Dr. Lis Heininger Eulogy

Pat Smith, President, Lyme Disease Association, Inc.
I have known and worked with Dr. Lis Heininger 10 years, and she and I became friends over that period. We shared a common bond, to understand and eradicate Lyme and other tick-borne diseases…

Pat Smith, President, Lyme Disease Association, Inc.

2012-02Corning-LDALis Heininger, LDA Corning/Fingerlakes Chapter Chair and LDA President Pat Smith in New Jersey in 2012 heading into an informal dinner meeting on Lyme disease.I have known and worked with Dr. Lis Heininger 10 years, and she and I became friends over that period. We shared a common bond, to understand and eradicate Lyme and other tick-borne diseases, and to try to save our children, those at highest risk. Lis was robbed of half her life due to not only Lyme disease itself but the politics behind it. Misdiagnosed for many years, she was not able to get the care she needed early in the disease, thus progressed to chronic Lyme.

She contacted me and wanted to be involved with Lyme, not just tangentially, but be in the thick of things. She felt so strongly about what was happening in the Corning area with Lyme disease that she wanted to become a Lyme Disease Association (LDA) Chapter Chair. Normally, we do not take on a Chapter unless we know the person heading it well. In this case, it did not take me long to recommend to the LDA Board that we welcome Lis on board. In five minutes with Lis, one could feel her determination, could detect her principles, and respect her passion.

I have known and worked with many people over my 30 years in Lyme, but never have I met a more determined individual. Despite all the obstacles thrown at her, she never surrendered. Her will to live was always there along with her commitment to the cause. She never wanted others to experience what she had experienced, and she never wanted other families to suffer as hers had.

Some of my first presentations on Lyme in Corning were at Corning Inc., who recognized the value of educating their employees to the dangers of Lyme. Lis set up presentations for me in the area schools and arranged meetings with legislators and interviews with print media and TV. Although she came to those and may have said a few words, she always felt I needed to present the current information on tick-borne diseases; she did not have a need nor want to be front and center. I often argued she should be the focus, but it will come as no surprise to those of you who knew and loved Lis, I never won.

She was so determined to keep current on Lyme, she came to some of the LDA scientific conferences with someone to assist her throughout the conference. She had a very keen and orderly mind, and not only understood the science, but recognized the next step, sharing it with others who could help the cause.

A true educator, she never allowed not being able to walk, or move, or eventually not being able to talk very loudly, interfere with her drive to warn the world about Lyme. She continued to schedule and present Powerpoint presentations for herself with Boy Scouts and throughout the community, and when she could not perform all the functions necessary herself to present, she got someone else to go with her and do it. I marveled at her tenacity, her drive, her concern for others.

A year ago, I came up to Corning and spoke to the Rotary about Lyme disease, through the efforts of Lis and her dad. Lis came to hear the talk and to speak with me afterwards. She did talk to me about her own situation, but she also wanted to know about everything that was being done on the Lyme scene, since she could not really be online to hear what was happening. She was on a phone call with one of our LDA people just a few weeks ago hearing about the federal Lyme legislation the LDA just led the charge this summer to pass through the US House Of Representatives. She was happy about it.

Sometimes she was sad when she talked about her family, her parents, her husband, and her daughter especially. She knew this was very difficult on them and worried about it. Lis had strong family values, passed to her from her parents who supported her and embraced by her and Andy in their family life.

To me, she was a beacon of light, when I felt discouraged and thought I could not go on, I looked at what Lis was accomplishing, how she let nothing stand in her way. Elisabeth Kubler Ross said, “The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.” Lis was a beautiful person, inside and out. I personally will miss her, but I will never forget the selfless legacy she has left for her family, for me, the Lyme Disease Association, the Lyme community, and the public at large.




Dutchess County, NY – Congressman John Hall Press Conference

2009-04-17 Dutchess County, NY – Congressman John Hall Press Conference 2009-04-17 Dutchess County, NY – Congressman John Hall Press Conference




Poughkeepsie, NY – Update Presented to Dutchess County Lyme and Tick-Borne Disease Task Force

2009-01-?? Poughkeepsie, NY – Update Presented to Dutchess County Lyme and Tick-Borne Disease Task Force 2009-01-?? Poughkeepsie, NY – Update Presented to Dutchess County Lyme and Tick-Borne Disease Task Force




LDA meets with EPA on Lyme Disease Prevention

LDA President Pat Smith held a Lyme briefing for the Environmental Protection Agency employees in Washington, DC on June 4 and afterward, met with EPA officials Edward Brandt, Senior Economist, Pesticide Environmental Stewardship Partner Liasion; and Frank Ellis, Senior Entomologist and Team Leader, Biopesticides and Pollution Prevention Program. LDA is a PESP partner of the EPA, to try and reduce ticks and risks associated with ticks–with LDA’s program goals to apply especially to children.  about the problems facing patients nationwide and in Tennessee.

 




LDA briefs Dutchess County Lyme & TBD Task Force and NY Congressmen

The LDA was invited by the Dutchess County (NY) Lyme & Tick-Borne Disease Task Force to brief the Task Force and the invited Congressional offices on Lyme disease in New York and issues at the federal level. Pictured are NY State Assemblyman Joel Miller; Pat Smith, President, Lyme Disease Association, Inc.; Benedict B. McCaffree, PhD, Regional Representative from Congresswoman Gillibrand’s office; Rich Winters, Staff Assistant, Congressman John Hall’s office; Bill McCAbe, Dutchess County Legislator, and Dutchess County Lyme and Tick-Borne Disease Task Force; Patricia Valusek, Federal Liaison, and Gina Bisille, aide, both from Congressman Maurice Hinchey’s office.




Sleepy Hollow, NY – Senator Schumer Press Conference

Remarks of Pat Smith, President, Lyme Disease Association, Inc. (LDA)
888 366 6611


Remarks of Pat Smith, President, Lyme Disease Association, Inc. (LDA)
888 366 6611
 
 
Cases have increased due to development and sprawl which have moved animals in close proximity to people. Animals such as the white-footed mouse, chipmunk, squirrel, carry ticks near your homes, putting you, your children and your pets at risk for Lyme and other tickborne diseases. Additionally, according to the UN, global warming plays a role in the increased incidence of Lyme disease. In a 2007 report, scientists in Sweden announced that ticks now have moved as far north as the Arctic Circle.
 
 
 
 
And worse, a newly adopted position by the Council of State and Territorial Epidemiologists may allow the CDC to restrict the use of the EM rash for diagnosis in non endemic areas such as the south and Midwest, requiring in those areas a positive test along with the rash if the CDC adopts the criteria.
 
Our children 5-14, are at greatest risk of acquiring the disease, and they may spend years out of school due to its effects. Columbia University research has demonstrated a 22 pt. IQ drop 2 in a Lyme patient, reversed with treatment. LDA and its CT affiliate, Time for Lyme, partnered with Columbia University to open on April 30, 2007, an endowed research center for studying chronic Lyme disease.
 
 
 
 



Long Island, NY – Senator Schumer Press Conference

Lymeliter@aol.com

888 366 6611

www.LymeDiseaseAssociation.com


Lyme, the most prevalent vector-borne disease in the US is found in over 80 countries worldwide. About 220,000 new cases of Lyme disease develop each year, and some studies indicate 15-34% or more may develop into chronic disease.


The range of ticks is spreading nationwide and they now carry a whole host of TBDs which can complicate diagnosis and treatment.


One bite of a deer tick may infect you with Lyme and perhaps babesiosis, anaplasmosis, encephalitis, maybe even bartonellosis.

One bite of the lone star tick, spreading rapidly region-wide, may infect you with Lyme-like STARI, Ehrlichiosis, tick paralysis and perhaps RMSF.


The bacteria can survive in stored blood under blood banking conditions, and Red Cross blood donor guidelines prohibit blood donations from those with chronic Lyme disease.


Our children are at the greatest risk of acquiring the disease, and they may spend years out of school due to its effects. Columbia University research has demonstrated a 22 pt. IQ drop in a Lyme patient, reversed with treatment. LDA and its CT affiliate, Time for Lyme, are partnering with Columbia to open an endowed research center for studying chronic Lyme disease. We are ~$200,000 away from opening the center.


Lyme disease does not discriminate, nor does it confer immunity. It does not require any risky behavior beyond walking the dog, jogging, or playing in the backyard. The only thing standing between you, your family, and Lyme disease may be the power of these new monies to unlock the secrets of these insidious tick-borne diseases and to curb the spread of the tick vectors now threatening us, our families and even our pets.

Thank you.




Armonk, NY – Senator Schumer Press Conference

Lymeliter@aol.com 888 366 6611 www.LymeDiseaseAssociation.com


Lymeliter@aol.com 888 366 6611 www.LymeDiseaseAssociation.com

Lyme, the most prevalent vector-borne disease in the US is found in over 80 countries worldwide. About 220,000 new cases of Lyme disease develop each year, and some studies indicate 34% or more may develop into chronic disease.


The range of ticks is spreading nationwide and they now carry a whole host of TBDs which can complicate diagnosis and treatment.


With one bite of a deer tick, you may contract not only Lyme disease but babesiosis, anaplasmosis, encephalitis, and perhaps tularemia or maybe even bartonellosis.


With one bite of the newest arachnid to take up residence in this area, the lone star tick, you may contract Lyme-like STARI, Ehrlichiosis, tick paralysis and perhaps RMSF.


From poppy-seed to sesame-seed size, the deer tick is hard to remove once it bites you, with fish hook like barbs on the hypostome it inserts into you. It secrets a cement like substance to glue itself onto you, and it secretes blood thinners to help it feed. It may also secrete chemicals to fool your immune system.


The bacteria can survive in stored blood under blood banking conditions, and Red Cross blood donor guidelines prohibit blood donations from those with chronic Lyme disease.


Our children are at the greatest risk of acquiring the disease, and they may spend years out of school due to its effects. Columbia University research has demonstrated a 22 pt. IQ drop in a Lyme patient, reversed with treatment. LDA and its CT affiliate, Time for Lyme, are partnering with Columbia to open an endowed research center for studying chronic Lyme disease. We are ~$200,000 away from opening the center.


Remember, Lyme disease does not discriminate, nor does it confer immunity. It does not require any risky behavior beyond walking the dog, jogging, or playing in the backyard. The only thing standing between you, your family, and Lyme disease may be the power of these new monies to unlock the secrets of these insidious tick-borne diseases and to curb the spread of the tick vectors now threatening us, our families and even our pets.


Thank you.

 




Jackson, NJ – John Drulle Memorial Service

In some ways, speaking and listening today are difficult because they force us to go back and experience the hurt we felt when we lost John last year. But we all have fond memories of him and what he meant to us and our families.

You would think that side would be in contrast to his intellectual one, the professional, the doctor who had to sometimes make life and death decisions. But he was really the same with his patients. I remember taking my very sick mother there when she first came to live with me. She could barely function. Milo, all serious, did the necessary evaluations and suddenly, in he popped, and began throwing these questions at my mother who had little spark of life left.


Unfortunately, as with many, I came to meet the Drulles due to family involvement with Lyme disease. They were a godsend. I think what I appreciated the most about the visits was the medical give and take that occurred. Milo would suggest an approach and John would counter. Arguments would ensue, and we would often place mental bets on which side would win. Patients came in and brought with them many unorthodox approaches to the disease, and the tempo would increase. If truth be known, the discussions always led to the betterment of patient health, something difficult to achieve with this insidious disease. John was very outspoken, a trait that often got him into trouble I think, but a trait I valued highly, since I have often been accused of the same.


I called him for advice on LDA grants we were to review or scientific papers that were out there. It was then I realized his brilliance and his seemingly photographic memory. I called him once and cited a paper, and he informed me he had read X paper 20 years ago with some obscure citation in it that contradicted the paper I mentioned.


He paid one last medical visit to my mother at our house, 6 years after the first one I alluded to earlier. He was quite sick then and my mother even sicker. His kindness and compassion were evident as he quietly told me there was nothing more to be done for her.

Westchester, NY – Senator Schumer Press Conference

www.LymeDiseaseAssociation.com


Lyme is the most prevalent vector-borne disease in the US and the most prevalent vector-borne bacterial disease in the world. Different ticks are now carrying the disease, their range is spreading, and with one bite, you may contract not only Lyme but diseases such as babesiosis, Ehrlichiosis, bartonella, tick paralysis, and tularemia, complicating an already difficult diagnosis and treatment regimen.


The bacteria can survive in blood under blood banking conditions, and the Red Cross has changed blood donor guidelines now prohibiting those diagnosed with chronic Lyme disease from giving blood.


Our children are at the greatest risk of acquiring the disease, and they may spend years out of school due to effects of the disease. Columbia University research has demonstrated a 22 pt. IQ drop in a Lyme patient, reversed with treatment.

status. Between 220-240,000 new cases of Lyme disease develop each year, and 10-15% of Lyme patients go on to develop chronic disease.


We owe Senator Schumer a thank you for initiating the process which can obtain that commitment from the government with monies dedicated to a gold standard test, evaluating the CDC criteria, which is being used improperly for diagnosing, performing treatment studies, providing physician education and prevention.


Remember, Lyme disease does not discriminate, nor does it confer immunity. It does not require any risky behavior beyond walking the dog, jogging, or playing in the backyard sandbox. The only thing standing between you, your family, and Lyme disease may be the power of these new monies to unlock the secrets of Borrelia burgdorferi, a bacteria causing Lyme disease.


Thank you.