill will start to grow. If you took up pottery, say, the neurons in your brain devoted to touch would grow tremendously.

    I've long like I was kind of stuck in this anxious, unable to calm down, over activated mode. I wondered if I could neurally 'grow myself' out of ME/CFS by consciously activating other parts of my brain and establishing new neural connections just as the stroke patients did? The key to do that is obviously activating other parts of the brain.

    How to do that? (A) First by recognizing those patterns - those same old body sensations and patterns of thought and then invoking the possibility of 'neural reprogramming'. (I actually say to myself 'neural reprogramming'). It simply involves settling down and doing something different - putting one's attention elsewhere hopefully building a connection to a different part of the brain.

    For instance, by brushing the back of your hand across a table - you light a different part of your brain. If you do that enough you establish a strong connection to that part of your brain. The idea is simply to light up different parts of the brain than are currently being light up by paying attention to new and different parts of the environment.

    I started out simply paying attention to things I usually don't pay attention to like the fine sense of touch, the sounds around me and and objects I'd ordinarily never look at. That would usually instantly leave me more relaxed - allowing me to step outside of ME/CFS (to some extent) briefly.

    I've done it enough that now when I invoke the idea of neural reprogramming its associated with a new mode of being; my breathing and heart rate slow down, my body straightens up and my energy increases: I step outside of ME/CFS a bit simply by invoking the process. I can sense when my body is beginning to get caught in those old patterns and often find a way to slide at least somewhat out of them.

    These are like alot of little wins -temporary and usually small wins that I can't but think can be very helpful over time. Every time I feel a bit healthier I win!

    This technique is just one of several mindfulness techniques I use daily
     
  2. Angel

    Angel

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    over wired

    Hi Cort:
    I'm very curious about your description of how you feel - trying to bring yourself down. I am wondering if a lot of it is just that your central nervous system is over wired.
    Last winter I had a very difficult month with this problem. My skin was crawling, my stomach was squirrely, and I couldn't sleep from my legs. It felt as if a colony of ants were hiking through my veins.
    The Doctor gave me some Serrapeptase IV's which helped. He also used ultraviolet light treatments which helped immediately, but only lasted one day initially. After about 14 treatments, they lasted a week. My guess was that something in my blood stream was irritating my central nervous system and when it had been eliminated, the problem stopped.
    He also prescribed Alpha Lipoic Acid to calm things down.
    It took a good month or two to get things back to normal.
    Recently the stomach quesyness and other over sensitivity symptoms began again. After a week of struggling with it, I went to a natural type Doctor. He believed that it was a symptom of adrenal fatigue. Interestingly enough, the night before the problem started, I had a bag of cheetos, that the next day I discovered had MSG in them. He said it would take 1 week for the MSG to get out of my system, but until then the glutamate and GABA were not balanced in my brain. Don't quote me on this - - just trying to remember.
    The other thing that happened that night was an almost car accident. Sitting at a stop light in the rain, I heard the squealing of tires and in the rear view mirror saw a car coming right at me. I quickly accelerated and I was able drive forward 6 feet, and was not hit. However, I think I used up all of my adreneline. The symptoms started the next day.
    I find all of your info interesting, but I am wondering if it's a combination of something physical within your body causing you to feel too much.
    Also, LDN, or low dose Naltrexone 4.5 mg really helped to stop the crawling nerves in my muscles and skin. I am not on any painmedication, but on the LDN 4.5mg, my pain level is lower than it has been in the last 19 years. It might be worth researching ifyou haven't yet.
    Regardless of that, this is still one symptom that I don't feel I have eliminated 100%, and perhaps retraining the brain is part of it.
     
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Angel,

    Don't mean to thread-hijack, but have you posted anywhere else on your experience with low dose Naltrexone? I looked, but if there, I missed it. I would welcome hearing more as it is one of those promising treatments that is still under evaluation.

    And Cort, your thoughts about informal neural reprogramming are fascinating. I see that you are working with Ashok Gupta's Amygdala retraining, as am I, but I also like the idea of devising a personalized form of neural reprogramming according to what you are experiencing in your own body and mind. When you mentioned that some things, like pottery, light up "touch" areas in the brain, it also comes to mind that many of us are "touch deprived" due to the limitations of our daily lives and social interactions. Let's see...bet not many of us are getting our hands in the soil or doing too much tactile other than tapping computer keys! And human tough is another iffy area for many.

    This is an interesting angle--looking for brain areas that are over or under stimulated.

    Thanks,
    Sushi
     
  4. Cort

    Cort Phoenix Rising Founder

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    Hi Sushi, I absolutely think we are 'touch deprived'. I think we've lost the fine sense of touch and balance and coordination that we had. Bringing it back can be helpful - I can attest to that - even tho I've only done it intermittently.

    What about the fine sense of coordination and balance - of grace? I wonder if that can be brought back. Could I integrate those things back into my neural 'programming' by learning how to use my muscles in a graceful manner again? I don't know I am trying to do that - sometimes it does work.
     
  5. Cort

    Cort Phoenix Rising Founder

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    My over wired system

    Indeed - my nervous system feels over wired - I'm sure that's true. But what's causing it. I thought it was interesting that Dr. Logan reported that gut disturbances from too much D-lactate makes laboratory animals anxious.

    Ashok Gupta thinks the fear 'button' get pushed in in ME/CFS and never pops out again as it should - we're stuck in our over stimulated and over-vigilant state.

    I'm sure many things can cause this. I would love to try anti-anxiety drugs and see what happened. I'm not sure I'd want to stay on them but I'd love to give them a try.
     
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I've had a very long history of the sympathetic nervous system being "over-wired." Some genetics there I know--I can see this coming down through my family. Never had much success dealing with it except -- gasp!--medication. My cortisol diurnal curves were usually inverse, etc.

    Something has made a difference in the last 18 months and the only thing I can think of is Rich Van Konynenburg's simplified methylation protocol. I actually came back with a normal diurnal cortisol curve after nearly a year on the protocol. Now I just don't feel that "I am about to fray" sensation. Who knows? But I am thankful. Other things are definitely in the "need a lot of improvement" category, but for quite a few months now that on-the-edge-of-coming-apart sense has been gone.

    I don't think this has been the universal experience of those on this protocol, but it has been for some.

    Sushi
     
  7. Cort

    Cort Phoenix Rising Founder

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    Thats great to hear. I talked to Rich about the protocol (and hope to do an interview with him fairly soon) and he said it often took quite awhile to take effect. No miracle cure - that's too much to expect from such a simple protocol - but every little bit helps.

    I'm extending the neural reprogramming game to what's happening in my body; actually it always involved that - but I'm focusing more on my body - in particular my breathing. I'm just kind of noticing the state of things in my body and asking it if its alright for it to take a deep breath. I'm asking it why not just be relaxed. Why not just breath into my abdomen - why not a healthy type of breathing pattern?
     
  8. Angel

    Angel

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    over wired/low dose Naltrexone

    hi Sushi:

    I do have more information on low dose Naltrexone and I should post on it soon. Feel free to remind me in a few days. :) My Doctor put me on it this winter. I had to go off of all pain medication before I went on it. The reason he suggested it was because of my nerves going nuts all over my body and feeling raw.

    He said the LDN is supposed to heal the nerve endings and grow myelin sheaths. It also has a great immune booster and helps to keep you from getting sick from other things.

    It partially blocks the neurotransmitter to the brain that deals with pain. When you brain believes it is not getting enough of it's own natural opiods it makes more.

    I do feel as if it worked better each additional month that I was on it. It is a compounded medication that I get from a compounding pharmacy in Florida.

    I do think that all of these symptoms are connected, and that the cause may be from more than one area. Because of the imbalance in different areas we feel as if we are on the edge of the cliff.

    Cort, I've tried the antidepressents and found they really messed up my brain and body. they caused leg cramps and weakness, and felt as if there was a spring going doiiiinnngggg in my brain when I moved my head from side to side. They really did not help my depression at the time, but I did gain 45 pounds in 3 months from one of them.

    Then when you figure out that they have so many side affects you have to go off of them. Weaning off of them took longer than the amount of time I took a normal dose. Not worth the experience.

    What worked for me is a prescription of 250 mg L-Tryptophan every evening which I got from the same Doctor and the same pharmacy. That got my depression under control extremely fast.

    When a domestic crisis would occurr, instead of feeling like a puddle on the floor and unable to cope, I would just think, oh shoot, and then deal with the problem. It allowed me to cope with whatever had happened instead of feeling hopeless.

    For some reason 5-HTP has never helped me with depression and only gave me headaches.
     
  9. Angel

    Angel

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    over-wired/dual symptoms

    I'm splitting this answer up since it got to be too long.

    I feel as if the brain problems and the adrenal weakness are combining to make the squirrely problem in my body.

    I have been reading "Adrenal Fatigue" by James L Wilson, N.D., D.C., Ph.D.
    Many experiences that may lead to adrenal fatigue also lead to chronic fatigue.

    Many of the symptoms of adrenal fatigue feel like the symptoms of chronic fatigue.

    Perhaps toxins, injuries, accidents, viruses, etc affect both the adrenals and the brain. Maybe we would heal faster if we dealt with both of them instead of just one of them.

    It is rather like the onion. You peel off or deal with one layer, and there is another waiting. There are several layers to get to the core.

    Dealing with either one of them would support the healing of the other, but both would need to be healed.

    When I get to the stage of feeling overwired, I know that I have over done it physically, and I need to deal with several different issues.

    Touch, is extremely important. Maybe that is why massage works so well for me. That said, a Swedish light massage will drive me absolutely bonkers with anxiety. I need a deep neuromuscular massage. Other than that, I recommend a lot of sponge hugs. Just soak it up.
     
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Angel,

    Thanks. Repairing myelin sheaths sounds great. Tell us more about LDN! The only negative I have heard is that it can mess with your hormones.

    And interesting about L-Tryptophan. I too get migraines from 5-HTP. (is that the type of headache you got?) I assumed they were caused by the shift in serotonin, but the fact that you can take tryptophan is encouraging. I have some sitting here but have been afraid to try it because of the possibility of migraines. Any thoughts as to the different response to tryptophan and 5-HTP?

    Sushi
     
  11. Cort

    Cort Phoenix Rising Founder

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    I'm looking forward to that thread on Low-Dose Naltrexone. A person I interacted with on a Yahoo group used it - you can find a bit of his experiences here http://aboutmecfs.org/Story/JasonGoodbye.aspx. He was taking so many things that it was hard to tell what was what but LDN was one of his favorites. Unfortunately he appears to have had a seizure and died - not from the LDN, though.

    If you could please start a new thread on it - probably in the General Treatment Section - that would allow us to focus on it.

    Several studies have suggested amped up Fight or Flight response and underactive Rest and Digest response in ME/CFS. The ANS controls those and it is responsible for our breathing, heart rate, blood flows, regulating immune functioning etc. One study indicated that if ME/CFS patients picture a negative event they have a much higher physiological response than healthy people; this suggests to me that we are in or close to be in a 'stress response' much of the time.

    It is reportedly possible by using mindfulness techniques, biofeedback, etc. retrain the autonomic nervous system to have us, for instance, breath more slowly and deeper - so as to not enter into the stress response. I wish I was better at doing it but I think it is possible. Once we get into that place of relaxation I wonder how much healing can take place. :)
     
  12. susan

    susan Senior Member

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    We are all looking to CFS research but the cure may come from research into another illness like PTSD. Last night I read on a site that PTSD has nearly identical symptoms to CFS all stemming from the Amygdala...HPA axis with low cortisol......hyper sensitivity arousal except that we dont have the serious flashbacks to deal with. I guess this is why Ashok is now talking with Gulf WAr vets. I feel hopeful for the first time in 21 years that something is going to develop further in this area and we may be cured...
     
  13. Cort

    Cort Phoenix Rising Founder

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    Some researchers think ME/CFS is like PTSD but it's internal; instead of over-reacting to outside events such as doors slamming ME/CFS patients are over-reacting to internal physiological events. Their brain's are interpreting normal events as dangerous and thus raising the fear response as you mentioned.

    It's interesting that that is in a way Dr. Light's thesis and he has some evidence for it; i.e. his findings that the sensory receptors for muscle damage on our white blood cells are over-reacting to normal amounts of lactic acid, ATP, etc. Ih his view its not the brain though but sensory receptors in our body.
     
  14. R**

    R** Senior Member

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    That makes sense. Fits the idea of dysregulation where the body is over reacting to things that are good for us, our own body chemicals, good foods, and underreacting to pathogens?
     
  15. R**

    R** Senior Member

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    I am beginning to think so too. And wondering what triggers the expression of of the genes or if they are always "on" and over time they become overloaded with work.

    Genie in Your Genes is big on stress and trauma triggering gene expression. Methylation is in there somewhere and I am not sure he is talking methylation cycle or not but he has a diagram where stress, trauma triggeres (psychological, toxin, pathogen, lack of nurturing he refers to or not.. dont know about you all, but constant family stress for me).. anyway, the cycle feeds on itself. The messed up methylation impacts the stress, trauma which loops back around.

    I am giving methylation supps a go first following the rules and getting methyl donors out as much as possible and ammonia, sulfur down, glutamine as well. Calm the system down. Then the cycle repair. Low dose herbs. Work on lymphs which I can tell are very sluggish. Ordered guptas program.. its on sell. EFt, breathwork.. whatever... hope to bring in homeopathy and energetics probably from a zyto practioner. Staying with NMT therapy because it has been effective to at least some degree. Would like to start addressing phobias and old traumas that have been resurfacing. Its like the body has little tolerance for any of this anymore. I think it is probably better to bring the body down as much as possible first, but I dont know how far I can go with that without addressing phobias and traumas.. ??

    Clonapin does help in a pinch. It is like the SNS is in extreme overdrive as if my body is allergic to itself.. or in panic of itself and the world.

    Robin

     
  16. rosebud

    rosebud

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    amygdala retraining

    Cort,

    I have read your accounts of using the "brain retraining" and would like to let you know about the heart math institute that has done a lot of research on calming down the nervous system by focusing on breathing into the heart( as the heart has its own brain, nervous system, and sends us emotional and intuitive signals). Core heart feelings reduce the activity of the sympathetic nervous system( the part that speeds heart rate, stimulates release of stress hormones, etc. They have found through much good research that when we focus on breathing through the heart and at the same time go to feelings of compassion, gratitude, love and appreciation - the parasympathetic nervous system takes over and makes us feel calm, balances our endocrine system and improves the immune system.

    In other words, it takes us out of our fear mode and into a safe place. It reduces hypervigilance. Very interesting stuff. I think it dovetails into the AR program and might be something for you to check out.

    You can check out their website at www.heartmath.org

    It might help reduce the wired feeling you have

    Rosebud:)
     
  17. caledonia

    caledonia

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    Sushi - 5htp and Tryptophan

    My naturopath says to try 5htp first and if you can't tolerate that, then try tryptophan. Intolerance would be things like headache and GI issues.

    They both help the body produce serotonin.
     
  18. Jody

    Jody Senior Member

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    Rosebud,

    I went to the website but am not able to read and decipher too well right now. Could you talk more about this breathing through the heart thing?

    The rest of what you wrote , going to those particular positive feelings and the camling effect, the healing chemicals released, coming out of hypervigilance into soundness ... that all resonates with me.

    Tell me more about breathing through the heart ... ? Is this meant in a physiological or a metaphorical way?
     
  19. rosebud

    rosebud

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    breathing through the heart/amygdala retraining

    Jody:

    Did you go to the section in the heart math website on the science of the heart? One of the things it mentions is that the heart has a direct link to the amygdala as well as other organs and produces its own hormones which affect all systems-- after all, the heart starts beating in the womb before the brain is developed. In reading the AR training program and realizing how Gupta uses the rational of calming down the fear - as if the amygdala thinks everything is bad for us due to a major stressor, which could be physical, emotional, toxin, virus, bacteria, etc.

    I thought that utilizing the heart math's coherence technique would help and be another tool- like a supplement would. Heart coherence is when your heart rhythm is in simple terms balanced and when it is out of coherence it is unbalanced and causes stress. They can measure this and have equipment you can purchase to do this- on your computer or a hand-held one called an m-wave, although you don't need this to perform the technique.

    They have found that the feelings we generate are more powerful than the mind and work faster than our thoughts. The heart is, after all, our feeling center - where we say we feel love, hate, compassion, - "my heart is broken" "my heart is filled with love"

    The how to's in simple terms:

    1. Find a quiet place, close your eyes and try to relax
    2. Shift your attention away from the mind or head and focus your attention in the heart area. Pretend you are breathing slowly through the heart for 10 or fifteen seconds( it takes me longer to get there)Putting your hand on your heart may help
    3. Remember the FEELING of love, compassion, appreciation or gratitude for someone or something that is easy for you to feel. Try to stay with that feeling for 10-15 minutes. Send that feeling of love or care to yourself or others.
    4. As head thoughts come in bring focus back to the heart. Try not to force it.


    As you practice, you can try shorter sessions throughout the day

    The feelings you feel in the heart will be sent throughout your body, calming and balancing, healing your whole body - and calming down your nervous system and amygdala.

    The great thing about this is that it is free, non-toxic and they have research that shows it works by well known scientists.

    They have a global coherence initiative (website) where their goal is to have people click in and help change the world's negative energy by using this technique. the more people who do this at the same time increases its power - they have proof of that too

    Maybe we could all have a heart lock in time for all cfids patients

    Rosebud
     
  20. Jody

    Jody Senior Member

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    Rosebud,

    This sounds like something I will be looking further into.

    Thanks. :)
     

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