posted
Even though I'm not ready to check out just yet, I'm very ill with neurological Lyme. As a result, I've been thinking about ways I can contribute to Lyme research beyond the few dollars I can afford on my fixed income.
Given that I meet all of the standard criteria for Lyme (EM, positive tests, etc.), suffered acute meningitis, the whole gamut of physical symptoms, and most of the neurocognitive and neuropsychiatric symptoms as well, I would like my final contribution to the battle against Lyme (and Lyme ignorance) to be my body. With everything that's gone on, and gone wrong, in my body, I can't help but think that it would of some value to Lyme research.
There are any number of generic programs out there for donating your body to science, but the donor can't specify that it go to a given research organization.
If you have any idea how I might go about donating my body to Lyme research or ideas on where I might start looking, please let me know.
Thanks!
Dave Jossi
PS: I hope I haven't offended anyone with this post. Believe me, I'm a long way from giving up and I don't intend to do down without a long, drawn-out battle. But it would give me great comfort to know that, even at the end, I'm going to be able to give something back to all of the other Lyme victims whose love and support has kept me going and fighting.
Posts: 3 | From Estero, Florida | Registered: Apr 2008
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posted
Thanks so much for bringing up a subject that ....well , it's just not a subject you're sure how it's gonna be taken. I don't know the answer either, but if I'd known 20 years ago what I know now, I would have like to
have known just what it was that my Mother died from. Until I became infected and started learning
about lyme, I didn't know what was wrong with her and no one will convinced me that it wasn't lyme.
The drs. ,and believe me there were many, and as many drs as there were...... there were that many
tests being done on her only to be told well, it's not this......or, it's not that.
She had terrible leg pain for years in her 40's, then her kidneys were affected. She was put on
dialysis, only 5% of her kidneys were working. Their answer was pretty high doses of prednisone(sp), Her
legs got worse and she was diagnosed with vasculitis. Till it was all said and done the veins
collapsed in her legs and within a year she lost both her legs. At the age of 57 she passed away and
I can't even remember all the symptoms she had at the time of her death.
But I'm with you about people with lyme donating theirselves to research.
I'm sure my Mom would have, hoping it would save someone else the pure HELL she had gone through.
It is a very sensitive subject but I believe it's important to start the dialog
Posts: 158 | From PA. | Registered: Jul 2006
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Brave Soul,
I 100% concur with you, and hope that someone will be able to direct us. I was an anatomical donor, but with lyme, I don't think that my organs will any longer be considered a "gift" to any needy recipiant.
I have also removed myself from a bone marrow donor registry since Lyme Dx.
But, if upon my death, hopefuly, many years down the road, I am able to assist in ANYWAY W/ tbi RESEARCH I would like to know how also.
feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Dave,
I have wondered the same thing for many years. I've no answer however, I wanted to ask if you meant to sign your full (real?) name to the letter?
Anytime any one does a google search on your name, that letter will pop up.
For reasons of security (family, job, insurance, creditors, hackers, etc.) you might want to consider deleting your last name.
FWIW, I agree with your reasoning and would hope that my body could talk for me after I'm gone so that others could have a better life - especially since we cannot donate organs. It would be nice to learn from the evidence.
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I have been sure to tell my husband and my children to call my LLMD when I die. They are instructed to let the LLMD (or another one that he refers them to), to look at what they want, take samples, etc. I don't want my whole body donated, but I want people to be able to learn from me.
I think there are so many ways - donating body, doing what I'm doing, etc. - that you need to be sure your next of kin know your wishes.
Even if you were an organ donor on your driver's license, they still have to get permission from your next of kin.
Let people know your wishes.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
This was information posted a couple of years ago that might be helpful.
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Send my body to Dr. House, let him diagnose my illness, and send it back with a note to the 25+ doctors I've seen saying...."look idiots, the patient had this. That's why they were sick for 10+ years! " Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Most hospitals can do tissue biopsies at time of death (no need to donate entire organs or body) to many organs and have them sent to wherever you wish. I guess the question is WHERE should lyme patients send?
Seems to me Columbia Univ. would be the prime candidate for starting a tissue bank for lyme patients. I don't know who the head of the tissue bank is there, but I could start digging and make some calls etc.
Anybody have any other comments or have any more info.????
I did not know, as Tincup stated, that Igenex would accept tissue samples. Have to check that out and see what they say. It wound be horrible if they were to get flooded with tissue donations and find out that they really are NOT set up to store thousands of tissue samples!!
I'll be back later to report in........
If Tincup sees this maybe she will come back and add more to the link from her 2006 post.
Take care,
Gail
-------------------- Strength does not come from physical capacity. It comes from an indomitable will ~ Gandhi Posts: 562 | From Wellsville, PA, USA | Registered: Jan 2004
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bettyg
Unregistered
posted
melanie,
i was going to look for tincup's informative post about her donating her body....thanks for finding it first!
the bottom line is still; will your LOVED ONES RESPECT "YOUR" DECISION ABOUT WHAT "YOU" WANT DONE and NOT what they want done during this horrible time in their life!
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Dave...
Nice to know you are planning in advance. Good for you. Hope the post Melanie brought up... thanks Melanie... will be helpful.
PG said.. "I did not know, as Tincup stated, that Igenex would accept tissue samples. Have to check that out and see what they say. It wound be horrible if they were to get flooded with tissue donations and find out that they really are NOT set up to store thousands of tissue samples!!"
Not to make light of a deep conversation... or laugh... or to say anything offending by any means PG... but...
Hopefully thousands of us won't be kicking the bucket at the same time!
I see your point though. But from what I understand and have checked out since this post...
Samples are scarce.
There are companies willing to pay for blood and tissue samples in living patients with Lyme already. As more research is being done.. some places are paying good money too. There are several companies I have spoken to about sample donations.. and they have expresses there is a problem getting access to the material they need because it is hard to find.
The vaccine's and other work being done... and more will be done as time goes on and funding increases... should make the samples we can provide later, in demand.
IgeneX was doing studies on tissue and blood samples they could locate at the time I contacted them. My assumption is they get them rarely... and use them up quickly... and therefore don't need a lot of actual storage space... at least right now they don't.
But.. maybe in the future someone... even IGeneX will get the storage needed to take in even more tissue for more studies. Someone will have to take this on eventually.
And if Igenex doesn't need the samples at the time of my death... I am sure IGeneX will know where they could go to be used or stored... and will be able to refer family members to the place. They do keep up with the latest... so I feel confident that any parts of me that are needed.. can and will be used by them or someone.
Again.. not to make fun... but...
It would be very difficult for all of us to do daily inquiries to keep track of what can be done with our samples in the event we don't make it till the next day... so putting it in IGenex capable hands makes me comfortable.
And do note.. it is a small sample that is needed... not the entire body. My guess is one person's tissue samples would be small enough to fit in a thimble... so that is good news as far as storage goes.
Hope that cleared up the questions... but if not, please ask. I will be glad to try and get answers.
posted
I need to have some surgeries and I wonder if Igenex would want to analyze tissue samples.
Has anyone inquired about this recently?
Posts: 262 | From nj | Registered: Dec 2007
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Great topic. I wasn't aware of the Igenex aspect, so this has been very informative.
I do know that for awhile, Columbia Lyme Research Center was looking for "samples" but I haven't been out to their site in quite some time, so I don't know if this is still valid.
I only mention it since I do know that even though it may seem mobid for some of us to be thinking this far, I too am 100 percent behind making sure that when my time has come, they can have anything they want to help with science for the sake of other lyme patients.
I too am NOT going down without one heck of a fight, but I'm also hoping that when I do go down, that something can be learned from tissues in our bodies to make life easier for others suffering from this disease.
And yes, from my understanding, you need to make sure that no one in your immediate family is opposed to this, since from what I hear, all it takes is one to fight it and tie it up in court and then it's too late.
So talk to your family members and make sure they know how important this is to you. I know I have.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
when my mom died i talked to ilads and they said the researchers they knew were not taking anymore bodies
but it changes
i would put their contact info where someone can find it when the time comes
re:surgeries
i have had so many and had a really hard time getting tissue tested
i have a new llmd. when he heard i was getting a colonoscopy he automatically filled out forms for the gi doc to send tissue it really helps to get an llmd to order it
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lymeloco
Unregistered
posted
I can get you a name of a place that will accept donations for lyme research but you'll have to wait till next month for me to get the name and address.
I was also told that Columbia was taking donations. I know your not ready and either am I but it's a wonderful idea that you do. We need more people like you to help us toward a cure for this horrible disease.
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bettyg
Unregistered
posted
loco,
i'm NOT heard or read the columbia is accepting tissue, etc. that's one thing that excited me with their opening ... lyme autopsies to learn from.
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posted
When you say tissue for rearch, I am thinking slide biopsies, no? I often wonder if I could have my lost gallbladder tissue which is on a slide at RI Hospital analized (did I spell that right, change the y to i and add zed?) by a reputable lyme literate research center? Anyone know?
Not ready for the autopsy part yet I hope...
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
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lymeloco
Unregistered
posted
The Lyme Disease Research Center will use the vast resources of Columbia University in New York to address fundamental clinical and basic science questions that plague adults and children affected by Lyme disease (LD).
While much is known about early Lyme disease, very little is known about chronic Lyme disease, despite its rising prevalence and disabling effects. These effects may include arthritis, cognitive loss, peripheral neuropathies, and debilitating fatigue.
Rarely, LD may also cause strokes, blindness, severe psychiatric disorders, and multiple-sclerosis-like illnesses. Children may be home sick for months or years, missing the key academic and social influences so critical to healthy development.
Our clinical and research mission includes studies of new diagnostic tests, clinical phenomenology, immunopathogenesis, co-infections, genetic markers of vulnerability, functional and structural brain imaging,
neuoropathology of post-mortem brains, and well-controlled studies of new treatments.
This Center, the first such facility in the world devoted to chronic Lyme disease, will serve as a national resource, providing pilot grants to researchers nation-wide and focusing the latest scientific technology on helping to resolve the problems of chronic Lyme disease.
Researchers at Columbia are now completing analysis on a 5 year NIH-funded study of the pathophysiologic effects of Lyme disease on the brain and whether a repeated longer course of IV antibiotic therapy helps to reverse the cognitive and physical dysfunction experienced by previously treated patients.
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posted
Great thread, I'm glad to see that this continued......I know it's morbid but I have been thinking about this myself for the past 4 years. It's something I feel very strongly about.
Lymeloco whenever you get the name of the lab, please come back and let us know!!!!
I emailed Igenex and got a response today:
I am sorry but we don't have facilities for a tissue bank. We can provide testing if requested but we usually only save samples for 3 months.
Thank you for considering IGeneX.
Thanks
Toni
Gail
-------------------- Strength does not come from physical capacity. It comes from an indomitable will ~ Gandhi Posts: 562 | From Wellsville, PA, USA | Registered: Jan 2004
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-------------------- Strength does not come from physical capacity. It comes from an indomitable will ~ Gandhi Posts: 562 | From Wellsville, PA, USA | Registered: Jan 2004
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-------------------- Strength does not come from physical capacity. It comes from an indomitable will ~ Gandhi Posts: 562 | From Wellsville, PA, USA | Registered: Jan 2004
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Patients with a history of well-documented Lyme disease who wish to add to their wills a statement regarding donation of brain, spinal cord, or other tissue should contact us.
In addition, these patients should complete the on-line clinical history form and be as thorough as possible.
Putting aside in a safe place one's medical history and laboratory tests can be an invaluable aid in post-mortem investigations.
This kind of a donation is an invaluable component of a better scientific understanding of the neuropathologic effects of Lyme disease.
Dr. Andrew Dwork directs neuropathology investigations and should be contacted when brain or spinal cord donations are considered (212-543-5563).
THIS IS EXACTLY WHAT I WAS LOOKING FOR!!!!!!!! Can't wait to call Monday...
Gail
-------------------- Strength does not come from physical capacity. It comes from an indomitable will ~ Gandhi Posts: 562 | From Wellsville, PA, USA | Registered: Jan 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
ilads seems to know who is accepting what at any given time. it changes. and there are a lot of hoops to jump thru. i went thru it with my mom.
i think, after what i went thru, your best bet is to have a few close friends or family members who are on your side understand what has to be done and how to do it. again -the problem is things change over time. grants run out. some researchers get more bodies (or parts) than they can handle. so the person helping needs to understand the whole process...and how important it is to you---it can't be just one phone call or whatever...things change and it can turn into a big deal.
it shouldn't be this hard...but right now it is.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Lpkayak, You are exactly right!!! Let's hope Columbia keeps this tissue bank open for a LONG TIME!!!
And no I did not remember to call Columbia today........grrrrrrrr!!
Gail
-------------------- Strength does not come from physical capacity. It comes from an indomitable will ~ Gandhi Posts: 562 | From Wellsville, PA, USA | Registered: Jan 2004
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
I cannot connect to the Columbia Lyme Research Center; I wonder what happened to their website?
-------------------- Strength does not come from physical capacity. It comes from an indomitable will ~ Gandhi Posts: 562 | From Wellsville, PA, USA | Registered: Jan 2004
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-------------------- Strength does not come from physical capacity. It comes from an indomitable will ~ Gandhi Posts: 562 | From Wellsville, PA, USA | Registered: Jan 2004
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Thanks Gail! I began to get worried when I saw the site was down yesterday.
They must have been upgrading it; it looks all new and much improved! Posts: 2557 | From home | Registered: Aug 2006
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