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Dear all

One of the two autopsy studies done by Dr Alan MacDonald and mentioned in this report relates to the husband of Lyme activist Betty Gordon.

She has asked that I add the following information re her husband Jack:

"

Jack was NEVER diagnosed or treated for either Borrelia/lyme disease OR lewy body dementia.

Using Jack's medical records, Jack was bitten 35 yrs. prior to his death 11.13.14.

His dementia goes back at least 2+ yrs.

He had horrible, VIOLENT hallucinations where he would wake up screaming and being afraid that this dream came alive.

He hallucinated for at least 3-4 years but it was the last years they became violent.

He saw imaginery people and would go to the front/back doors talking to these vivid dreams.

1 of the worst times I remember was him waking me up asking me who were the 2 little foreign boys sitting on our basement stairs?

We had a young neighbor who would visit us regularly, so I thought it was him.

NOPE, no one there. He'd been seeing/talking to these 2 boys at night time for 2 weeks at least.

I started writing/typing his comments since our pc is right by his side of the bed.

I read back some of the wierd, strange comments he'd made the night before. He requested I never do that again so I didn't!.

At 1 time, there were 3 Betty's living here!

1 night he dished up 3 dishes of ice cream. I asked who the extra one was for...the other Betty sitting by you on the other side!

I was NOT his wife of 40 years.

This was NOT his home of 39 years.

He called me his mom's name one night as he regressed in memory.

Due to his advanced Parkinson's disease, Jack was falling all the time but would just "sit" down when he felt a fall coming and didn't injure himself.

He was so weak; fatigue was bad; and he would have profuse sweating just walking across the room.

The worst was 2 weeks before he got very sick and ended up in ER with pneumonia and non-stop diarrhea.

He was having a more lucid night. He told me he wanted to have a serious talk with me.

Betty, I want to go and live on MY OWN; I'm not happy in our relationship.

Jack was in no shape to do this. For at least 1+ years, I had been lifting his legs up/down to get him in/out of bed.

I walked backwards hanging onto him leading him from 1 room to another.

Helping him get out of our dining room office chairs on wheels since our heavy oak chairs, I couldn't move him at all.

Later, I realized this was Jack's way of telling me he had NO quality of life on earth, and was ready to go to heaven!

On one of his last lucid nights at the 2nd nursing home, he told me, "Betty, you'll never know how much I love you. Thank you for taking such good care of me all these years; I appreciate you."

So this last memory made up for the "I want to go live on my own" speech.

At 2nd nursing home, one of the night RNs diagnosed Jack with Lewy body dementia as he had same symptoms as 1 of her other patients so was used to that type of moody behavior, hallucinations, and not wanting to take a shower without fighting with them!

At 1st nursing home, I night he was 100% lucid; we had the best talk that night for hours. As his aid was wheeling him to his room, she commented, "Jack, it's really nice to have YOU here tonight with us".

Jack, "YES, I KNOW WHEN I'M HERE AND WHEN I'M NOT HERE!"

I hurried to his room to pursue this conversation, but he'd changed the subject. With Jack, you didn't push it to resume something or he'd get upset.

Wished we could have talked another 1-5 minutes about knowing when his mind wasn't working and his hallucinating!

So I donated Jack's body to Des Moines, Iowa osteopathic college for medical studies by their students of 7 different occupations.

What I didn't know was this:

They removed Jack's brain putting it correctly into formaldehyde preserving it so students could study the brain also.

When I made arrangements with college on day Jack was dying, I asked for a brain autopsy; NOPE, we don't do them, but didn't add they remove them.

Or I would have had Jack's brain sent to Norman, Okla. to Paula Pierce's Excalibur lab for blood staining promptly.

Paula sent Jack's slides then to Dr. Alan MacDonald for his DNA slides and more were done since Jack was 1ST WORLDWIDE with these 2 diseases together!!

We wrote a scientific medical journal article; Tom Grier, writer, and Alan are making FINAL editing of it so it can be published in 1 or more journals in future.

Get this! I'll be shown as 1st co-author, a NON-MEDICAL person, over 3 medical folks! WHOOPIE!

Another thing I discovered was this:
some might publish free;
another one charges $2,000/article for publishing!

no wonder things don't get out promptly; people can't afford paying those prices for 1 or more journals.


My reasons for having Jack's brain autopsied was simply this:

I wanted to know what Jack had by scientific evidence vs. what drs. were "guessing" he had all these years!

It's the "peace of mind" to have CLOSURE knowing what I'd been contending with all these years.

Jack took good care of me as he married me AFTER I'd been bitten 5.5 yrs. earlier, unbeknownst to me!

So Jack never knew me well {:


I've also emailed Iowa's Dept. of Health director to get Jack ADDED to Iowa's CDC lyme statistic map going back 35 years since I have scientific proof he had BB/lyme in the brain!

So far I have NOT heard back from them!


Also, I wrote a 2 page letter to our local, large clinic requesting that they have 3-1 hr. ground rounds of TOM GRIER'S skype presentations on:
BASICS OF LYME;
LYME & MS;
LYME ON THE BRAIN

included Tom's 2 pages explaining what his courses were about.

Told them they had FAILED both of us for 35 yrs. of not getting us diagnosed and treated!

They too have not replied in the week they've had my letter and it went to the board of director's president, Jack's neurologist.

I addressed 2 things to him when I dropped off a copy of Alan's diagnosis brain autopsy results in Nov. & requested again in recent letter:

why didn't he diagnose Jack with LBD since I'd reported his VIOLENT hallucinations & hallucinations in general?

why wouldn't he or our pcp ORDER Igenex western blot testing as both stated, "it was NOT warranted" ... no symptoms of it!

Well, I got on a roll and couldn't stop as most of you know me by now, I can get rather "gabby"

BettyG, Iowa widow/activist of many health issues for Jack and me ..."

Elena's comment:

Lewy Body Dementia is well-known for causing florid hallucinations, which can be terrifying for the sufferer and very distressing for his family.

Like other dementias, it's very common for the victim, in the late stages, to forget even the most important life events, and he may fail to recognise his wife, children, grandchildren etc.

In cases like this, the amount of suffering for the whole family cannot be overestimated.

Lewy Body Dementia is somewhat different to Alzheimer's and other dementias, in that the victim's mental state will often fluctuate.

This explains why Jack had "windows" of clarity where he was able to remember his wife, and thank her for so many years of devotion and caring for him.

These two cases are the first documented cases of Borrelia implicated in Lewy Body Dementia.

Had doctors been informed enough to take Mrs. Gordon seriously all the years she was begging them to consider a Lyme diagnosis, perhaps this tragedy and this suffering might never have occurred.

Elena Cook

quote:

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Originally posted by Eight Legs Bad:
Source: Dr. Paul Duray Research Fellowship Endowment Inc

www.durayresearch.wordpress.com

Newsletter No. 4

(snip)


(1) Borrelia DNA and antibodies to Borrelial proteins found in Lewy Bodies


From the F1000 poster by Alan B. MacDonald, MD, FCAP:


"Diffuse Cortical Lewy Body Dementia (DCLBD) is a neurodegenerative disease of unknown causation. Under the microscope, in the cerebral cortex of the human brain are numerous Lewy Bodies. ...Herein are presented two autopsy cases of DCLBD Dementia in human patients in their seventh decade of life. ...


"Herein we present that the Lewy Bodies in DCLBD are in addition immunoreacitve for Borrelia burgdorferi proteins by Immunohistochemistry (IHC) studies using rabbit antibodies against whole cell lysates of pure cultures of Borrelia burgdorferi
spirochetes...

"Further, we demonstrate the hybridization of DNA probes specific for the DNA of Borrelia burgdorferi, by Fluorescence In Situ DNA Hybridization (FISH) ...


"These two data sets establish that a heretofore un-imagined linkage exists between chronic (Tertiary) neuroborreliosis in the human brain and the development of Diffuse Cortical Lewy body Dementia..."

View full report of these two tragic cases, with micrographs, here:

http://f1000research.com/posters/5-127

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Posts: 786 | From UK | Registered: Oct 2007  |  IP: Logged | 

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quote:

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Originally posted by bluelyme:
Is betty g still fighting? I have read a lot of her old posts on mdj...i can understand why robin william did what he did. My grandmother is repeating things over and over it is a hard thing to watch...or imagine that i may go there

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Posts: 786 | From UK | Registered: Oct 2007  |  IP: Logged |