Anyone tried Limbic Retraining: Dynamic Neural Retraining System?

[sicklady23]

I found Dr. Nathan's differentiation between "toxicity" and "sensitivity" to be helpful in thinking about all of this: essentially he says toxicity is when the body's organs are not working because of an active infection/toxin and sensitivity is when the nervous system has become overreactive. As he explains it, these two things feed each other and frequently co-exist--and it can be difficult to tell if just one or both are going on. From this perspective it makes sense that these neural retraining methods would be effective for some people and not others, or be helpful but not curative for some.

I also found the book Childhood Disrupted, by Donna Jackson Nakazawa, informative regarding the link between the HPA axis and the immune system--they're so closely intertwined. The main idea of the book is that early childhood stressors (psychological and/or physical) can lead to chronic illness later in life because of physiological changes in the body. Basically, chronic stress response = chronic immune activation.@Dufresne I think this aligns with what your point about a dysfunctional stress response being a factor in developing ME/CFS...

I've just started something called somatic experiencing therapy, which seems to work along similar lines as Hopper et al but is more directly focused on the autonomic nervous system and less "psychological" in approach (by which I mean the focus is more on physiological responses and less on thoughts or repeating certain phrases). So far it seems helpful.

 

[kurt]

I found Dr. Nathan's differentiation between "toxicity" and "sensitivity" to be helpful in thinking about all of this: essentially he says toxicity is when the body's organs are not working because of an active infection/toxin and sensitivity is when the nervous system has become overreactive. As he explains it, these two things feed each other and frequently co-exist--and it can be difficult to tell if just one or both are going on. From this perspective it makes sense that these neural retraining methods would be effective for some people and not others, or be helpful but not curative for some.

I also found the book Childhood Disrupted, by Donna Jackson Nakazawa, informative regarding the link between the HPA axis and the immune system--they're so closely intertwined. The main idea of the book is that early childhood stressors (psychological and/or physical) can lead to chronic illness later in life because of physiological changes in the body. Basically, chronic stress response = chronic immune activation.@Dufresne I think this aligns with what your point about a dysfunctional stress response being a factor in developing ME/CFS...

I've just started something called somatic experiencing therapy, which seems to work along similar lines as Hopper et al but is more directly focused on the autonomic nervous system and less "psychological" in approach (by which I mean the focus is more on physiological responses and less on thoughts or repeating certain phrases). So far it seems helpful.

Are you working with a somatic experience therapist? Or just trying it on your own? It looks like an interesting approach.

 

[Hip]

However, some of our most esteemed researchers seem to be coming around to this idea that a stress response is playing a crucial role.

Chronic stress might conceivably play a role in initiating ME/CFS, and several studies have shown a higher incidence of major chronic stress in people in the year before their ME/CFS first appeared. Refs: 1 2 3 4

(Personally I suspect stress may do this because chronic stress is known to decrease the antiviral immune response, which may allow any ME/CFS-associated virus you were unfortunate enough to catch during the time of chronic stress to run riot in the body).

But although stress may be a precipitating factor, there does not appear to be any scientific evidence that shows stress reduction techniques can ameliorate ME/CFS, apart from various anecdotes.


These self-reported anecdotes of success on the Gupta and DNRS programs have to be taken with a pinch of salt, for two reasons:

Firstly because any program like Gupta's which trains people not to have negative thoughts, and trains people to stop observing their bodily symptoms and bodily pains, may not actually make these patients better in an objectively measurable sense, but may merely indoctrinate patients to ignore their afflictions so that they report they are better.

Or after the training, patients may think it is "uncool" to report negative things (having being taught negative thoughts are bad), so only report positive things about their health.

In any case, asking people how they feel is never a good objective measure. What we need is objective evidence that these systems work. Objective evidence would be for example when severe bedbound or moderate housebound ME/CFS patients are made well enough to return to work via the Gupta or DNRS programs.

Or if we take something like POTS, whose severity can be accurately and objectively measured by the increase in heart rate that patients manifest when standing from a relaxed lying down position, I'd like to see evidence that this increased heart rate on standing slowly reduces and disappears over the months, as patients follow the Gupta or DNRS programs. POTS is an eminently objectively measurable condition, so it would be a good one to use to demonstrate objective benefits from these programs.

We need objective measures used to assess the efficacy of these systems, not cherry-picked subjective reports presented as glowing testimonials.


Secondly, when you are treating a very large group of patients (and I expect the Gupta and DNRS programs must have been followed by many thousands), you would naturally expect a certain percentage of patients in the group to spontaneously improve or recover (especially if the group contains patients like Annie Hooper herself, who only had ME/CFS for a few years, and so may well have had post-viral fatigue rather than ME/CFS — post-viral fatigue eventually spontaneously clears itself up after a while).

Cherry-picking a few cases of improvement out of the many thousands of patients that have followed these programs and presenting these as testimonials does not prove much.

To perform a proper study, you need to examine a large group of patients taking these programs, and see how the improvements in patients in that group compare to a placebo-controlled group (in this case, the placebo could just be a set of arbitrary DVD-based exercises that were not designed to reduce stress, such as doing crossword puzzles say, or something similar). It's only if these programs produce better results than placebo that you can say they are effective.


Gupta, Annie Hopper, etc are convinced that their systems work, but have not yet performed a proper placebo-controlled blinded study in collaboration with a university.

Apparently for Annie Hopper's Dynamic Neural Retraining System (DNRS), they are crowd-sourcing money for a study to be performed in conjunction with the Canadian universities of Calgary and Alberta.

And Gupta is also crowd-sourcing for a study with "a well-known independent clinic and research center". They both seem to be asking their former patients for money.

I just hope that they choose good researchers and a rigorous methodology, otherwise if they follow some shoddy approach using some second-rate researchers, any results they get will be invalid (just as the shoddy PACE trial results were shown invalid), and they will have wasted all that money that their former patients donated.

I would not use psychologists/psychiatrists to run these trials, as the PACE trial fiasco shows that psychologists/psychiatrists are often not good at setting up rigorous research methodologies. I would instead choose researchers with a hard science background, like statisticians for example.


I keep an open mind regarding these techniques, but I would like to see rigorous science testing them, rather than just promoting them without having any scientific evidence, merely by testimonials and marketing strategies.

 

[sicklady23]

Are you working with a somatic experience therapist? Or just trying it on your own? It looks like an interesting approach.

I'm working with a somatic experiencing therapist. I'm not sure how effective this would be to do on one's own. My therapist does a lot of guiding and chooses what we do and for how long based on my physiological responses. I think making sure that you're not attempting to do more than your nervous system can handle in any given session is a big part of the process.

 

[GusLuna]

Wondering if anyone is reselling NDRS dvd's as I give it a try to the system?

 

[kurt]

Wondering if anyone is reselling NDRS dvd's as I give it a try to the system?

It comes up from time to time on eBay. As does the Gupta program.

 

[invisiblejungle]

Of course the DNRS team made a copyright claim of it. This tells me that they are not interested in truly healing people but rolling in the cash.

JUST TO SAY, I THINK THAT THE DNRS CAN BE EXTREMELY DANGEROUS TO PEOPLE WITH ME/CFS. Psychotherapy is nice but it will not cure you, don't get your hopes up and start doing too much. If you have ME according to the ICC criteria, this will not cure you. There is a place for programmes like this if you can keep pacing at the heart of everything. What I gained from watching this is to make my life happier with small choices and take a 1 hour break during the day to just be, because I have recovered to a point when I can do quite a lot and I might forget to just rest and heal. Mindfulness sometimes gets me too grounded and makes me sad about my situation, so I just think about happy stuff instead of being present in the now.

I did do the Optimum Health Clinic programme and it made a difference to me since my country is horrible for people with ME/CFS and I had only known I had ME/CFS for 2 months. With all the small things that everybody knows already what to do, I have recovered to a point when I'm back to working 12%.

Anyways if you want to know what the DNRS is, here is an explanation out the top of my head: Most of the DVDs are just basic bullshit and hyping people up to believe that the system works and then some scientific jargon how the limbic system this and that. The actual retraining is standing on specific words on the floor and talking to yourself (I don't remember these exactly anymore but basically this):
1. "STOP STOP STOP" (hands move from waist to the sides with each stop)
2. My brain is stuck in a rut, and is sending my body false messages" (hands on head, on chest, movement down and to the sides)
3. "My ME/CFS symptoms in the past have caused me anxiety, fear and avoidance behaviour" (hands on the right side PAST move to the left NOW)
4. "The symptoms have caused a cross-wiring in my brain, and I choose to retrain my brain" (hands on head, make a cross, thumbs point to yourself, hands on head)
5. Center of the circle "Great choice, YOURNAME, I love you so much and I'm proud of you!" talk to yourself in the previous position
Then something and then turning to position 3 and tell your limbic system "and limbic system, thank you for protecting me in the best way you knew how. But it's OK you can relax now, we have a new programme that we're running"
Steps 7 and 8 I believe were just dwelling in positive memories and future events where you are healthy, describing them in painstaking detail.

This needs to be done with a smile on your face because only a smile will make you happier and "will reroute your limbic system away from getting anxious about symptoms".

Annie Hopper thinks that ME/CFS is deconditioning due to avoidance behaviour and false beliefs of illness. If any of your doctors recommend this programme to you, ask them if they would recommend it to someone with diabetes or brain tumor as the number one thing.

I did notice I had some avoidance behaviour around food and some tiny things in my life and I decided not to go further along that road. This is not to say that you should just start doing stuff and eating what you like, but to pay attention to your behaviour if it is truly necessary or out of anxiety.

I've tried some far-out things (like radionics), but there is no way that I'm going to walk around on words on the floor and say, "Great choice, INVISIBLEJUNGLE, I love you so much and I'm proud of you!"

 

[Santino]

Can this program reverse food intolerances that imply anaphylaxis as it occurs in mast cell activation syndrome? Please only respond if you experienced that or know someone who could reverse these kind of reactions.

 

[Rlman]

Can this program reverse food intolerances that imply anaphylaxis as it occurs in mast cell activation syndrome? Please only respond if you experienced that or know someone who could reverse these kind of reactions.

I saw a youtube video of a lady who said NAET cured her anaphylaxis reactions to food. she was unable to eat any food due to those reactions until doing NAET, she said it saved her life. maybe DNRS can help such as well. there are a few blogs of ppl who used DNRS for food sensitivities, you can check if they had anaphylaxis.

 

[Santino]

I saw a youtube video of a lady who said NAET cured her anaphylaxis reactions to food. she was unable to eat any food due to those reactions until doing NAET, she said it saved her life. maybe DNRS can help such as well. there are a few blogs of ppl who used DNRS for food sensitivities, you can check if they had anaphylaxis.

NAET is pseudoscience and I would highly doubt any report unless coming from a person you personally know. I know several people who tried it. And the problem with DNRS is similar: I cannot find any report that is not fromt he company that is really convincing. Some report state that after two years their intolerances improved a little. I think that can also easily happen as a normal fluctuation of the disease...

 

[Wayne]

NAET is pseudoscience

I think that would be a fairly accurate description. However, I'm not sure whether NAET practitioners have ever claimed it was based on science; only that it worked according to certain principles, which seems to be quite a difference.

I have a friend who's an ND, and began using NAET in her practice. I traveled several hundred miles and was treated by her for several hours, over several days. I felt better as each day went by, and when I got back home, maintained that improvement for about a week before dissipating. From my experience, there's definitely something to it. I think the most benefit I got was it reduced my EMF sensitivities.

Regarding pseudoscience: I myself think it's fairly rampant in our conventional medical system. So I have a lot more concern with pseudoscience as it affects people who think the way they're being treated is based on science, when that's actually not the case. Way too often, the way they're treated is based on profit motive.

 

[Rlman]

NAET is pseudoscience and I would highly doubt any report unless coming from a person you personally know. I know several people who tried it. And the problem with DNRS is similar: I cannot find any report that is not fromt he company that is really convincing. Some report state that after two years their intolerances improved a little. I think that can also easily happen as a normal fluctuation of the disease...

did you see the resilientlyrachel blog i posted earlier in this thread?

i don't doubt that NAET testimonial on youtube, she did not recommend a specific practitioner so not getting any personal benefit from sharing her recovery

emotional freedom technique has interesting testimonials too

 

[Dufresne]

In Dr Nathan's new book, Toxic, he writes about the DNRS and its "enormous benefit" for his most sensitive patients. At the time of writing he had used it with 150 really sick people and "with just two exceptions, all of them made progress that ranged from good to amazing."

That's good enough for me; I start tomorrow.

I'm learning that Dr Nathan admits when he's been overly-enthusiastic about a test or treatment. He was once keen on VIP but has since come back and said it only produces modest benefit in about 10% of people. He's also come to the conclusion that testing for HLA DR serves no real purpose, despite ordering that expensive test for many of his patients. He really is trying to bring the best information forward, and he'll admit when he's been wrong. And yet he still very much believes in DNRS.

He's great and I highly recommend his book and videos. He covers everything from infections to toxins, from MCAS to vagus nerve theory, from detox to methylation, etc.

 

[Daymoon]

Neuroplasticity makes a lot of sense to me, and I did the Hopper program for six months with great success in elimating my noise sensitivity and reducing insomnia. However I had a major medical oversight that would not have happened if I hadn’t been attributing everything to a limbic loop, which is what they encourage (though they say “your intuitive self will tell you if something needs addressing medically “ or something pile that.) I am planning to resume soon; it’s not advisable to do when under a lot of external stress, which I’ve been under. The coaches have now softened their hardline approach to not doing anything medical, and not eg indulging emotions.

One pitfall is it sets up a kind of new psychological hypervigilance that feels like I’m at war with my mind. So I’m planning on mixing it with Somatic Experience and “gentle noticing”— or diverting—and making sure I stick with what works for me there and not just follow the extreme protocol.

 

[SueJohnPat]

I have been doing DNRS for 9 months. I had fibromyalgia/ CFs since 2009.
My symptoms have morphed over the years. First severe pain ( fibromyalgia) so bad I was on fentanyl for 2 years. Got off fentanyl using ( pridgen protocol) Celebrex and Valtrex.
After severe pain got better my brain felt extremely foggy / emotional outburst over nothing. Would forget how to do things dementia like at times. I lost 25 pounds for no reason.
2016 took a mold sabbatical— Felt the best I have since becoming ill.
As I got better I gained 30 pounds - no changes in diet. I think my system just went from fight or flight to rest and digest? I am a bit overweight now even with the hiking but not much.
2017-2018- moved left possessions behind able to hike and become more active but still hit with severe brain fog if “ exposed “. Sleep outside of new home in a travel trailer able to hike up to 6 miles.

Did not want to to extreme mold avoidance so started DNRS, First 2 weeks the terrible taste in my mouth disappeared ( after 2 years) and I was able to wear earrings that I had been “ allergic “ to for years, My ibs symptoms flared and then subsided while doing DNRS’. This is not a linear recovery .

One week severe dairy reaction . Tried again in 2 weeks able to drink milk - no reaction. My “ ibs” of over 30 years is 90 percent gone.

The major symptoms malaise/ loss of executive function are leaving me now after 9 months. Some of the toughest symptoms are the last to go for me .
I am still in pain most mornings still take 1-2 tramadol most days and clonazepam at night but not all the time like before.

I am applying for jobs and scheduling interviews and learned how to use the apps on my I phone. I am actually getting callbacks. I am on Ssdi and am in the ticket to work program . This has been a wonderful experience for me. I had numerous neuropsych test which showed that my brain and intelligence, reaction time etc are on track.
I am seeing a psychologist ( free of charge through Medicare) who is reassuring me. I have some traumatic stress from this illness.

My extended family offered no support just put me down all the time so I virtually had very little to do with them. I am very fortunate to have a loving husband and sons, and some long term friendships.

I did not religiously do the hour a day I just did the best I could. I would do 2 hours some days and 20 minutes others. Yes sometimes it felt really ridiculous going through the motions. I made the program my own incorporating long solo hikes while practicing DNRS in the forest. I started camping and spending large amounts of time outdoors. I am listening to my own body and just going with it. My theme is just do it ( not a marathon just what you safely can do DNRS wise and do not overthink it.)
I did not follow all the “ rules” except to make time to practice rounds and not watch any violent television ( except Game of Thrones) . I pay attention to my environmental “ diet” . What people am I around ? Are they Boosting my health? ? What helps my brain ? Not cleaning the kitchen but taking a solo ride to the beach and sitting looking at the ocean while practicing rounds. Not fretting about chores but meditating in the forest. Embracing and enjoying solitude. As I heal I am taking on household responsibilities but for about a year I did not— Thanks Jim for getting it.

After 2 years we are unpacking our belongings from the old house . I’m helping and I am having no major reactions.

I think DNRS and Gupta and Dan Neuffers Program’s require a good deal of commitment but I would recommend using them“ freestyle “. I wanted certain symptoms gone and they hung on and little symptoms disappeared but you just keep practicing and ride the wave.

This is my experience. Science needs to sort this out. For all I know this is a placebo but it is working for me.

There is a lot on u tube and if you research you could put together your own program. I think the 300 dollars was a fair price.

 

[poohsilk]

Thanks for posting Sue!
I am also doing DNRS for the same reasons you write about. Before that while in mold I did Gupta. Finally moved out of the second moldy dwelling. I think this current one in a drier climate (CA) is safe but I am so sensitive to everything- foods, electricity, etc that short of sleeping outside I have to calm my system down rather than avoid completely. I have had incredible periods when I thought I was healed for several days. I know it's a roller coaster. I have faith that this will heal me although I have multiple medical problems. The people who talk about their recovery keep me going. I highly recommend it to all moldies and even to those who are just sensitive and having mystery illnesses.

 

[BravoIn]

@sflorence Were you able to find a DNRS torrent? Thank you very much.

 

[Tella]

Thanks for posting Sue!
I am also doing DNRS for the same reasons you write about. Before that while in mold I did Gupta. Finally moved out of the second moldy dwelling. I think this current one in a drier climate (CA) is safe but I am so sensitive to everything- foods, electricity, etc that short of sleeping outside I have to calm my system down rather than avoid completely. I have had incredible periods when I thought I was healed for several days. I know it's a roller coaster. I have faith that this will heal me although I have multiple medical problems. The people who talk about their recovery keep me going. I highly recommend it to all moldies and even to those who are just sensitive and having mystery illnesses.

Hey how are u now

 

[Tella]

Neuroplasticity makes a lot of sense to me, and I did the Hopper program for six months with great success in elimating my noise sensitivity and reducing insomnia. However I had a major medical oversight that would not have happened if I hadn’t been attributing everything to a limbic loop, which is what they encourage (though they say “your intuitive self will tell you if something needs addressing medically “ or something pile that.) I am planning to resume soon; it’s not advisable to do when under a lot of external stress, which I’ve been under. The coaches have now softened their hardline approach to not doing anything medical, and not eg indulging emotions.

One pitfall is it sets up a kind of new psychological hypervigilance that feels like I’m at war with my mind. So I’m planning on mixing it with Somatic Experience and “gentle noticing”— or diverting—and making sure I stick with what works for me there and not just follow the extreme protocol.

Hey how r u now

 

[Tella]

In Dr Nathan's new book, Toxic, he writes about the DNRS and its "enormous benefit" for his most sensitive patients. At the time of writing he had used it with 150 really sick people and "with just two exceptions, all of them made progress that ranged from good to amazing."

That's good enough for me; I start tomorrow.

I'm learning that Dr Nathan admits when he's been overly-enthusiastic about a test or treatment. He was once keen on VIP but has since come back and said it only produces modest benefit in about 10% of people. He's also come to the conclusion that testing for HLA DR serves no real purpose, despite ordering that expensive test for many of his patients. He really is trying to bring the best information forward, and he'll admit when he's been wrong. And yet he still very much believes in DNRS.

He's great and I highly recommend his book and videos. He covers everything from infections to toxins, from MCAS to vagus nerve theory, from detox to methylation, etc.

Hey how r u now