Hubby's new chiropractor tried a new testing method on him. It is called neurolink and utilizes kinesiology. It is hard to describe the exact testing involved.
Hubby did 2 of 30 different test modules. So far chiropractor has come to the same conclusion as at least 2 other chiropractic neurologists who used different testing methods over the last 5 years.
Results so far -- autonomic nervous system dysfunction -- caused by various viruses, parasites and fungi. Also, right and left brain do not communicate correctly -- problem specifically with the right temporal lobe.
Tried to correct brain communciation -- somewhat similar to other techniques from other practitioners. Kind of complicated and difficult to describe.
If I was a betting person I would say that this has already failed as has always happened in the past. Things started falling apart even before we left the docs office with bad tremors/myoclonus and hubby had a bad episode of muscle stiffness before he went to bed at 9:15. This is probably the worst he has been in 2 or 3 months.
Of course the trigger could have been the cold lasers which were used to try to correct the dizziness from a vestibular problem -- triggered by trying to correct the left brain/right brain issue. At least once or twice the cold laser therapy has been tried before with no beneficial results.
Today is hubby's 5 1/2 year anniversary of his illness and being disabled and out of work. He wasn't too happy to hear that all the previous issues are still present.
Here is the website. Would like to hear from anyone else who has tried neurolink.
Bea Seibert
Posted by LYMESCIENCE (Member # 9259) on :
Ok, so I'd never heard of it, so I went over the website.
Some of the stuff they are talking about is absoultly true.
The brain needs to be in charge of the entire body for complete health, but the opposite of that statement isn't also true. Meaning, that even if the brain is healthy, other parts of the body can still be sick.
Problems like the one your husband has will never have a one size fits all cure. However, I am of the firm belief that some kind of nuero link issue is certainly present in chronic lyme disease, but its a symptom, not a cause.
Rely on your intuition, become the scientist for your husband. If something has ever worked for you, ask yourself why? If whatever it was stopped working, again, you need to ask why? If you can answer these questions, you can plan a treatment approach with some level of certainty.
Most importantly, don't ever give up. You can get better if you keep trying, keep learning, and never stop questioning why?
Posted by seibertneurolyme (Member # 6416) on :
Lymescience, Thanks for the encouraging words.
Northstar, Thanks for the detailed email.
Maybe I spoke too soon last night. Actually hubby had the best day today he has had in 2 or 3 months. Anytime he can go from 6 mg of IV Ativan per day to 2 mg of IV Ativan something major is happening. Of course tomorrow will be the test.
Long ago his pattern used to be that when he had actual seizures the next day was actually a pretty good day. It was like the excess electrical energy would build over days or weeks and then once it was discharged he would get relief for awhile.
The last year or two the pattern has changed and he has mostly had milder seizure-like episodes which have been very consistent day to day -- almost like clockwork in their timing. Since the gastritis he has been averaging 5 - 6 mg of IV Ativan daily instead of 3 - 4 mg.
What we have been searching for for over 3 years now is something to calm his nervous system so he can get off the IV Ativan. Half a dozen seizure meds did not work. A couple of antibiotics have had the most effect.
After 3 years you can't help but wonder if there is some permanent damage to the nervous system, especially when docs start talking about seizures repatterning the brain and creating new neural pathways.
Of course the ironic part is that the myoclonus started with the first dose of a psychotropic med prescribed by a neurologist for a rare movement disorder (RKP) -- this was after he became symptomatic but before the Lyme had been diagnosed.
Will keep you posted on how the neurolink treatments go. Hubby's next appointment is next Monday -- going to chiro once per week to start.
Maybe the tide is turning. I totally agree there is no one treatment that will "cure" hubby. The problem has been that in 5 years the only problems he thought he had solved -- gastritis and G.I. parasites -- have now returned to the picture.
Initially since we did not have a diagnosis we tried unsucessfully to treat any imbalance that came to our attention -- G.I. issues (nausea never really went away), hormones and neurotransmitters.
Then we started treating the Lyme and coinfections and concentrated on that rather than other systemic issues.
Now maybe we have made enough progress with the infections to tackle some of the collateral damage. We haven't totally ignored issues such as adrenal fatigue and viruses, but have put less emphasis on them.
The problem has always been to figure out what issue needs to take priority. I do not think that all systemic imbalances will automatically self-correct with a long-term illness.
No, we aren't giving up -- just getting worn out with the struggle.
Bea Seibert
Posted by mtnwoman (Member # 8385) on :
I know a person almost dying from MCS as well as food and emf sensitivity who's life was positively changed with NeuroLink -- just a couple of sessions.
I am going to try a few rounds this winter. It makes sense to me -- re-wiring dysfunctional neruo-immunological patterns.
Posted by jenny76 (Member # 18205) on :
Would love to find someone in my area that does this! This sounds very promising for your hubby Bea!! Is there a list of doctors that someone might have??
Thank you :-)
Posted by jenny76 (Member # 18205) on :
Oops just looked at the site, none in my area.
:-(
Posted by seibertneurolyme (Member # 6416) on :
Gee it is discouraging to read this old post from 3 1/2 years ago.
The Neurolink treatments just didn't seem to be the answer. Hubby just could not tolerate all the kinesiology testing -- made his tremors and myoclonus so much worse.
And we are still battling the infections -- specifically the mystery bug found on his bloodslides by both F lab and Clongen.