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» LymeNet Flash » Questions and Discussion » Medical Questions » Lewy body dementia

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Author Topic: Lewy body dementia
purplehaze
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https://www.facebook.com/rteradio1/videos/1841969585860736/


anyone heard of this or know anything about it,?
sounds like a horror show of epic proportions

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Keebler
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Indeed, it is very devastating. Yet, it is important to for everyone to know a bit about it for various reasons.

I hope you perhaps just stumbled upon that and are curious rather than having someone in your life who may have just received the diagnosis.

This is the disease that ended the life of actor / comedian Robin Williams (via suicide when he got so bad he felt he could not continue).

https://www.lbda.org/go/what-lbd-0

Lewy Body Dementia Association

What is Lewy Body Dementia?
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Keebler
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https://www.scientificamerican.com/article/how-lewy-body-dementia-gripped-robin-williams1/

How Lewy Body Dementia Gripped Robin Williams

Hit by a vicious case, the actor said he wanted to “reboot” his brain

By Rebecca Robbins - Scientific American - September 30, 2016

Excerpts:

. . . About 1.3 million Americans have the disease, which is caused by protein deposits in the brain. Williams was diagnosed with Parkinson’s disease a few months before he died; the telltale signs of Lewy body dementia in his brain were not discovered until an autopsy. . . .


link to the editorial mentioned in above piece (by Robin Williams' wife):

http://n.neurology.org/content/87/13/1308.full

The terrorist inside my husband's brain

By Susan Schneider Williams - Neurology - September 27, 2016
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Keebler
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https://www.lbda.org/content/lewy-body-dementia-assoc-responds-passing-casey-kasem

Lewy Body Dementia Association Responds to the Passing of Casey Kasem - June 18, 2014


https://en.wikipedia.org/wiki/Casey_Kasem

Kemal Amin "Casey" Kasem (April 27, 1932 – June 15, 2014)

was an American disc jockey, music historian, radio personality, voice actor, and actor, known for being the host of several music radio countdown programs, most notably American Top 40, from 1970 until his retirement in 2009 . . . .
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purplehaze
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Keebler,

I just stumbled upon it when going through a Lyme forum,

my goodness, I didn't know that 2 high profile guys lost their lives with this and that 1.3 Americans are suffering from it

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Keebler
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Good to know you just stumbled upon that and had curiosity to learn more. Glad to know you were not having to seek out information for someone close to you, though.

I often wonder how many out in the world deal with this but do not know and may never even find out (extreme mental health, homeless issues come to mind).

Going back to your post, here's a very nice interview / book review and - as the first, first-person book account for someone alive and prior to the worst segment of it, this should be a very important work - and it could lead to some breakthroughs &/or methods of management:


https://www.independent.ie/regionals/corkman/lifestyle/kevin-pens-world-first-account-of-lewy-body-dementia-37057143.html

Kevin Quaid pens world first account of Lewy Body Dementia

Broadford boy has published a fascinating account of his battle with his progressive condition.

By Maria Herlihy - The Independent (from Ireland) - June 30 2018
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Keebler
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purplehaze,

Thank you so much for your first post. I've learned a great deal about this and even if just being lead to find this essay, my life is enriched for having read it:

Just finished reading Susan Schneider Williams' essay to doctors in Neurology. An excellent piece of writing - by any measure. I hope everyone will take the time to read it and take it in. And share it. This essay is truly prize worthy.

That link, again: http://n.neurology.org/content/87/13/1308.full


She is currently on the board and working to help others:

https://www.americanbrainfoundation.org/crowdfund-for-cures/support-a-project

American Brain Foundation - Projects
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purplehaze
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keebler,

yes, that is quite a story on Kevin, and to think that's just a snippet from the book, I feel very tempted to purchase it

btw, this is not my first post on here, I've posted a numbers of times over the years

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Lymetoo
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Isn't it very similar to Parkinson's? My father had that .. and probably had Lyme. He was exposed to a lot of chemicals also.

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

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Keebler
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purplehaze,

I meant the first post - of this thread. I know you've been here a while and have enjoyed your posts and even more so, enjoyed your name as it invokes a gentle ambience of nature much like Ireland, perhaps, (though not when I think back to the Jimi Hendrix rock tune of that name -- I stick with the nature experience ).
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Keebler
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LymeToo,

you ask if LBD is similar to PD. Yes, there are striking overlays yet they do not always go together. The articles & links have really great explanations about how the two may both be on board for any one patient (or not), what's "shared" and what the differences are.

Sorry to hear of your father's experience with PD. As you suspect he may have had lyme as well (or perhaps it may have even caused PD like symptoms (there have been some PD patients who later when diagnosed and treated for lyme recovered from the previous PD like symptoms)

Even in cases of fully correct PD diagnoses, certainly lyme could also contribute to that, or to the onset time.

Genetics also plays a role though it's not always the driving factor when other things "turn on" certain genes that were previously dormant.
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Robin123
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Someone who used to be on this forum had a husband who passed from this condition - pathologist Dr Alan MacDonald found Lyme spirochetes in the autopsied brain tissue.

Robin Williams was local for me. If I had known he was ill, I would have tried to communicate with the family about checking out Lyme disease. But we didn't know anything until after he was gone.

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Keebler
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Tom Grier is a superb microbiologist who is expert in lyme research.

https://madisonarealymesupportgroup.com/2016/03/28/did-robin-williams-have-lyme/

Did Robin Williams Have Lyme Diseae?

Madison, Wisconsin area lyme support group - 3-28-16

The results are in. The autopsy report shows Robin Williams had Lewy Body Dementia, and microbiologist Tom Grier has a hypothesis:

“Alpha-Synuclein deposition inside the neurons may be a consequence of the presence of Borrelia inside the same neuron.” . . . .


http://whatislyme.com/lewy-body-dementia-putting-the-puzzle-pieces-together/

Lewy Body Dementia: Putting the Puzzle Pieces Together

by Thomas Grier, M.S. - March 28, 2016

(scroll down past initial visual board to see article)

Excerpt:

When the world first heard that Robin Williams committed suicide, most people were shocked.

After the release of his final medical autopsy report that showed he had advanced Lewy Body Dementia: his suicide became more understandable. His mind was very sick, and his prognosis was not good.

When we look at all the facts and observations about Lewy Bodies, we are presented with a puzzle that just doesn’t make sense.

How do Lewy Bodies form?

Why are some Lewy bodies located inside brain-neurons?

While other Lewy Bodies float in the extracellular spaces between brain cells?

Why are they observably different? . . .

. . . Our observations indicate that Borrelia bacteria (biofilms) are tightly “married” to the alpha-synuclein-ubiquitin deposits, and remains tightly bound even when the neuron dies.

As the neuron curls up and floats among the other living brain cells, it is now recognized as an extracellular Lewy Body. . . .

. . . . [Extensive article with great illustrations at link above]
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Keebler
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Robin,

You stated: " . . . Someone who used to be on this forum had a husband who passed from this condition - pathologist Dr Alan MacDonald found Lyme spirochetes in the autopsied brain tissue. . . ."

I think you might be referring to BettyG's Jack.

Scroll down to see the comment she posted after Tom Grier's article:

http://whatislyme.com/lewy-body-dementia-putting-the-puzzle-pieces-together/

BettyG posted on March 29, 2016:

Excerpt: . . . your article is timely with the events that have taken place in my life since jack’s LBD and neuro borreliosis diagnosis making worldwide history of the 2 being found together in anyone’s brain! . . . .


BettyG is a lyme & tick-borne disease advocate who worked exceedingly hard to secure a proper diagnosis & care for Jack during his later years as well as having pushed just as hard afterward to get the science on it documented. She knew. She just needed to get the proof. And she did.

Her account of her own struggle with chronic lyme as well as that her husband's is detailed here:


https://durayresearch.wordpress.com/our-work/alzheimers-disease-and-borrelia/eighty-two-years-as-chronic-lyme-disease-patients/

. . . their decades-long ordeal as victims of chronic Borreliosis, unacknowledged by the medical profession. . . .
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[ 07-26-2018, 04:45 PM: Message edited by: Keebler ]

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Keebler
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https://durayresearch.wordpress.com/about-2/7-provocative-findings-intro/

The Seven Provocative Findings of the Dr. Paul Duray Research Fellowship Foundation…and what they mean to Medicine and Patients

by Tom Grier , Microbiologist - July 2016

Excerpts [with separate article links for each heading]:

. . . 2. Finding Borrelia burgdorferi and miyamotoi associated with Amyloid Plaques in Alzheimer’s disease brains

3. Finding Borrelia in Lewy Body Dementia . . . .

. . . In 1997 Alan MacDonald was the first to prove by this brain-autopsy, that the Lyme bacteria not only entered the brain, but that the spirochetes penetrated neurons (nerve cells) and survived intracellularly inside human brain neurons. . . .
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Keebler
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For those reading who may be dismayed by some of this information, remember that information / knowledge is just that. Even when detail might shake us up . . . it's vital to look it head on in clear light.

And when learning all we can (by reading what the real experts are learning, anyway) keep in mind that no one future's is written in any hypothesis. Even with clearer connections or suspensions - rather than run, we can run toward the problem will all intention of solving it.

Where there are causal or correlation aspects, these can be links for us to consider. What may be for one person might be different for another.

When we know more - or at least consider as many sensible possibilities as possible - we might be able to better evaluate and explore methods to help us. Or, at least find the researchers who are really putting their minds and efforts to all this.
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LisaK
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what the heck? I have crazy sx like these. how do you know what the heck you really have? how do people find drs that know anything about any of this ?

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

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LisaK
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for example I went to a large city neurology dr because my local one was not helping after years of trying. and the prestigious top hospital and large city was just as unknowledgeable. then what? im tired of searching for things.

I mean , I don't think I have LB, but the poiont is how do some people get propper help while others fade away into the abyss??

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

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Keebler
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Q: " . . . how do some people get propper help while others fade away into the abyss?" (end quote)


Susan Schneider Williams essay in links above leads to her work on the board and working --- to help others:

https://www.americanbrainfoundation.org/crowdfund-for-cures/support-a-project

American Brain Foundation - Projects
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Keebler
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Not so much for LB, yet for matters of complications from lyme / tick-borne disease, follow the conference topics, articles, etc. at:

www.ilads.org

ILADS


www.lymedisease.org

LymeDisease.org
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artraveler
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Posting this for BettyG. My apologies, as I said I'd do this, then my computer crashed, I got super sick, then my dog got super sick (unrelated).:

"Jack's brain autopsy slides can be viewed on the Duray Research Foundation site here:
Duray Research

At the bottom of all the links on this 1 link is OUR story of my misdiagnosed Lyme disease also of 35 years leading up to Jack's health conditions/diseases.

Tom Grier, Minn. microbiologist, now executor of Duray Research Foundation, gave a 1.37 hr. video presentation on BRAIN AUTOPSIES of those in Midwest in Sept. 2016:

Lewy body dementia, MS, Lyme disease, Alzheimer's, and glioblastoma cancer

mnlyme

then click on Thomas Grier presentation to hear this.

After he's done with q/a, I get up and speak 7 minutes, found after 1.29 hr., from my heart as a Lewy body dementia/Lyme widow and what it meant to me have PEACE of mind knowing what Jack had vs. what the drs. said he had.

He was diagnosed with lung/liver cancer 2 NIGHTS before he died!!

I'm trying to get his death certificate amended to what the brain autopsy shows & tell about the fighting to get it done!

Also trying to get Jack added to Iowa's CDC Lyme statistics and what I need to do to get that done which goes back to amended death certificate!

We fight for their care, proper diagnosis and treatment while they are alive; some like me, fight still afterwards to get the injustices CORRECTED!!


last fall 2017, jacks 2nd brain autopsy was done by dr. marna ericson, univ. of minn., and they found 2nd TB disease: 2 species of BARTONELLA!!

.. cat scratch disease
.. other one deals with lice/homelessness which i can't figure out how that would have affected my jack!!

MARNA suggested i get my blood tested too. so i had 3 separate blood tests done every other day and sent to galaxy lab, no. 1 bart. lab in usa in NC.

2 months ago, results came back: I'M POSITIVE ON BOTH ALSO!!!

so does that mean that i've had bart for 49 yrs. this xmas too? i will never know!!!

i saw a local IDSA dr. who was kind enough to order these tests be done by galaxy lab in nc. he would NOT have ordered these particular tests for me since he's idsa, but he HONORED my request to do this!

unfortunately murphy's law happened again to me and my faxed results laid on his desk for 5 weeks buried until i called galaxy asking where they were.

he called me personally apologizing saying this was 1st time any results have been mislaid/buried; he meant it...i could hear it in his voice!

so i gave him usa's no. 1 bart dr. bob mozayeni.
they have talked briefly once. he WILL call him again to discuss what treatment often dr. bob recommends.

last week my local idsa dr's rn called me; they will talk 1 on 1 but both their schedules have been booked full, but she/local dr. ARE working on this as local dr. will be QUITTING practice mid august to go to penn. to be a TEACHER!!

UPDATED AGAIN 9.3.18--well mozayeni's admin asst NEVER got back to my local idsa dr before he QUIT here to go out east to teach!!! so i'm still in limbo!! he tried many times giving his dates/times he WOULD be available to talk by phone!!

so still in the future, marna will be working on SUBMITTING/PUBLISHING jack's worldwide history-making news of him having lewy body dementia, lyme disease, bartonella, and their finding a cluster of filarial nematode parasitic worms that also had LYME inside of them!!

dr. alan macdonald was going to write his part for submitting for publication but got sick and was unable to do this.

that's why i pursued this with univ. of minn. since marna got her OWN son's tb disease PUBLISHED and presented at the minn. lda conf. i went to 2 yrs. ago.

8.18.18 update: asked my lawyer last week to look into setting up a hearing date to get jack's death certificate amended. he's NEVER done one; so will need to study code laws!!

--------------------
May we all find peace one day and may peace prevail on earth ~ Traveler

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OzLyme
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Lewy body dementia - this is what I have feared I have for many months now, since it is the closest match with my symptoms. Muscle twitches, tremor, sleep disturbances, nightmares, and horrible terrible anxiety (has gotten better) which really made me understand why someone would suicide. This was before i really looked into Lyme (i live in Aus where its rarer).

However since I'm only 31, and ive recently found out I have CPn and most likely other TBD, Im hopeful that thats what it is, and treating this will help me recover. I am currently on roxy/doxy to pulse tinidazole, and taking CSM for mold exposure.

If you want something positive to read after seeing something on LBD, look up Dr Bredesen's work on Alzheimers and know that he believes the same results can be achieved for Lewy Body at some stage.

I have a whole theory on how these infections cause LBD / Alzheimers. I mean, they start in the olfactory bulb, the nose, and spread from there. Estradiol is protective, and Lyme and TBD infections seem to flare when this hormone is low.

Dr Dale Bredesen, who has treated Alzheimers disease and breaks it down into "subtypes" has identified that people with Lewy Body fit into the "toxic" subtype, which is usually heavy metals, pesticides, and mold toxins. I think this includes infections too.

So it looks like toxins + infections + low hormones + genetics, plus much more, can = lewy body disease. My problem is i have mold exposure and infections - so do I treat my infections aggressively, since it seems theyre a big deal here, or do I go after the toxins first since theyre also a big deal?

If you have any suggestions for me, the thread i posted about this, is here:
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=137326;p=0

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Bartenderbonnie
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Thank you and God bless you artraveler. [group hug]
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OzLyme
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The question is, I guess, why certain people get certain manifestations of tick borne diseases. For example, I doubt Lyme is enough for Lewy Body.

You probably need toxins, especially solvents which open up the gut and blood brain barrier, as well as a few co infections.

Ive suspected toxoplasma for a while, since it seems to affect the dopaminergic pathway. However haven't really looked into it yet, this as a theory may be already well known / shown to be rubbish

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OzLyme
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And yes, thank you so much atratraveler!

Just listening to the rest of that presentation of Thomas Grier... wow! Nematode worms containing the borellia are found in the brains of lewy body disease sufferers!

This very much goes along with my symptoms... i had recently decided I needed to trial an antiparasitic based on my night sweats most likely being babesia, or toxoplasma or something.... but maybe its nematode worms.

Anyway, gotta listen to the rest, and many questions to ask (i wonder if he lists his email, i may try email him) much to learn!

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Bartenderbonnie
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The links to this page are fascinating.
Thank you to all who posted.

Tom Grier and Dr Alan MacDonald are hero's to the Lyme community. Their dedication filters down to ALL neurological disorders. How blessed are we ?

Thank you to Betty G who NEVER stops fighting for Lyme patients. Thank you to Keebler, you are simply AMAZING !

If you want the latest news in breakthroughs in treatment, testing, and ALL areas of TBI's, LYMENET is the place to go. 💚. 💚. 💚. 💚. 💚. 💚. 💚

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