posted
edited to inquire about LENS, further down the post, as well as any useful discussion on neurofeedback.
thanks, m
howdy folks,
i could use some help. my son's encephalopathy resultant of tbd's is severe, and he has recently been referred by LL neurologist to pursue neurofeedback.
this is in addition to a number of evaluations as well as cognitive remediation. basically, we need to put together and outpatient plan that requires finding skilled services that are accessible to us (in the northeast). his case has been very difficult to manage and i could use some help gathering info.
i will search and research, but could use any info and/or resources others have available regarding neurofeedback - any experience and available services.. also, particularly re: the ZENGAR software.
he will be getting an EEG for initial brain-mapping, and another SPECT done.
mo
[ 02-07-2009, 02:27 PM: Message edited by: Mo ]
Posts: 8337 | From the other shore | Registered: Jul 2002
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Is the EEG for the brain mapping a QEEG (Quantatative EEG -- sometimes also called a "Functional EEG" but that can still be different)? Usually a regular EEG is not what is used for brain mapping.
However, insurance usually does not pay for a QEEG and will for EEG - so the doctor may code EEG but actually do a QEEG.
Sorry, I don't know about the software you mentioned. My doctor used some geared for ADHD students - from a place based in Seattle area.
I did many neurofeedback sessions (over about 2 years) and found them very helpful to help control seizures. But I needed more than just that.
The book: Symphony in the Brain (Robbins) outlines this.
There is a wonderful researcher in Charlotte, NC who has made QEEG and neurofeedback her life's work with the CFS population.
I had one of her QEEG/brain mapping and was very impressed. I also had 2 other separate tests and they all were similar in outcomes, showing the same place of dysfunction and slow brain waves.
The neurofeedback, itself, is really quite enjoyable - although getting the cap on just right each time was annoying.
I'll check my computer for notes I may have filed away.
I had to stop the feedback sessions due to various reasons but also had to admit that the treatments did not seem to last more than a few days - I needed more.
I also was not getting good lyme treatment at the time and the doctor felt, without that, the neurofeedback was not be enough alone. The doctor had never worked with anyone like me (with neuro lyme) before but was willing to adapt from his student sessons. Still, it'd sure be great to have whoever does this to be really LL, so I'm glad you have a LL neurologist guiding you.
For you son --- combined with treatment for TBD/lyme infection and getting the inflammation down - this can be a fabulous tool.
However, if the brain is swollen or infected, it could be a waste of time and money - and a source of further frustration for your son. Neurofeedback will not treat lyme but might help the brain heal when the brain is ready for that to happen.
I also wonder if he might be interested in learning Tai Chi. It may not be "cool" for kids his age - but there may be a group around that could be made to be "cool" - depending upon the instructor. Tai Chi actually does much the same thing as neurofeedback does in the brain - you just can't see it on a screen.
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Sorry if my reply is too wordy.
I'll be glad to help if there is any way I can. Looking up research I can do but phone calls are very hard for me to do.
Having a few more specifics might help me to not bombard you with information. Just let me know by PM.
If I had your location, your son's age . . . do you need insurance to cover this . . . etc.
I need to rest now for a while but I'll come back after I study the link for ZENGAR - I found it through Google.
posted
The NF field is largely unregulated and while there are some good practitioners out there, there are also some real idiots. Most of the real studies done on NF were done on epilepsy and ADD/ADHD - not people who have Lyme. I'd be careful doing NF with an active CNS infection.
I went to the aformentioned practitioner in Charlotte NC and within a few sessions they made my cognitive functioning significantly worse. It has not wore off. Many NF practitioners will spend a lot of time dissing drugs and talking up how NF has "no side effects" and can cause "no harm". This is completely wrong. Anything that can potentially cause a positive change when done correctly, can cause a negative change when done incorrectly.
The problem is, the skillset of practitioners in the NF field varies widely, there doesn't seem to be many practice standards, and there isn't a lot of agreement on the correct tests to do to even decide what "the right treatment" should be. So how do you know if what they are recommending will help or harm you?
I'd proceed with caution.
Posts: 116 | From Ann Arbor, MI | Registered: Nov 2007
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posted
thank you for your input. i'd like to know more so we can make an informed decision.
son needs something concrete (a therapy) to do in addition to the meds (for many reasons). his cns infection is being addressed over time on his abx regimens, but still active (mycoplasma and bartonella suspected as primary).
the doc underscored the Zengar software in his case.
the only practitioner in my region i have found uses Cygnet.
i have allot more to learn as quick as i can, and my computer was down for a few days.
i appreciate the feedback here.
mo
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
Yeah I am aware of the Zengar software. It works differently than "traditional" NF protocols. It may well work fine in your case. I don't know of any research involving that software, and certainly not any on Lyme patients. I would specifically ask about this of your practitioner.
I am just saying be cautious before jumping into this. Since there are no studies, demand a thorough discussion of evidence for its safety, efficacy, and risks in people like your son - who is not just the avg ADD patient. What has this neurologists experience been with neurolyme patients and neurofeedback? How many people have they treated? What have the results been? Has anyone been harmed? Why are they picking this treatment over another (meds, just waiting to see if the ABX work, etc..)?
Also, I agree not to focus too much on the software, but the honesty and competency of the practitioner. They need to be able to know more than just a particular software program in case they need to change tactics.
I'd also consider other options. Has your son has a SPECT scan? Perhaps Amen clinic style meds might help him temprorarily while the ABX work? I know people don't like psych meds, but at least with meds, the side effects wear off if you stop taking it. If a NF practitioner makes a mistake, it doesn't neccesarily wear off...
Posts: 116 | From Ann Arbor, MI | Registered: Nov 2007
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asus, he's had a few SPECT scans over the course of his illness, will have another next week to see if results have changed on months of tbd treatment.
he has an eeg scheduled by the recommending neurologist as well, who is expert in lyme.
i appreciate all of this insight, particularly to understand that neurofeedback must be approached very cautiously.
i do not yet understand the differences between zengar and other software, and have at the same time learned of two acclaimed practitioners of the LENS neurofeedback technique - which very briefly is a very different low frequency technique in which the patient receives the therapy passively. it does not treat conditions, but works off the brain waves of each client and feeds back minute waves.
i have more to learn, but now am considering that technique as well.
mo
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
Well what in particular did the LL Neurologist say as to why he favors the Zengar software? Is there something about it that makes it safer/more effective on Lyme patients based on his experience? Has he had bad experience with other systems? Just curious here...
Posts: 116 | From Ann Arbor, MI | Registered: Nov 2007
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
he only stated that he found it to be most effective in his opinion, going so far as to place the specific name in his report recommendations.
we are seriously considering LENS, because it's in my area along with expert practitioners, so will be communicating with the neurologist shortly, and will ask more about zengar as well as LENS.
hey carol, thank you, i had forgotten with all that's going on, so thanks for putting up the links for me!
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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anyone else have info on neurofeedback, or the LENS technique? it looks promising.
mo
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Mo,
I hope you pop back on. I have a question for you regarding something else. I sent a PM but I don't think it got to you.
Did you once post that you saw a LL Neurotologist (Neuro-Otologist)?
I know you more recently mentioned a LL Neurologist, but I am looking for someone who posted about the LL Neuro + Ear doc.
If that was you, I'd appreciate your PMing me with a name for a 12-year old girl in N.J.
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