My mother died of Alzheimer’s disease in February 2013. She donated her Brain to Columbia University Medical Center at New York Presbyterian Hospital. I clearly remember the call from my father. I was out walking on a Sunday. When I arrived home I had a voice mail from my father to call him, it was important. I called. He said he had returned from church to a message to come to my mother’s room in nursing care. My mother had died. Her head was packed in ice. Hershey Medical Center was on the way to transport her to the hospital where they would prepare her brain for donation. They overnighted it the next night to Columbia University. I have very strong feelings of gratitude to my mother for donating her brain for medical research. If analyzing her brain could help people suffering with Neurological disease, she was willing to do it. She made this decision while she was still capable of understanding. She was a quiet example of intention with action.
This got me thinking about organ donation for medical research and organ donation period. There is a point to all this so stay with me until the end.
It’s interesting to me that 95% of US Citizens support organ donation. Yet only 45% sign up to be organ donors. It never occurred to me NOT to be an organ donor. I can help eight people with my organs should I become brain dead. Isn’t that enough data to support the cause? Apparently not.
Why don’t people want to donate? Several reasons.
-Controversy around brain death. What is it? People question, “What if they say I am brain dead? How do they know if I can't still come back? Brain dead is brain dead people.
-Lower Quality of care. People think because Doctors know a person is a donor they will get lower quality of care thus increasing the odds that they can take the organs prematurely.
-Religion. Catholics for example believe in Body integrity. Even though the Vatican’s position is in favor of donation, Catholics are less likely to donate than other religious groups.
-The “ick factor” general disgust over the idea of organ procurement or transplantation.
-Death. People don’t like to or can’t talk about it. They ignore the issue of organ donation, because they don’t want to go there. In fact, only 25% of Americans have advanced directives. That amazes me.
Solutions to the issue of not enough organs to meet the demand include Spain’s system of; everyone is an organ donor unless you “opt out”. They have more donors than most countries. Israel’s system of incentive. Patients with a history of donation, family members who donated his or her organs, if the patient himself had made a living organ donation or has been on the donor list for at least three years—are Prioritized. They are first in line. If you are willing to give, you are first in line to receive should the need arise. (I kind of like this one)
Back to my story about my mother’s brain donated for medical research and what can come of a medical donation, be it a live organ or post mortem research. When I was writing my blog about Lyme disease I did a lot of research and came upon this article from Drexel University in Philadelphia.
One of the lead researchers is Dr. Herbert Allen. He was key in the study as you can read above. Also quoted was Dr. Allen McDonald. The study suggests that there is a link between Alzheimer’s and Lyme disease. This was the purpose of the study completed this year 2016.
Through my Medical investigation skills (I am a wanna be doctor) I found this comment in another Lyme article, not only naming Dr. Allen McDonald again but also Dr. Dietrich Klinghardt.
Alan MacDonald, MD has been studying Lyme disease for 30 years and came across an amazing discovery while analyzing brain specimens of Alzheimer’s victims: 70% of these Alzheimer’s-riddled brains contained the Lyme bacteria Borrelia. (4)
Dr. Dietrich Klinghardt, another Lyme specialist, states he’s never had a single patient with Alzheimer’s, ALS, Parkinson’s disease or multiple sclerosis who did not test positive for Borrelia. (Lyme)
I am interested in this connection. Could it be that my mother had Lyme disease and it contributed to her Alzheimer’s? If yes, had it been known and treated would she have lived without Alzheimer’s? Don’t know- but my mind was racing. I decided to act. I called the Columbia Path Lab in NYC and asked if they could post-mortem test my mother’s donated tissue for Lyme. They said "no can do." They did say they would slice off pieces of tissue and create slides to send to whomever I found willing to do the testing.
I contacted the Columbia Tick and Lyme research center one of the world’s best. I called, e-mailed and called some more. No response. I called and e-mailed a famous Lyme researcher at Johns Hopkins no response. I LinkedIn with a guy who runs the Alzheimer’s Association in Chicago, he responded but said not enough evidence to talk about and he said “Good Luck.” That annoyed me and fueled my fire. I renewed my efforts.
I sent a LinkedIn message to Dr. Allen McDonald listed in the study, but he is semi-retired, no response. I e-mailed Dr. Dietrich Klinghardt’s office and called. I corresponded with his Executive Director. BINGO! They would test my slides using a kinesiology technique called Autonomic Response Testing. A little bit woo-woo, but they say has a 95% accuracy rate. I am all about Kinesiology testing as I have personal experience with it. I believe we should have a meeting of Western and Eastern techniques for a complete holistic overview of an illness. Dr. Klinghardt is the one quoted above stating everyone he tested with ALS ,MS, Parkinson’s and Alzheimer’s tested positive for Lyme.
Nonetheless I wanted to be sure this was the way to proceed. I wanted to confirm that post mortem testing required fresh brain tissue, in other words, just died. I sent a LinkedIn message to Dr. Herbert Allen, one of the Docs at Drexel who ran the 2016 study. I told him what I wanted to do. He wrote me back immediately. This is what he said.
“Dr. Eva Sapi at the U New Haven has done brilliant work in typing the organisms with fresh tissue, Dr. Alan Macdonald, now retired, also has probes for fresh tissue (he was the first to see spirochetes in the brains of Alzheimer's patients). Dr. Judith Miklossy, the incredible Swiss researcher, has recently grown Lyme Borrelia from fresh tissue Alzheimer's brains, and those spirochetes made biofilms.”
They are getting somewhere, its being done-but with fresh tissue. My mother’s tissue is now about 3.5 years old.
I knew right then I was pursing Klinghardt’s office with the Autonomic Response Testing. It was the only technique that will work with my type of tissue samples.
It took me six weeks to coordinate with the Columbia Path Lab to have the slides sent to Klinghardt’s office. I am on a first name basis with those people. Finally, two weeks ago after I paid my $ 50.00 release fee, my mother’s newly created slides were overnighted to Klinghardt’s office in Edison, NJ. They will remain there until Dr. Klinghardt gets back from Europe and will perform the testing in early December. They are most grateful simply because according to them, their testing will help hundreds, maybe thousands of people and push research forward. I will share the results once the testing is complete.
If my efforts, and my mother’s priceless donation can help researchers determine if there is in fact a link between Alzheimer’s and Lyme—then my mission is accomplished. My hope to be frank, is that my mother’s slides test positive for Lyme. That would make me breathe easier and possibly my sister, that maybe this is what caused my mother’s long, slow decline into the black hole of Alzheimer’s at such an early age. The net of my story is this: without my mother making a conscious decision to donate her brain, and having inquisitive and curious Jan as her daughter, this would not have been possible. It was her generous donation that allowed for this process to take place.
That’s what post-death organ donation can do. Just imagine what live organ donation, or just being an organ donor can do. If you have a little red heart on your driver’s license you opted to be an organ donor.
It can save a life. No one is asking my opinion but I will give it anyway. Get over the “ick factor” or any other factor if you have one. Be an organ donor. Do it today. The life you save may be your partner, child, friend or family member. It is an easy way to pay it forward.
Until next time.