posted
Bettyg used to be active here on Lymenet and is still in touch with some of us. Her husband passed away and she requested that his brain be kept for research.
She reported that brain researcher Dr Alan MacDonald (featured in "Under Our Skin") just informed her he found borrelia/Lewy body dementia in the stained blood slides.
He plans to publish the study, listing her as a co-author! She is relieved to finally get a Lyme diagnosis for her husband, who was diagnosed with other health conditions (parkinson's, cancer, heart and maybe others) but not Lyme.
[ 11-22-2015, 07:11 PM: Message edited by: Robin123 ]
Posts: 13116 | From San Francisco | Registered: May 2006
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LisaK
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posted
thanks for sharing. good to hear this. I am happy she found answers.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Keebler
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posted
- Indeed, poignant discovery. So glad she has some confirmation of what she suspected to be at the root. Too bad no doctors would consider this for him long ago. It's now just one week past the year mark. Heart vibes going out to Betty.
In Jack's honor - and to show his great broad smile:
posted
Wow... I think she always suspected that he had Lyme. I actually thought he had been diagnosed with it.
Good to hear that she has answers.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lpkayak
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posted
Im getting ready to redo will and foundcout when aunt died a few months ago the best thing to do is have it in will. I tried to have my moms brain tested but i didnt do papets right so it didnt work
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
But would they access the will "in time" to do that?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
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posted
- The tissue gathering, shipping arrangements, all kinds of instructions, and possibly payments to various parties / institutions would have to be made in advance and likely updated at various points in time as staff / rules / carriers change, too.
Some places may take donations but others may need funds to support the research.
And, as with us still walking around and wondering about which labs, which doctors to order exactly what tests . . . the same sort of concerns would be part of this, too. Not all laboratories, technicians are the same.
Be careful about thinking anyone's local medical college / teaching hospital would have the adequate education / skill / desire / freedom to actually look at tissue and see what's there regarding tick-borne or chronic stealth infections.
Even the typical tissue / body donations are very complicated and not "everyone" is even accepted. Even with some donations, there can be final costs at various stages. The donation center will not cover everything, usually. Each site varies. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- While we are sort of on the subject, for anyone new to this site, new to lyme or tick-borne infections . . . it's very important to know that anyone who has had lyme, other tick borne infections
should not be a blood, an organ or tissue donor to a living person. Not even the slightest bit.
Research is one thing but donation to a living recipient is out of the question. Yet even the donation centers do not know this (other than for babesia - they do know that anyone who has ever had babesia should not donate tissue, blood, organs - ever . . . but they need to consider lyme and other TBD also pose risk). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lpkayak
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Lymetoo...well its written in medical papers too and everyonei invilved knows ahead of time..the place it is going, the current doc, nursingvhome etc
But my cousin...her son...said it had to be in will also in case as nyone objected i think
My problem was it was set up to go to the one person doingvlyme brains at the time but by the time she passed he had lost funding and i couldnt make arrangements fast enough.
Its always better for person to set it up themselves before they die. Thats what my cousin said anyway
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Good info .. be sure to tell your kids then if you want it done.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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LisaK
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posted
keebler- I dontated blood for years before dx, adn proabably many others have... so I am pretty sure most people will end up with this soon anyway.
BUT.... my thought on all this an blood/organ donation: if a dr came to you and said your child will die (or mom, dad, sister, etc) if you dont get this organ or blood, but they only one we have has lyme disease- what would YOU do????? anyone????
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
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posted
what a nice obit
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Keebler
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posted
- Lisa,
I would say "no" - absolutely not. -
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posted
good to know. i think of bettyg often.
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LisaK
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posted
keebler, but if your 10 year old son could live 5 years 90 % well at least, or could die tomorrow from the original organ failure, wouldn't that be worht it?? I guess it is for my own selfish reasons, but as a parent someone may have to make that choice.
adults can make their own choices, but I don't think there is any right or wrong answer.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Keebler
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- Diseased organs should not be transplanted. This can be avoided. Transplant patients are required to take immune suppressants. Certain infections can be torture and beyond.
Still, it's a hypothetical question as if one would accept a diseased organ or put on in a child.
There is a difference in an organ (or tissue) that is just not perfect with some "mileage" so to speak and one with infection.
The assumption is that it would be better than none but that is simply not the way these things work. Some transplants can go terribly wrong with diseased organs, especially regarding stealth infections that are so rough and so very hard to treat.
The main point is that those who know they have lyme and other tick borne / chronic stealth infections should not donate.
Beyond that, it would be great for the blood / tissue donation professionals to continue their work on ways to make this safer as, yes, it's true, many have lyme / TBD and don't know it.
But we do and we know it. I would never want to pass along any of this. -
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LisaK
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I guess I was meaning more like if every organ in the world is diseased which I think is where we are headed.
this is what I meant- if a dr came to me and said , " you are (sick). you can either 1)get the only organs available , which are lyme infected, but you may live 5 years or more with some minor to major problems, or 2) you will die tomorrow."
I'm not sure what I would do, honestly. personally I mean.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Keebler
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- Lyme does not give "minor" problems. And the "major" ones are just so big time major, beyond the scope of most doctors who are going to be treating any transplant patients.
I would pass. Definitely pass. We "gotta know when to fold 'em" so to speak.
How in the world is a transplant patient actually supposed to even obtain treatment for lyme (and all that goes with it) much less afford it - or tolerate it? Lyme can be fatal in a person so very compromised. So can some of the coinfections. A grisly time, for sure. I will just pass on that.
The hypotheticals could be puzzled around forever, though.
What may be hopeful is that the Red Cross or other blood / tissue banks may help push better testing and good treatment for ALL tick borne and chronic stealth infections so that they have a healthier population from whom to accept donations.
Rife machine or specific light "treatments" might also be among good ideas for donation tissue / organs but I'm not sure exactly how - or IF - that would work but it just seems such a likely path to explore.
Actually, it might also be an option to consider for a transplant patient but there are certainly some huge "ifs" with that and "might" is a key word.
Given the politics of all this, though, pigs will fly first before any such out of the box solutions would be considered. Even a proper test is so elusive. That is so sad.
Bringing this back to BettyG's husband and the work that Dr. MacDonald is doing, this will be of such great importance in understanding and verifying lyme in the brain . . . and the way it's not being dealt with in our medical system. -
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WPinVA
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Referring to the conversation on wills, I would think it would perhaps belong in the advance health care directive.
I am always amazed at the lengths to which Lyme patients and their families will go to help others. I am grateful to BettyG for furthering research that will help others.
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