Dvd Rehabilitation For Pots, Cfs & More

[Evergreen]

I read this story about a POTS sufferer who recovered by going to a seminar and trying this program called Dynamic Neural Retraining Systems

http://wheelchairtorollerblades.com/2014/02/02/my-recovery-from-chronic-illness/

Just wondering has anyone tried this? The in-person seminar is thousands of dollars but the DVDs are only $200-300. I was thinking it could be worth a try.

[Sylvie33]

Dear Evergreen,

I went to the site for the heck of it.

My suggestion is to forget you ever saw this. Snake oil, quackery...feeding on the very real uncertainties of having very difficult to diagnose and treat disorders.

The ONLY information on this site are testimonials, and interesting that those experiencing miraculous cures happen to have 10 or so confounding conditions simultaneously! (Let's rope in everyone we can with a single uplifting story!) No mention at all about what is on those tapes, let alone any allusion to real research.

Promises of singing, dancing, and pregnancy! A 30 lb. Weight gain with bison broth (loved that line explaining why the lucky Ms. Dinkle looked so fetching in her wheelchair).

Granted I am extremely frustrated by the pace of diagnosis

and relative lack of treatment ... nature of the beast(s) we unfortunately face.

I know how much you want to be well, but I'm also angry at outfits seeking easy profits from this wish.

Best of luck with your tests, and take heart that many young people like you do recover....

S

.

[MomtoGiuliana]

I will add that the thing about POTS is that many patients DO eventually recover (according to studies, what I have seen on this forum and what my specialist has told me). IMO this makes our condition vulnerable to these kinds of claims.

In my case, I was very sick and disabled by POTS for about 10 months 13 yrs ago. Over the course of several years I recovered greatly. If I had tried a treatment like this I might have been tempted to say that is what brought about my recovery as well. I am not sure I can say what brought about my recovery, other than time. (I do still experience some symptoms, BTW, but I am quite functional 90% of the time!).

When we feel very poorly we are very vulnerable, quite frankly, especially if we go to dr after dr with no support or answers. This happened to me as well. I went to a naturopath in desperation and she was initially the only person who seemed to believe my symptoms. Unfortunately she was also unable to diagnose me, but did prescribe some very expensive treatments, some of which I tried, and none of which was of any help. (This is not to say that naturopathic treatment is completely quacky, there may be treatments that are helpful and I know there are increasingly studies supporting some of this).

Here is DINET's statement regarding evidence-based care which may be helpful to consider:

http://forums.dinet.org/index.php?/topic/27149-dinets-position-on-medical-practices/

[Sylvie33]

Dear MTG,

Well said --didn't know about DINET's statement.

-

[ks42]

Someone else recently found the wheelchairtorollerblades blog (it's not actually a blog, just an advertisement), and I wrote a pretty detailed response to them in this thread: http://forums.dinet.org/index.php?/topic/27200-dynamic-neural-retraining-system/

I won't repeat my whole response here, but to sum it up, this program uses principles of neuroplasticity, which has actually been proven to work by retraining the brain to go into "healing mode" as opposed to the emergency/stress/fight or flight mode that the body gets stuck in during chronic illness. If healing from a particular disease is possible, using principles of neuroplasticity is thought to speed that healing process (I have a family member who is doing research in this area right now).

That said, I believe neuroplasticity, while probably not a cure in and of itself, may be a valid treatment to help push healing along. I just don't trust this particular program, because it seems to make too many outrageous claims, and its method of advertising seems suspect. Neuroplasticity can also be used in various therapies that are either covered by insurance or are much less costly.

[Sylvie33]

Hi,

Caveat: I am not a scientist and I am a dysautonomia newbie, but my endless bedtime is used researching this stuff...

_____________

"Neuroplasticity" refers to any changes occurring in the brain from the level of neurons to entire areas (say with injury). Wikipedia explains it well. It is a process....not a "treatment," which occurs continuously.

Behavior can affect brain neuroplasticity: this is why, for instance, cognitive behavior therapy has proven helpful for targeted behavioral disorders. Meditation also can change brain processes for the better. The proponents of this product are apparently using this idea.

That being said, dysautonomia is an extremely complex illness involving neurons and neural pathways, areas of the brain and specific brain structures, vital organs, hormones, and various cells and cell structures in our brains and throughout our bodies.... (why most of here have head-to-toe symptoms). Secondary dysautonomia is even more complicated, for immunological and other systems are involved.

Right now there really is no good research on why dysautonomia occurs. This lack of knowledge about root causes is why "treatments" only address symptom-reduction, and if someone is "cured," no one really knows why. (An exception is the use of certain infusions, like IVIG, to mitigate certain autoimmune disorders, which may,in turn, alleviate some dysautonomic symptoms).

Although neuroplasticity is essential for healing, this product is touted as on that "retrains" neurons. Well, which ones and how? Hmmmm.

Perhaps it makes users feel better, as does (good) therapy and meditation. Meditation is free!

Bottom line, unfortunately, no easy answers or cures.

Sylvie