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» LymeNet Flash » Questions and Discussion » General Support » tincup or anyone who knows about donating brain to research

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Author Topic: tincup or anyone who knows about donating brain to research
lpkayak
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I thouggt there was a recent post about this but everywhere i look nie it seems noone wants lyme brains. And im finally getying a will done

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Lyme? Its complicated. Educate yourself.

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
TF
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Contact BettyG at MDJunction's lyme forum. She gave her husband's brain to Dr MacDonald for research purposes.

You can find her here:

http://www.mdjunction.com/forums/lyme-disease-support-forums/studies-research

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me
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I was wondering about this, too. Good to know. Thank you, both.

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Just sharing my experiences, opinions, and what I've read and learned. Not medical advice.

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lpkayak
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ty the latest i read is macdonald not taking them now

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Lyme? Its complicated. Educate yourself.

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
Ann-Ohio
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Tom Grier might know.

Maybe you could donate your body to a medical school and ask that they autopsy your brain for Lyme and related issues.

I am going to medical school when I die.

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Ann-OH

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Tincup
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Organ Donations

https://sites.google.com/site/marylandlyme/memorial-page/advanced-directives-info

Wills and Advanced Directives- Forms

https://sites.google.com/site/marylandlyme/memorial-page/advanced-directives-forms

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www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Keebler
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Be sure to specific with any organ or tissue donation arrangements that it is for research only - never for human transplant.

For those new to all this, that is because blood / tissue / organ donations to living humans could spread lyme and other tick borne infections to those who are most vulnerable. And then they'd be in a much worst position.

As for researching, most university medical colleges will not know what they would be looking for or looking at regarding lyme / TBD.

Now, hopefully, that will change and, of course, they need samples in order to study but as most university medical centers are dead seat against the very notion of lyme, chances are they are not the ones to look to for this matter at this time.

Best to arrange with directions from very literate LL pathologist researchers on the topic, such as Alan MacDonald or maybe ILADS or LymeDisease.org could offer advice.
-

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Tincup
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LymeDisease.org- Not prepared to accept anything at this time. Recently they stated....

"LymeDisease.org expects to partner with the National Disease Research Institute (NDRI) to store biospecimens such as blood and tissue donated by patients with Lyme disease.

The NDRI is a federally funded non-profit that is regarded as the United States’ premier source of research tissue.

By serving as the liaison between tissue and organ donors and the scientific community, NDRI is uniquely positioned to support breakthrough research in Lyme disease."

BettyG's & Tom Grier's info...

http://www.mdjunction.com/forums/lyme-disease-support-forums/medicine-treatments/3370351-making-brain-autopsy-arrangementstips-

The only donations ILADS is asking for appears to be your money and your vehicles.

Dr. Eva Sapi MAY be interested in blood, tissue or organ donations. Ask your family to contact her at the appropriate time. Please don't be bothering her in advance because it will depend on what grants she has and what projects they are working on at the time of your death.

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www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Keebler
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To clarify:

LymeDisease.org and ILADS suggested only for advice, not for actual tissue donation / receipt and to look over their websites / articles to see if they have any such advice.

Tincup, thanks for the additional notes.

Also note that a lot will depend on how much money would be left in deceased estate as there are costs involved with all this. And there would have to be someone to do the clerical / leg work upon death, too.
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lpkayak
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I thought i could do it before i die b u t i guess not. Family will not cooperate

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Lyme? Its complicated. Educate yourself.

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Tincup
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Kayak said.. "I thought i could do it before i die but i guess not."

No. Sorry kayak. We won't let you donate your brain to science before you die.

You actually may need to use it sometime between now and then.

Plus, I've heard that surgery can be a little painful. And afterwards, with nothing more than a flat lump sitting there between your shoulders, it is almost impossible to wear a hat. And forget about earrings!

May I suggest?

Write up the paperwork to do what you want. Have the administrator of the Will on board. Often if it is IN your will and it is YOUR wishes, no one will object. Even with those who would object otherwise just to start a fight.

The forms are at the links I shared above.

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www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Keebler
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I called Science and asked if they could do anything with my brain because I sure can't. They just laughed.
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lpkayak
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Tinny my friend...i did want to write stuff up first...but its tricky and i think the executor could stop it by just waiting too long...it all has to happen fast

I ll write it in but who knows wgst eill happen. I spent hours trying yo m a ke it hsppen for my mom...paul duray tried to talk me thru it...i couldnt make it happen

At this point whatever...

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Lyme? Its complicated. Educate yourself.

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Tincup
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Betty G asked me to post this for you kayak.

https://www.youtube.com/watch?v=ILbBsBVmSHQ

Additionally, she said.. "also, unless her executor will HONOR HER REQUEST, THIS WILL NOT BE DONE as she wanted. tom grier told me at 1 time, they had it made up in paperwork that if family did NOT go thru with this, it would still cost them $$$ naming amount of money regardless."

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www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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me
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I contacted lymedisease.org, and they gave the following suggestion regarding donating bodies for Lyme research:

http://columbia-lyme.org/research/columbia_specimen_bank.html

I hope this is helpful.

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Just sharing my experiences, opinions, and what I've read and learned. Not medical advice.

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Eight Legs Bad
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LPKayak, although Alan MacDonald's Dr.Paul Duray Research Fellowship Endowment is not actively seeking brain donations at this time, they are able to do testing if patients are able to pay for the initial preparation procedures,

and the costs of certain lab procedures not done in-house. (The foundation is non-profit, but they have to pay the costs of some work done outside.)

You can address an inquiry to the CEO (microbiologist Tom Grier) via the email below:

[email protected]

I truly hope you will not need to think about this for a long long time to come - or better yet, get cured.

But for peace of mind, you can contact Dr M's foundation, as they are using the best, state-of-the-art methods to detect Borrelia and also can detect parasitic nematode worms.

I would strongly NOT recommend anyone donate any tissue or even blood to Columbia. Dr F, who runs the Lyme institute there, has for some years been publicly championing the C6 Elisa test, which is a hopeless insensitive test, just like all the other Elisas.

We use the C6 here in UK, and 92 out of every 100 patients are negative - many of whom go on to suffer for years from terrible Lyme symptoms.

Dr MacDonald's Foundation has retrieved Borrelia from the brains of dead patients who were negative on the C6 elisa.

More about the Duray foundation here:

www.durayresearch.wordpress.com

Elena Cook

(editing out last name of doctor)

[ 09-20-2016, 08:22 PM: Message edited by: Robin123 ]

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Justice will be ours.

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