Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
[I know that this belongs in General, but thought that I'd post it here, and it can be moved later, after people have seen it].
On Friday, January 12, 2024 at 10:56:21 AM CST, Pat Smith, President, Lyme Disease Association wrote:
Our Dear Friend Tincup It is with a sad heart that I write to tell you our beloved Tincup, Lucy Barnes, passed away yesterday. She was a principled person with high standards who did so much for Lyme patients everywhere and was never interested in credit for doing the many things she did. Her interest was in doing what was right for the Lyme patient community and the courageous doctors who have battled to help them.. I worked with her many times, and she often partnered with the LDA, trying to stop the terrible injustice plaguing Lyme patients for many decades. I was constantly amazed at her stamina despite her own issues—she never saw an issue too tough to tackle. Tincup was a gem and non-replaceable. I miss her and her strong sense of justice and her humanity. Her son said I could share this sad news with everyone. Please pray/send positive energy for her family to help them through this time. With much sadness. Pat Smith, LDA President At this time, the LDA is working on a way to facilitate space for messages about Tincup. _________________________________________________________________________
“The hottest places in hell are reserved for those who, in times of great moral crisis, maintain their neutrality.” Attributed to Dante
"Silence ensures that history repeats itself" Erin Gruwell
Organizer & Co-Planner, LDA-Columbia Lyme & TBD Conferences Member, Columbia Lyme & Tick-Borne Diseases Research Center Strategic Advisory Committee Member, HHS TBD Working Group (2017-2020) Co-Chair, HHS TBD Subcommittee: Training & Education, Access to Care & Reimbursement (2018-2020) Member HHS TBD Subcommittee: Government Inventory (2018-2020) Member, CDMRP Programmatic Panel (2016-Jan. 2020) Member, Contagion Peer Exchange Panel: Lyme Disease
Patricia Smith, President Lyme Disease Association, Inc. a national non-profit www.LymeDiseaseAssociation.org 888-366-6611 Fax: 732 938-7215
Posts: 3790 | From around | Registered: Mar 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
It's terribly sad news. She did so much for so many for decades! In spite of her own struggles with TBDs. I could never figure out how she could possibly do much on her own time and her own dime!
I knew that she must be not doing well for quite a while, as she disappeared from Lymenet, from Facebook, etc. Ever since her home was damaged by a big storm in FL a few years ago, it seems like her health probably took a big hit.
I look forward to a way for people to express their thanks and their experiences with our tireless friend and advocate.
It is going to be important for some people to try to keep her many Lyme websites going, maybe even being added to them. (Who in the world would know her passwords!!).
With sadness and appreciation . . .
Posts: 3790 | From around | Registered: Mar 2008
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kgg
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Member # 5867
posted
Sad. I loved her sense of humor.
RIP Tincup
Posts: 1729 | From Maine | Registered: Jun 2004
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
So many memories of her posts and her wonderful sense of humor.
Such dedication she had to sharing updated news about Lyme and encouraging others.
Tincup, you will be missed.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 9180 | From Illinois | Registered: Aug 2004
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Bartenderbonnie
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Member # 49177
posted
Thank you so much Rumigirl for posting this message from Pat Smith, President, Lyme Disease Association on the status of our beloved Tincup.
I am heartbroken 💔
Posts: 3028 | From Florida | Registered: Nov 2016
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posted
She used to be one of my very best friends here on Lymenet. Somewhere is a very "famous" verbal battle about ice cream that we had.
It turned into a very long thread of fun.
Oh, Tincup, I hope you are enjoying your heavenly home!! We will never forget you and all you did for the Lyme community.
Love,
Lymetutu
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96237 | From Texas | Registered: Feb 2001
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Such very sad news! My sincere condolences to her family.
Tincup was one of a kind. There's no one else like her.
When I first started posting on Lymenet in 2004 she was there helping me to figure out what was happening.
For years she offered desperately needed advise and support.
She saved my life when I was at my lowest.
Meeting her in Raleigh NC to support an LLMD was like meeting a rock star. She had her own entourage (you guys know who you are) and she was only to happy to add folks to it.
Her personality was unique and magnetic and drew people to her. It was like basking in the sun. At the same time she was so down to earth and transparent, not putting on any airs and just wanting to be your friend and help in anyway she could.
I've never met anyone more determined to fight with everything you've got for everything you want than Tincup.
I hope to see you again my friend.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6352 | From Columbus, GA | Registered: Jul 2004
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Very nice write up about our BELOVED Tincup on Lyme Disease Association by Pat Smith, January 15, 2024
Over the decades. I have been fortunate to work with some of the finest people I have ever known. These are the people who have been fighting against influential individuals preventing the diagnosis and treatment of thousands of Lyme patients-instead should be working for those who have helped provide or enable treatment.
One of the humblest, bravest, brightest persons I have known-and a dear friend is Tincup, aka, Lucy Barnes. I have had the greatest respect for TC, (how I knew her best). She was very grass roots and did not seek to have a large group, but worked mostly on her own, sometimes partnering with other Lyme groups or advocates across the country.
She was no nonsense and worked day and night, when sick or less sick, to investigate all avenues to stop the perpetrators who deny chronic Lyme disease.
We often talked well into the night to hash out what priorities needed to be addressed and how. She had a way of talking you into doing something you really may not have wanted to do. As Teddy Roosevelt said, "speak softly but carry a big stick; you will go far." She spoke softly but you knew the stick was back there somewhere...
She was always optimistic, brilliant, and a real problem solver. Patients contacted her to help find doctors who would treat them, to figure out how to get payment from insurers for their treatment, and to find out where to go for help if they had no insurance. She worked hard with other Lyme groups to shape public policy, which has not been favorable to treatment for Lyme patients.
Despite that, she still worked in good faith with the government to try to change minds. Through that, she was always pleasant and had a sense of humor.
I remember when I sat on the HHS Tick-Borne Disease Working Group in DC. She signed up as a member of the public to speak virtually at one of the meetings. She presented to us in her sincere, down-to- earth, manner the problems patients were facing, and suddenly, there was a noisy interruption and roosters were loudly crowing.
No one knew quite what was happening, and TC made a joke about the roosters outside her home joining in the meeting to have their voices heard about the injustices of Lyme. She was not flustered at all, and later she sent an apology e-mail to government members because that was her nature.
But she heard back from the officials present at the meeting. They said that it made their day. When I hear about roosters or hear them crowing, I always think about TC and the Lyme rooster-advocates.
Despite sometimes daunting opposition, TC never backed down. In our many conversations over the years, most of the time, we were in agreement as to how to proceed with a Lyme issue. If we didn't agree, we worked it out and either chose separate paths for that issue or worked together in the long run.
On Lyme issues in Maryland, where she lived then, she was very knowledgeable. For various reasons she herself did not feel comfortable educating the Maryland legislature on a particular Lyme issue. She felt I would best represent the Lyme patients in that State. She educated me to the government positions in Maryland and persuaded me to travel to Maryland to go before the legislature instead.
She will be sorely missed by her family, friends, Lyme groups, Lyme patients and physicians. A humanitarian extraordinaire who fearlessly confronted the evil faced daily by those with Lyme, she never backed down and always followed through.
TC always exhibited compassion and humor to those in need.
Moving forward, I will always try to maintain those attributes in my Lyme work knowing that somewhere, TC is there. I can hear her little laugh now at 2am, then telling me, "get busy, there's more work to be done and you need to do it!"
Will never forgot you Tincup. 💔
PS. I had to edit out a picture because it was a picture of Pat Smith and not Lucy. Still to this day, I do not know what Lucy looks like.
aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Thank you BB for posting this!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6352 | From Columbus, GA | Registered: Jul 2004
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Thank you, bartender bonnie, for posting Pat Smith's wonderful remembrance. I have yet to write mine.
BB, someone has to post a photo, but I don't have one. Surely, Pat Smith has one. Surely, that will be forthcoming, as people rally around remembrances of her.
How could our dear, TinCup be gone? Well, she is inside our hearts, having inhabited them over long years of cheering us on and giving us needed information. Those are mighty big shoes to fill.
More to come . . .
Posts: 3790 | From around | Registered: Mar 2008
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Oh my. The loss of another great contributor to this site for years. Gigi '21, Keebler '22 and now TC '24
For years I referred to the Tincup Maryland site for answers. RIP, Lyme warrior you did good.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6485 | From Louisville, Ky | Registered: Jan 2002
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
If you would like to send Tincup aka Lucy Barnes’s family a note, here is a link to do so;
Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
Thanks to Pat Smith for posting about our dear TC's passing. I love reading all your comments here.
We were in touch for years and then she sort of disappeared. I tried lots of ways to contact her, but no luck.
I posted a note at the site LDA gave above and hope you will too.
-------------------- Ann-OH Posts: 1664 | From Ohio | Registered: Aug 2014
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
Sorry to hear of Lucy's passing. She was simply an amazing advocate in Maryland and for all of us. May she rest in peace with our fondest of memories.
Bob
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
I am so sad to hear this. She was a dear friend to me for so many years.
She went on some of my Lyme floats.
I could always get her going over my fried catfish pictures.
MADDOG
Posts: 4026 | From Ohio | Registered: Oct 2000
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posted
I am so very heartbroken to learn of Lucy/TinCup's passing. She helped me, as many others, navigate through this life we have.
Rest well Good Woman..you are loved! TnFlowerChild
Posts: 238 | From Jackson, TN | Registered: Mar 2010
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Looks like I wrote about TinCup in the wrong place- in General, before I saw the news with replies here. Don't know to move it, so will join in here with those who are grieving her loss. Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Wow,
So sorry to hear of Tincup passing. She helped me so much. I would not be here today without her telling me to get treated for Babesia. Sad day indeed.
-------------------- God Bless You! Everything..is just my opinion. Posts: 6639 | From Michigan | Registered: Jun 2001
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posted
I am sorry to hear this. May she rest in peace.
Posts: 706 | From CA | Registered: Dec 2011
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi there all,
Sad news for us, miss you Tincup, rest well in your heavenly home!
I will always miss her, as will TxCoord/Trek Tinny was a blessing to all of us.
Jus' Silverwolfi here,sad tonight.
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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posted
I logged in here and was saddened to see this about Lucy.
She was one of the first to reach out 10+ years ago when I started my journey on this hell.
I miss the old Lymenet before everybody went to facebook (I don't partake in FB)
Posts: 108 | From Rural Michigan | Registered: Jul 2011
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posted
Oh my! She was so central here and everywhere, and so welcoming. And so funny.
I knew she wasn't doing well. She was quite the medical warrior, trying to survive all her infections, something like a dozen of them.
She was originally a park ranger and loved the outdoors and thus quite vulnerable to ticks.
Bartender Bonnie - I saw a picture of her once - she was short with dark curly hair. Btw, she was super proud of her granddaughter who was born in 2009. She's 15 now!
We will miss TC forever.
[ 02-22-2024, 08:08 AM: Message edited by: Robin123 ]
Posts: 13127 | From San Francisco | Registered: May 2006
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posted
Re Bartender Bonnie's post above about sending any messages to TC's family, it says there we can send messages until March 13.
Posts: 13127 | From San Francisco | Registered: May 2006
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posted
Hello, I come back to this site every once in awhile and saw this posting. Very sad. If it wasn’t for Tin Cup I would not have gotten my son into Dr H practice. She knew of a cancellation and DM me. We got in and went to NY all the way from TX. A little background my husband and I had Lyme and babesia and were treated successfully in Hou but that dr was very old and passed away. Years later my son got it while traveling in Norway. The coincidence is that right after we saw Dr H that Aug in 2008 he was going to Norway for a conference regarding Lyme in Nordic countries.
We are all good now. No issues.
Posts: 164 | From somewhere | Registered: May 2010
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
She was an angel on earth and I believe she still looks over all the thousands of people she positively impacted.
Posts: 9431 | From Sunshine State | Registered: Mar 2001
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