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» LymeNet Flash » Questions and Discussion » General Support » post concussion syndrome / lyme

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Author Topic: post concussion syndrome / lyme
LisaK
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So I had a big head hit in the beginning of July. then I hit my head again the same week twice again. I didn't remmebr hititng my head the first time. I had concussion amnesia and then my vestibular system was so off that I hit head the second and third time on tree limb while diong yard work.

I almost went unconcsious and have been in PT and OT since then 4X a week and starting vision therapy this month.

I was JUST at a place in my TBD health to finally feel good enough to do more inmy life and then boom I hit my head!!


I do have a RX card for marijuana but never went to the pharmacy per my cannibis dr's recommendations.

my memory is really suffering.

Anyone else here with similar ??
lyme/TBD and then concussion? and what do you know any good tricks or things to do to promote wellness and healing from the concussion??

I realize new science saying that its impossible to heal from concussion unless you get rid of mold or bart or somehting. I forget already! haha.


any advice or help is v much welcome.
p.s.( I feel like I am starting al lnew in my lyme journey again! )

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Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

Posts: 3558 | From Eastern USA | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
Lymetoo
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So sorry to hear! I was wondering where you were!

You might also try asking on the MCAS board.

I don't have any tips or suggestions, since I have never had a concussion.

I'm so sorry this has set you back, but good for you that you are going to PT!!

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--Lymetutu--
Opinions, not medical advice!

Posts: 96222 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
LisaK
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awww thanks lymetoo!

I can't remember any posts I have posted here at all!

I almost forgot all about lymenet!

I shudder at the thought.
I will check the MCAS board, TY

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Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

Posts: 3558 | From Eastern USA | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
LisaK
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Lymetoo, where is the MCAS board???

[Smile]

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

Posts: 3558 | From Eastern USA | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
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3 separate head injuries within 1 month is a lot!
Another battle to fight through, so sorry.

There is new research in post concussion syndromes.
I think the gold standard is a SPECT scan for actual diagnosis in what is truly happening in your brain.
Most not covered by insurance.

Amen Clinic link has great info for Neuro brain impairments;
https://www.amenclinics.com/conditions/concussions-and-traumatic-brain-injury/

Most Neuro’s say light exercise, ie stationary bike, slowly will get you better, along with balance exercises. If only it were that easy.

I haven’t had Lyme then concussion.
I’ve had 3 concussions then Lyme.

I had 75% of my Neuro Lyme symptoms disappear after antibiotic treatment and I returned to work. I was able to multitask and pay attention to the smallest details. I remembered most of my drink recipes except the more recent new ones but was able to re-learn them.

Remembering people’s names is sporadic as is recalling past memorable moments. But glimmers appear. This is from my concussions not Lyme.

Paying attention is key, not just going through the motions.
Being constantly 100% aware is most difficult.

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Lymetoo
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This is the MCAS group I like:

https://www.facebook.com/groups/486532874778463

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96222 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
LisaK
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Lymetoo, im on that one, thanks!

Bonnie:
I am looking at that amen clinic. I think I emailed them the other day. no one called yet to answer my questions, but it sounds v good.

Do you know if Amen takes any insurance? and how much it costs??

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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Bartenderbonnie
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Umm, no insurance coverage and very expensive.

https://www.thepricer.org/amen-clinics-cost/

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LisaK
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oh , isn't that always the case !

im so tired of this dance

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Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

Posts: 3558 | From Eastern USA | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
LisaK
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oh , isn't that always the case !

im so tired of this dance

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

Posts: 3558 | From Eastern USA | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
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Distinct brain differences in those with chronic Lyme disease;

https://www.lymedisease.org/hopkins-brain-differences-lyme/

“Objective biologic measures of post-treatment Lyme symptoms typically can’t be identified using regular MRIs, CT scans, or blood tests,” says researcher John Aucott, M.D., director of the Johns Hopkins Lyme Disease Clinical Research Center and associate professor of medicine at the Johns Hopkins University School of Medicine. “We needed to expand our methods of evaluation,” he adds.

The imaging tests revealed unusual activity in the frontal lobe, an area of the brain responsible for cognitive tasks such as memory recall and concentration. Participants were asked to memorize and recall capital and lowercase letters, as well as the alphabetical order of multiple letters.

Notably, the researchers say, the images in Post Lyme treated patients showed differences in their frontal lobe activity between the two groups in the white matter of the brain, which normally does not show up in fMRI scans, as this tissue operates with less blood flow than gray matter.

White matter is crucial for moving information around the brain, acting like train tracks that help deliver information to the train depot, or gray matter.


I think all Lyme patients deserve the opportunity to receive an insurance covered spect scan if they choose. It could become the gold standard for a Chronic Lyme diagnosis.

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LisaK
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thanks bonnie.
I agree about the spec scan!!

I cannot get any dr to order me one for years.

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

Posts: 3558 | From Eastern USA | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
LisaK
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I forget why I orginally plsted this (and am too tired to read it right now, haha) but I htought I'd give an update. I stopped all TBD TX becasue of lack of dr. for the last several months and I can feel that flairing at times (like right now), but my concussion issues have greatly improved from last year.

I just had a re-eval in the vision concussion clinic and the specialist there is very good!

she knows all about the concussion /TBD issue and how it takes the brain of lyme ppl MUCH longer to heal from TBIs.

I have been diong vision therapy for a few months and saw goods steady improvement. It looks like I will have a full concussion re-eval soon and see if I need to go back to OT and/or PT and then restart another round of vision therapy after that.

phew!

lots of hard work ahead and although I have not been the perfect patient doing home therapy, I can now make some of my old food recipes and I can now listen to music!!!!

I suddenly want music on all the time and I can tolerate it, which makes me feel a little like my old self. I have not listened to music for more than one or two songs of a certain variety. in over a year.

I am still struggling much with my creativity and find it painful in my brain to try and draw or any other art form.

since I am an artist, this is crazy to me and I feel like my tries at it look like a preschooler created it, but I decided to sign up for a painting class and went to 2 classses so far.

They are very hard for me to follow along and to execute anything, but I am determined to prove myself wrong.

I hope all who read this are having a nice springtime.
[Smile]

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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Lymetoo
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You are doing a great job!!

Keep going on those art lessons! You will get it back!!

--------------------
--Lymetutu--
Opinions, not medical advice!

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daisys
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I can relate to you, Lisa--making art is important.

The mind needs to have focus to create something satisfying. That's not always easy.

I have found a clay product that is ideal for me to create at my leisure.

It's really easy to use and doesn't dry out, but gets really strong when baked.

There's no rush to finish a project, and no waste if it's left for another time. I can work with it for 15 minutes and then leave it.

The finished products are good for indoors and outdoors. After years of winters in the yard, what I've made still looks just as new.

I've made birdhouses, re-tiled a ruined table top, and have made 3d paintings by applying flower petals to flower paintings.

This clay is available in colors, or can be painted. For outside use, cheap acrylic paint is great. There are small containers of outdoor house paint that can be used.

My first love is fine art painting. But, for me, any artistic activity keeps me from depression, so I sometimes go for the lower stress projects.

I hope you recover from the concussions quickly, and find joy to support healing.

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Ann-Ohio
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daisy's, What is the name of the clay product? Where can one get it?Thanks.

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Ann-OH

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daisys
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I get Super Sculpey--not the original--which I order from Dick Blick art supplies online. There may be comparable products out there.

Have fun!

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LisaK
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THanks Lymetoo!!!

thanks daisys!!! - what is the clay brand?

oh super sculpy! yes I used to work with that!

I am diong an apple in oils. the instructor wants us all to do an apple.
Can I upload a photo here/ it used to be quite the undertaking to do so- is it still hard to figure out?

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Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

Posts: 3558 | From Eastern USA | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
   

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