posted
I am so sorry to hear terv. I will be watching to see if you get an answer. My mom will probably die from lyme. She will not get tested even though I believe she gave it to me in utero and then I gave it to my children. It is so hard to watch knowing I could help if she would let me. I pray for you to have understanding of the ignorance people have and for you to stay strong and be able to fight for the answer.C
Posts: 58 | From GA | Registered: Dec 2014
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I actually disagree with Lymetoo, I don't believe anything good will come out of sending autopsy specimens to Columbia.
If you look at what Dr F has been doing in the last few years, you will see that he appears to have sold his soul to the other side.
In particular, his most recent paper where he slammed Igenex and other labs. His language is so offensive it could have been written by Allen Steere. And his promotion of the C6 Elisa is unforgivable.
The C6 Elisa is the screening test here in the UK; its sensitivity is completely useless and we have an "official Lyme incidence" of 1.7 cases per 100 000 as a result, even though we have the same ticks, flora and fauna as Holland which has an official figure of over A HUNDRED per 100 000.
What's more, Dr F (who is not a lab scientist or a pathologist, has never produced any results from his Brain Bank in all the many years and dollars of funding of his institute.
His brain bank did not even have positive controls (which are necessary if you are going to search For Borrelia in autopsied brain.)
Dr Alan MacDonald has recently been trying to attract support for his Paul Duray foundation which he set up to do autopsy research on Borreliosis victims, as well as to study the CSF and tissues of living victims. His emphasis is on brain disease and he has state-of-the art Molecular Beacon DNA probes, the best tools on earth to use in looking.
Unfortunately, unlike Dr F who gets funding from the Establishment, the Duray Foundation is not funded and must rely on donations from patients, which have not yet been forthcoming on any useful scale.
IMHO we should all be helping him as much as we can with this. We HAVE to fund our own research - we cannot trust research funded by Denialist public health authorities.
posted
Here is a video (first of three in a series) which Dr MacDonald made on the subject of death from Lyme PROVEN in the peer-reviewed medical literature.
posted
What about Clonegen laboratories? That is where I was told to send my daughters tissue. A scientist at univ of new haven gave this lab name.
Posts: 61 | From wilton | Registered: Mar 2010
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posted
I'm sorry. Its Clongen lab in Maryland.
Posts: 61 | From wilton | Registered: Mar 2010
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
It was very hard when my mom died. Paul duray tried to help me...he picked up every time i callwd. But we couldnt make it happen cuz the brother she was living close to couldnt handle what was gonna happen to hsrvest brain
She was cremated too
Four of five siblings are in lyme denial even tho they see me and many if them have sx and their kids have sx
It made me angry but i had to give up trying because i had my hands full fighting lyme and fighting sibs and other family members too
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
I think the best thing is to put in your will and directives you want your parts to go to lyme research. Word as strong as possible with lawyer help
Alan and eva might be able to give some direction too
The problems are things have to happen fast after they pass and in the right order...its hard to organize when nursing home or other ppl are involved
Good luck
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
What kind of tissue did you send of your daughters?
We are going down there tomorrow. Apparently she has shown some improvement but doctor wants to pull the IV.
Posts: 854 | From Somewhere | Registered: Nov 2010
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Tincup
Honored Contributor (10K+ posts)
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posted
So sorry to hear about your mother-in-law, bless her heart.
As for the brain or any other organ removal or donations or tests, I'd bet the farm you can not have that done. So sorry!
1. The person with the power of attorney with be in charge.
2. Even if she wanted this done and signed all the legal papers in advance, if one person in the family objects or acts like they don't want that to occur, the hospital will not do it.
Even if it's not Lyme related. Add Lyme to the mix and I'm afraid you won't make much progress at all.
Unfortunately, hospitals know that a person who wants to do something like that (donate organs) but has passed can not sue them, but living relatives can.
If I were trying to get proof of lyme and all conditions were right, and having been through this in my own and others families, I'd nicely ask the power of attorney person if you could get a blood sample to have it tested for MTHFR and genetics as it makes a difference in your health care and if MTHFR positive, theirs too.
Oops... actually not if you are not a blood relative, sorry- I forgot it was "mother-in-law", not mother.
BUT, I believe you'd need the doctors (I had one, you may not?) to write a lab slip if your husband wanted it done and the doc most likely won't add Lyme tests to the paperwork for testing for fear they will be wrong with the Parkinson's diagnosis and get sued.
PLUS, any organ, skin, blood, etc. you might collect has to be done almost immediately after the time of death (within a few hours) or the tissues will be too deteriorated to use. PLUS, you'd probably have to pay for the tests and any fees the hospital charges (in the event you are on a tight budget).
There is a lot to think about and consider, so you may just decide to allow her to rest in peace and keep good relations in your family. That's my opinion, of course, so please do as you see fit.
Below are two links that have forms, instructions, etc. for situations such as this in the future and a place to donate to that is a good resource even though they are not currently working on certain things you may want- it is a storage bank for future studies, if you are interested.
posted
Thank you for the tip about the will. I already have changing my driver's license to NOT be an organ donor anymore on my list of things to do. I will now add donate myself to lyme research on my will. My children's pediatrician is lyme friendly and is getting involved with lyme research has asked me to be a part of some igenex testing the company is giving her for free. I can't wait to see what all it is.
Posts: 58 | From GA | Registered: Dec 2014
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
There's an excellent med. article by bartonella researcher Dr. B. in NC who founded Galaxy Labs, about his own father's death from symptoms that included Parkinsonian tremors and turned out to be multiple species of bartonella. I would make sure you evaluate for bart as well, and I think if you contacted him via his lab he might be willing to assist with that end of things, though they really do specialize in bartonella but are absolutely forerunners in identifying new species and publishing on bart in the US.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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posted
My motherinlaw died Saturday night. It was an awful death but I imagine they all are. Hospice helped a lot but she didn't get into there soon enough. One thing I learned is you want to stay out of the hospital as much as possible. Especially if you are old.
It doesn't seem we are going to be able to make the testing happen.
However my brotherinlaw agreed to have any donations go to lyme research for the brain. It really hit her brain.
The Paul Duray Research Fund is the one established by A.M. - it would be my top choice.
Columbia Presbyterian would be my 2nd choice. 2 years after death I am still waiting to talk to the pathologist there regarding my husband's brain and other specimens.
Note - per personal discussion with A.M. even specimens preserved in formaldehyde can still be tested although of course frozen tissue is preferred.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Tincup
Honored Contributor (10K+ posts)
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posted
SO sorry dear one!!! My thoughts are with you.
As far as donations, I have nothing against the others, but the Lyme Disease Association has a long history of supporting GOOD research and important research, and doing what is needed with every penny that is donated.
On average, over 96% of the donations goes directly to Lyme work (programs, etc), not employees salaries, big offices and such.
They have a better ability than most to be published too, which in our world may not be too big a deal, but if we need to get the word out, that is a really good thing.
Here is the "Donate" link. Donations are tax-deductible and can be made "In Honor Of" your loved one.
They have given out about 100 research grants and many educational grants too. In fact they give a lot of grants to ILADS to help the doctors and encourage more training too.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Oh, and the LDA donated the funds for Columbia to get their first and only storage freezer for patients samples for future research for these kinds of situations. Since we started out talking about that, wanted to be sure you knew.
And no, I am not a member of the LDA. I've just watched them (closely) excel in their mission for many years.
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