Topic: Do We Need A LYME TREATMENT CENTER OF AMERICA?
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Sorry Guys, but I am looking for something to help
the minions who are suffering. This scares me a
little because I know of the days of State Run TB
hospitals and other research facilities but If we
have a life threatening illness why can't we have
one or 4 like the CTC's of America? Who treat
cancers?
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
That would be perfect, but how would anyone ever make that happen? My life has been stolen away.
Posts: 63 | From Hell - Or at least it feels like it, Oh, I mean Tampa, FL. OOOps! :D | Registered: May 2009
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posted
Like the Field of dreams movie that takes place
in Iowa, build it and they will come. Just Joking.
Seriously if a health care investment group was
progressive enough to see the future value (which
is the only bottom line they care about) of
having such centers across the USA when the tides
of the lyme controversy changes. AND IT WILL. or
better yet some not-for-profit group did. It
could be possible.
Not in healthcare industry, but someone that
knows how the canceer center operates than it is
possible to create a plan for lyme centers. Don't
you agree? or am I just idealistic?
Posts: 105 | From Mass | Registered: Apr 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Idealistic? I call myself one who has big ideas but no money. That is the truth behind idealistic. On the other hand if you have the bucks it is called being an entrepreneur. And I see profit, satisfaction, gratification all here.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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lymeparfait
Unregistered
posted
There is a plan in place for a chronic disease research institute, in NJ. Not just lyme, but the full spectrum of associated disorders that are linked with symptoms and linked most likely by a root cause or series of root causes.
There is not other research facility in the world like this with no links to big pharma or political, or personal agendas. The idea is to be pure, unbiased research. And hopefully integrative.
It is hard as many who are in the forefront of activism for their personal campaign for any one of those mentioned disorders, may not be willing to work together for the common good, to find the link. Too much pride involved and tunnel vision.
Let's pray that we can work together, as there is power in numbers.
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posted
Pinelady: Count me in too, idealistic to the core
Lymeparfait: This sounds great. What part of the plan is this center in???
Posts: 105 | From Mass | Registered: Apr 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Amen.
I see all disorders listed as none having a
common denominator other than no discernible cause
of the illness and a small genetic occurrence
factor found in some. Why does that not make
sense that they are all looking for the same
thing???
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
quote:Originally posted by lymeparfait: There is a plan in place for a chronic disease research institute, in NJ. Not just lyme, but the full spectrum of associated disorders that are linked with symptoms and linked most likely by a root cause or series of root causes.
There is not other research facility in the world like this with no links to big pharma or political, or personal agendas. The idea is to be pure, unbiased research. And hopefully integrative.
It is hard as many who are in the forefront of activism for their personal campaign for any one of those mentioned disorders, may not be willing to work together for the common good, to find the link. Too much pride involved and tunnel vision.
Let's pray that we can work together, as there is power in numbers.
This is really interesting. Do you know how far along they are in the planning process?
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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lymeparfait
Unregistered
posted
This is announced on Lifelyme.org
Don't know about the details yet.
News Update
The Establishment of a Neuroendocrineimmune Disorder Research Center
The Lanford Foundation - LIFELYME, Inc. first conference "Similarities and Paradoxes in Chronic Illnesses" last January 2008 at the Vinoy Resort in St. Petersburg, Florida was a notable event because it brought together speakers from both the Chronic Fatigue/Fibromyalgia, Gulf War Syndrome and Multiple Chemical Sensitivity community and the Lyme community. The sharing and resulting merging of information on chronic illnesses presented at this conference was a eye opener for the medical community. It resulted in another notable merger, the partnering of LIFELYME, a Lyme disease organizatin with PANDORA, INC., a CFS/ME (non-profit 501(c)3) organization located in Miami, Florida.
The collaboration of these two organizations resulted in a grass roots initative to establish a Neuroendocrineimmune Disorder Center in New Jersey at the New Jersey University Medical College - New Jersey's university of the health sciences and the largest institution of its kind in the nation.
The Neruoendocrineimmune Disorders label or NEIDs includes under their umbrella: Chronic Fatigue Syndrome, Fibromyalgia, Gulf War Syndrome, Gulf War Illness and Multiple Chemical Sensitivities all of which share overlapping symptoms with Lyme Disease and other Vector-Borne Infectious Diseases. Current studies suggest that co-infections associated with Lyme Disease may play a major role in persistent symptoms of Lyme disease which is noted in some patients after antibiotic treatment. These symptoms may include a combination of the following: Flu-like symptoms, extreme fatigue, skin rashes, endocrine disorders, Urinary problems, sexual and reproduction dysfunction, gastrointestinal dysfunction, neurapathy, vision and /or hearing problems, disorientation, psychiatric disorders, cognitive dysfundtion, disturbed sleep, sore throat, and vision problems.
* Chronic Fatigue Syndrome/Myalgia Encephalopathy, Myaligia Encephalitis (CFS/ME) and Firomyalgia are Gulf War Syndrome illnesses ( GWS/GWI). These are medical conditions found in many veterans of previous and current Gulf Wars.
* Vector-Borne Infectious Diseases (VBID) are systemic infections transmitted by ticks and/or other vectors infected with Borrelia burgdorferi (Bb) the bacteria that causes Lyme disease. Recent studies by Epidemiologist have revealed that ticks are also infected with many other pathogens including Babesia ( a protozoa), Anaplasmosis, Bartonella, Rocky Mountain Fever and Richettsia.
* CFS, GWS, GWI, LD and MCS often cause symptoms of intense fatigue, sleep disturbances, peripheral neuropathy, headache, joint pain, debilitating cognitive impairment and respiratory infecions.
* Multiple chemical Sensitivities ( MCS) is an illness characterized by extreme and debilitation sensitivities to chemicals in the environment ( air, fabrics, food, and water). Also MCS is know as Environmental Illnesses (EL).
This past January 14, 2009, LIFELYME and PANDORA held a 'Forum on Chronic Illnesses' before 20 legislators and interested health officials at the New Jersey Department of Health in Trenton, New Jersey. The presentation (backed up with data, research and supported documents in a 3 inch binder) was presented. The presentation resulted in the unanimous support of our project to establish a NEID Research Center at the New Jersey University Medical College in Newark, NJ. The legislators requested we draft a 'Resolution' for our project to be presented before the New Jersey legislature in the near future. Dr. Kenneth Friedman, Associate Professor at the New Jersey University Medical College brought to the meeting the pre-approval to pursue this project at NJUMC.
The goals of the NEID's Research Center are to promote research, conduct research, provide patient care and treatment for NEIDs. In addition the Institute would serve as a repository of NEIDs research data/publications and exchange of such with outside institutes. The institute could also serve as a referral office and laison for social services for individuals with disabilities and chronic illnesses in the areas of medical access, prescription drugs, Medicare, Medicaid, Social Security and other diablity systems such as food stamps, physical and occupational therapy, public housing, hospice, food delivery psychological assistance and home aid services etc.
The establishment of the NEIDs Research Center in New Jersey will be the first of its kind. It will be based on the philosophy that similarities in symptoms of NEIDs are the human body's response to similarities in the underlying pathophysiologies that cause these disorders. Neurological and psychiatric problems, and auto immune diseases are implicated in patients diagnosed with NEIDs. Recent research is connecting Autism, Alzheimer's MS, Parkinsons, Lupus and other auto-immune diseases to bacteria and viral infections. Accordingly, the cornerstone of NEIDs Research Center's mission is that discoveries and advances made in anyone of NEIDs will be beneficial to other NEIDs and chronic illnesses in general.
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bettyg
Unregistered
posted
breaking this all up for severe neuro lyme folks like me who can't read long text of paragraphs.
parfait; thanks for sharing this important info!! xox
quote:Originally posted by lymeparfait:
This is announced on Lifelyme.org
Don't know about the details yet.
News Update
The Establishment of a Neuroendocrineimmune Disorder Research Center
The Lanford Foundation -
LIFELYME, Inc. first conference "Similarities and Paradoxes in Chronic Illnesses" last January 2008 at the Vinoy Resort in St. Petersburg, Florida was a notable event because it brought together speakers
from both the Chronic Fatigue/Fibromyalgia, Gulf War Syndrome and Multiple Chemical Sensitivity community and the Lyme community.
The sharing and resulting merging of information on chronic illnesses presented at this conference was a eye opener for the medical community.
It resulted in another notable merger, the partnering of LIFELYME, a Lyme disease organizatin with PANDORA, INC., a CFS/ME (non-profit 501(c)3) organization located in Miami, Florida. -------------------------------------------------
The collaboration of these two organizations resulted in a grass roots initative to establish a Neuroendocrineimmune Disorder Center in New Jersey at the New Jersey University Medical College - New Jersey's university of the health sciences and the largest institution of its kind in the nation.
The Neruoendocrineimmune Disorders label or NEIDs includes under their umbrella:
Chronic Fatigue Syndrome, Fibromyalgia, Gulf War Syndrome, Gulf War Illness and Multiple Chemical Sensitivities all of which share overlapping symptoms with Lyme Disease and other Vector-Borne Infectious Diseases.
Current studies suggest that co-infections associated with Lyme Disease may play a major role in persistent symptoms of Lyme disease which is noted in some patients after antibiotic treatment.
These symptoms may include a combination of the following:
Flu-like symptoms, extreme fatigue, skin rashes, endocrine disorders, Urinary problems, sexual and reproduction dysfunction, gastrointestinal dysfunction, neurapathy, vision and /or hearing problems, disorientation, psychiatric disorders, cognitive dysfundtion, disturbed sleep, sore throat, and vision problems.
* Chronic Fatigue Syndrome/Myalgia Encephalopathy, Myaligia Encephalitis (CFS/ME) and Firomyalgia are Gulf War Syndrome illnesses (GWS/GWI). These are medical conditions found in many veterans of previous and current Gulf Wars.
* Vector-Borne Infectious Diseases (VBID) are systemic infections transmitted by ticks and/or other vectors infected with Borrelia burgdorferi (Bb) the bacteria that causes Lyme disease.
Recent studies by Epidemiologist have revealed that ticks are also infected with many other pathogens including Babesia ( a protozoa), Anaplasmosis, Bartonella, Rocky Mountain Fever and Richettsia.
* CFS, GWS, GWI, LD and MCS often cause symptoms of
* Multiple chemical Sensitivities ( MCS) is an illness characterized by extreme and debilitation sensitivities to chemicals in the environment ( air, fabrics, food, and water). Also MCS is know as Environmental Illnesses (EL).
This past January 14, 2009, LIFELYME and PANDORA held a 'Forum on Chronic Illnesses' before 20 legislators and interested health officials at the New Jersey Department of Health in Trenton, New Jersey.
The presentation (backed up with data, research and supported documents in a 3 inch binder) was presented.
The presentation resulted in the unanimous support of our project to establish a NEID Research Center at the New Jersey University Medical College in Newark, NJ.
The legislators requested we draft a 'Resolution' for our project to be presented before the New Jersey legislature in the near future.
Dr. Kenneth Friedman, Associate Professor at the New Jersey University Medical College brought to the meeting the pre-approval to pursue this project at NJUMC.
The goals of the NEID's Research Center are to promote research, conduct research, provide patient care and treatment for NEIDs.
In addition the Institute would serve as a repository of NEIDs research data/publications and exchange of such with outside institutes.
The institute could also serve as a referral office and laison for social services for individuals with disabilities and chronic illnesses in the areas of
medical access, prescription drugs, Medicare, Medicaid, Social Security and other diablity systems such as food stamps, physical and occupational therapy, public housing, hospice, food delivery psychological assistance and home aid services etc.
The establishment of the NEIDs Research Center in New Jersey will be the first of its kind.
It will be based on the philosophy that similarities in symptoms of NEIDs are the human body's response to similarities in the underlying pathophysiologies that cause these disorders.
Neurological and psychiatric problems, and auto immune diseases are implicated in patients diagnosed with NEIDs.
Recent research is connecting Autism, Alzheimer's MS, Parkinsons, Lupus and other auto-immune diseases to bacteria and viral infections.
Accordingly, the cornerstone of NEIDs Research Center's mission is that discoveries and advances made in anyone of NEIDs will be beneficial to other NEIDs and chronic illnesses in general.
outstanding progress above!! thanks again for updating and informing us of this important event!! xox
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bettyg
Unregistered
posted
breaking this all up for severe neuro lyme folks like me who can't read long text of paragraphs.
parfait; thanks for sharing this important info!! xox
quote:Originally posted by lymeparfait:
This is announced on Lifelyme.org
Don't know about the details yet.
News Update
The Establishment of a Neuroendocrineimmune Disorder Research Center
The Lanford Foundation -
LIFELYME, Inc. first conference "Similarities and Paradoxes in Chronic Illnesses" last January 2008 at the Vinoy Resort in St. Petersburg, Florida was a notable event because it brought together speakers
from both the Chronic Fatigue/Fibromyalgia, Gulf War Syndrome and Multiple Chemical Sensitivity community and the Lyme community.
The sharing and resulting merging of information on chronic illnesses presented at this conference was a eye opener for the medical community.
It resulted in another notable merger, the partnering of LIFELYME, a Lyme disease organizatin with PANDORA, INC., a CFS/ME (non-profit 501(c)3) organization located in Miami, Florida. -------------------------------------------------
The collaboration of these two organizations resulted in a grass roots initative to establish a Neuroendocrineimmune Disorder Center in New Jersey at the New Jersey University Medical College - New Jersey's university of the health sciences and the largest institution of its kind in the nation.
The Neruoendocrineimmune Disorders label or NEIDs includes under their umbrella:
Chronic Fatigue Syndrome, Fibromyalgia, Gulf War Syndrome, Gulf War Illness and Multiple Chemical Sensitivities all of which share overlapping symptoms with Lyme Disease and other Vector-Borne Infectious Diseases.
Current studies suggest that co-infections associated with Lyme Disease may play a major role in persistent symptoms of Lyme disease which is noted in some patients after antibiotic treatment.
These symptoms may include a combination of the following:
Flu-like symptoms, extreme fatigue, skin rashes, endocrine disorders, Urinary problems, sexual and reproduction dysfunction, gastrointestinal dysfunction, neurapathy, vision and /or hearing problems, disorientation, psychiatric disorders, cognitive dysfundtion, disturbed sleep, sore throat, and vision problems.
* Chronic Fatigue Syndrome/Myalgia Encephalopathy, Myaligia Encephalitis (CFS/ME) and Firomyalgia are Gulf War Syndrome illnesses (GWS/GWI). These are medical conditions found in many veterans of previous and current Gulf Wars.
* Vector-Borne Infectious Diseases (VBID) are systemic infections transmitted by ticks and/or other vectors infected with Borrelia burgdorferi (Bb) the bacteria that causes Lyme disease.
Recent studies by Epidemiologist have revealed that ticks are also infected with many other pathogens including Babesia ( a protozoa), Anaplasmosis, Bartonella, Rocky Mountain Fever and Richettsia.
* CFS, GWS, GWI, LD and MCS often cause symptoms of
* Multiple chemical Sensitivities ( MCS) is an illness characterized by extreme and debilitation sensitivities to chemicals in the environment ( air, fabrics, food, and water). Also MCS is know as Environmental Illnesses (EL).
This past January 14, 2009, LIFELYME and PANDORA held a 'Forum on Chronic Illnesses' before 20 legislators and interested health officials at the New Jersey Department of Health in Trenton, New Jersey.
The presentation (backed up with data, research and supported documents in a 3 inch binder) was presented.
The presentation resulted in the unanimous support of our project to establish a NEID Research Center at the New Jersey University Medical College in Newark, NJ.
The legislators requested we draft a 'Resolution' for our project to be presented before the New Jersey legislature in the near future.
Dr. Kenneth Friedman, Associate Professor at the New Jersey University Medical College brought to the meeting the pre-approval to pursue this project at NJUMC.
The goals of the NEID's Research Center are to promote research, conduct research, provide patient care and treatment for NEIDs.
In addition the Institute would serve as a repository of NEIDs research data/publications and exchange of such with outside institutes.
The institute could also serve as a referral office and laison for social services for individuals with disabilities and chronic illnesses in the areas of
medical access, prescription drugs, Medicare, Medicaid, Social Security and other diablity systems such as food stamps, physical and occupational therapy, public housing, hospice, food delivery psychological assistance and home aid services etc.
The establishment of the NEIDs Research Center in New Jersey will be the first of its kind.
It will be based on the philosophy that similarities in symptoms of NEIDs are the human body's response to similarities in the underlying pathophysiologies that cause these disorders.
Neurological and psychiatric problems, and auto immune diseases are implicated in patients diagnosed with NEIDs.
Recent research is connecting Autism, Alzheimer's MS, Parkinsons, Lupus and other auto-immune diseases to bacteria and viral infections.
Accordingly, the cornerstone of NEIDs Research Center's mission is that discoveries and advances made in anyone of NEIDs will be beneficial to other NEIDs and chronic illnesses in general.
outstanding progress above!! thanks again for updating and informing us of this important event!! xox
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Great. I would love to see that binder full of
information and research. Who did this wonder work?
I wish it would be
centrally located though. This Is open to new
discoveries. Why some people seem to have sure
fire autoimmune and others show signs but test
neg. Which means they could have but as yet undiscovered?
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
The landscape has to change considerably. They could build centers, but who is going to pay for treatment.
Posts: 743 | From New York | Registered: Apr 2009
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I don't mean to be negative but there's alot of corruption associated with The New Jersey University Medical College in Newark, NJ.
I'm not exactly sure if it's the same as the University of Medicine and Dentistry of New Jersey - which is also in Newark. They may have changed the name slightly since there was such a big scandal associated with it...
"When the university's financial irregularities became a public issue last year, they were viewed as just more instances of a New Jersey government institution plundering taxpayers.
News organizations published articles about administrators and board members who padded their expense accounts, gave campaign contributions to their patrons, and awarded millions of dollars in no-bid contracts to vendors with political connections.
Federal prosecutors soon began investigating the university and found that administrators had overbilled Medicaid by tens of millions of dollars over the years.
When the United States attorney for New Jersey, Christopher J. Christie, threatened to prosecute the school for fraud -- which would have disqualified it from receiving the federal funds that make up a vast amount of its income -- administrators agreed to allow a federal monitor to investigate its operations."
------
I lived in NJ - I know how corrupt it can be there. I'm a bit skeptical how this would work.
Also- People use very different methods to get well. I can't see that they would offer alternative medicine - especially since NJ has so many big pharma companies there.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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